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Definition of Asperger Syndrome from the National
Autistic Society in the UK
Social Communication
People with AS may be very good at basic communication and
letting people know what they think and feel. Their difficulties lie in the social aspects of communication. For example:
They may have difficulty understanding gestures, body language, and facial expressions.
They may not be aware
of what is socially appropriate and may have difficulty choosing topics to talk about.
They may not be socially motivated
because they find communication difficult, so they may not have many friends and they may choose not to socialise very much.
Some of these problems can be seen in the way people with AS present themselves.
For example, classic traits include:
Difficulty
making eye contact.
Repetitive speech.
Difficulties expressing themselves, especially when talking about emotions.
Anxiety in social situations, and resultant nervous tics.
Social Understanding
Typical examples of difficulties
with social understanding include:
Difficulties in group situations, such as going to the pub with a group of friends.
Finding small talk and chatting very difficult.
Problems understanding double meanings, for example, not knowing when
people are teasing you.
Not choosing appropriate topics to talk about.
Taking what people say very literally.
You
might want to back this up with specific examples of the kind of social situations you find difficult.
Imagination
This can be a slightly confusing term. People often assume it means that people with AS are not imaginative in the conventional
use if the word, for example, they lack creative abilities. This is not the case, and many people with AS are extremely able
writers, artists and musicians. Instead, lack of imagination in AS can include difficulty imagining alternative outcomes and
finding it hard to predict what will happen next. This frequently lead to anxiety. This can present as:
An obsession
with rigid routines and distress if routines are disrupted.
Problems with making plans for the future and having difficulties
organising your life.
Problems with sequencing tasks, so that preparing to go out can be difficult because you can't always
remember what to take with you.
Some people with AS over compensate for this by being extremely meticulous in their planning,
and having extensive written or mental checklists.
Secondary Traits of Asperger Syndrome
Besides the triad of
impairments, people with AS tend to have difficulties which relate to the triad but are not included within it. These can
include:
Obsessive compulsive behaviours. Often these are severe enough to be diagnosed as Obsessive Compulsive Disorder
or OCD.
These can also be linked to obsessive interest in just one topic, for example they might have one subject about
which they are extremely knowledgeable which they want to talk about with everyone they meet.
Phobias. Sometimes people
with AS are described as having a social phobia, but they may also be affected by other common fears such as claustrophobia
and agoraphobia.
Acute anxiety, which can lead to panic attacks and a rigid following of routines.
Depression and
social isolation. This is especially common among adults.
Clumsiness, often linked dot a condition known as dyspraxia.
This includes difficulties with fine motor coordination, such as difficulties writing neatly, as well as problems with gross
motor coordination, such as ungainly movements, tripping and falling a lot, and sometimes appearing drunk as a result.
Not
having these associated problems does not mean you do not have AS, but if you have any of them you might want to describe
it in order to back up your case.
ICD 10 (World Health Organisation 1992) Diagnostic Criteria
A. A lack of
any clinically significant delay in language or cognitive development.
Diagnosis requires that single words should
have developed by two years of age or earlier and that communicative phrases be used by three years of age or earlier. Self-help
skills, adaptive behaviour and curiosity about the environment during the first three years should be at a level consistent
with normal intellectual development. However, motor milestones may be somewhat delayed and motor clumsiness is usual (although
not a necessary diagnostic feature). Isolated special skills, often related to abnormal preoccupations, are common, but are
not required for diagnosis.
B. Qualitative impairments in reciprocal social interaction (criteria as for autism).
Diagnosis requires demonstrable abnormalities in at least 3 out of the following 5 areas:
Failure adequately
to use eye-to-eye gaze, facial expression, body posture and gesture to regulate social interaction;
Failure to develop
(in a manner appropriate to mental age, and despite ample opportunities) peer relationships that involve a mutual sharing
of interests, activities and emotions;
Rarely seeking and using other people for comfort and affection at times of stress
or distress and/or offering comfort and affection to others when they are showing distress or unhappiness;
Lack of shared
enjoyment in terms of vicarious pleasure in other people's happiness and/or a spontaneous seeking to share their own enjoyment
through joint involvement with others;
A lack of socio-emotional reciprocity as shown by an impaired or deviant response
to other people's emotions; and/or lack of modulation of behaviour according to social context, and/or a weak integration
of social, emotional and communicative behaviours.
C. Restricted, repetitive and stereotyped patterns of behaviour,
interests and activities. (Criteria as for autism; however it would be less usual for these to include either motor mannerisms
or preoccupations with part-objects or non-functional elements of play materials).
Diagnosis requires demonstrable
abnormalities in at least 2 out of the following 6 areas:
An encompassing preoccupation with stereotyped and restricted
patterns of interest;
Specific attachments to unusual objects;
Apparently compulsive adherence to specific, non-functional,
routines or rituals;
Stereotyped and repetitive motor mannerisms that involve either hand/finger flapping or twisting,
or complex whole body movement;
Preoccupations with part-objects or non-functional elements of play materials (such as
their odour, the feel of their surface/ or the noise/vibration that they generate);
Distress over changes in small, non-functional,
details of the environment.
D. The disorder is not attributable to the other varieties of pervasive developmental
disorder; schizotypal disorder; simple schizophrenia; reactive and disinhibited attachment disorder of childhood; obsessional
personality disorder; obsessive compulsive disorder.
Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)
Diagnostic Criteria
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
Marked impairment in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body postures,
and gestures to regulate social interaction;
Failure to develop peer relationships appropriate to developmental level;
A lack of spontaneous seeking to share enjoyment, interests or achievements with other people (eg: by a lack of showing,
bringing, or pointing out objects of interest to other people);
Lack of social or emotional reciprocity.
B. Restricted
repetitive and stereotyped patterns of behaviour, interests, and activities, as manifested by at least one of the following:
Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either
in intensity or focus;
Apparently inflexible adherence to specific, non-functional routines or rituals;
Stereotyped
and repetitive motor mannerisms (eg: hand or finger flapping or twisting, or complex whole-body movements);
Persistent
preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational,
or other important areas of functioning.
D. There is no clinically significant general delay in language (eg: single
words used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay
in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than social
interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive
Developmental Disorder, or Schizophrenia.
Gillberg (1991) Diagnostic Criteria
A. Severe impairment in reciprocal
social interaction as manifested by at least two of the following four:
Inability to interact with peers.
Lack
of desire to interact with peers.
Lack of appreciation of social cues.
Socially and emotionally inappropriate behaviour.
B. All-absorbing narrow interest, as manifested by at least one of the following three:
Exclusion of other
activities.
Repetitive adherence.
More rote than meaning.
C. Speech and language problems, as manifested by
at least three of the following five:
Delayed development of language.
Superficially perfect expressive language.
Formal, pedantic language.
Odd prosody, peculiar voice characteristics.
Impairment of comprehension, including
misinterpretations of literal/implied meanings.
D. Non-verbal communication problems, as manifested by at least one
of the following five:
Limited use of gestures.
Clumsy/gauche body language.
Limited facial expression.
Inappropriate
expression.
Peculiar, stiff gaze.
E. Motor clumsiness, as documented by poor performance on neurodevelopmental
examination.
Discovery Criteria by T. Attwood and C. Gray
A qualitative advantage in social interaction, as manifested
by a majority of the following:
Peer relationships characterized by absolute loyalty and impeccable dependability
Free of sexist, "age-ist", or culturalist biases; ability to regard others at "face value"
Speaking ones mind irrespective
of social context or adherence to personal beliefs
Ability to pursue personal theory or perspective despite conflicting
evidence
Seeking an audience or friends capable of: enthusiasm for unique interests and topics; consideration of details;
spending time discussing a topic that may not be of primary interest
Listening without continual judgment or assumption
Interested primarily in significant contributions to conversation; preferring to avoid "ritualistic small talk" or socially
trivial statements and superficial conversation.
Seeking sincere, positive, genuine friends with an unassuming sense of
humour.
Fluent in "Aspergerese", a social language characterized by at least three of the following:
A determination
to seek the truth
Conversation free of hidden meaning or agenda
Advanced vocabulary and interest in words
Fascination
with word-based humour, such as puns
Advanced use of pictorial metaphor
Cognitive skills characterized by at least
four of the following:
Strong preference for detail over gestalt
Original, often unique perspective in problem
solving
Exceptional memory and/or recall of details often forgotten or disregarded by others, for example: names, dates,
schedules, routines
Avid perseverance in gathering and cataloguing information on a topic of interest
Persistence
of thought
Encyclopaedic or "CD ROM" knowledge of one or more topics
Knowledge of routines and a focused desire to
maintain order and accuracy
Clarity of values/decision making unaltered by political or financial factors
Additional
possible features:
Acute sensitivity to specific sensory experiences and stimuli, for example: hearing, touch, vision,
and/or smell
Strength in individual sports and games, particularly those involving endurance or visual accuracy, including
rowing, swimming, bowling, chess
"Social unsung hero" with trusting optimism: frequent victim of social weaknesses of
others, while steadfast in the belief of the possibility of genuine friendship
Increased probability over general population
of attending university after high school
Often take care of others outside the range of typical development
Summary
of the Diagnostic Criteria
In very brief summary I would describe Asperger syndrome as:
At least average intelligence.
Normal language development.
Different style of communication and interaction, with social problems likely as a result.
Different style of thinking, with learning difficulties and/or unusual gifts likely as a result.
Different style of
perceptions, with non-typical behaviours and reactions likely as a result.
I think the big dilemma with diagnostic criteria
is that they only exist in the first place because they are designed to identify the existence of a problem, so they are bound
to be quite negative and focusing on the bad rather than the good. After all, doctors don't have time to diagnosis people
with being OK... they are there to help people who need it. People with Asperger syndrome usually need help, because it can
be very disabling and traumatic being different, but the experience is different for everybody...
Some people need
help just to cope with life at all.
Some people struggle because they lack the support and understanding that others take
for granted.
Some people are lucky enough to have the support and understanding they need and cope about as well as anybody.
There are three ways of looking at that... either some people are more mildly 'Asperger' than others OR having Asperger
syndrome itself is not a problem, but the consequences of it sometimes can be and often are, (possibly depending on your personality
and circumstances), OR it could be a combination of both. I'll leave you with that to think about anyway because I don't know
what I think yet.
Source: http://www.as-if.org.uk/criteria.htm
What is autism?
Autism is a complex biological disorder
that generally lasts throughout a persons life. It is called a developmental disability because it starts before age three,
in the developmental period, and causes delays or problems with many different ways in which a person develops or grows.
In most cases, autism causes problems with:
- Communication, both verbal (spoken) and nonverbal (unspoken)
- Social interactions with other people, both physical (such as hugging
or holding) and verbal (such as having a conversation)
- Routines or repetitive behaviors, like repeating words or actions
over and over, obsessively following routines or schedules for their actions, or having very specific ways of arranging their
belongings
The symptoms of the disorder cut off people with autism from the
world around them. Children with autism may not want their mothers to hold them. Adults with autism may not look others in
the eye. Some people with autism never learn how to talk. These behaviors not only make life difficult for people who have
autism, but also make life hard for their families, their health care providers, their teachers, and anyone who comes in contact
with them.
When should a doctor evaluate a child for autism?
Doctors should do a developmental screening
at every well-baby and well-child visit, through the preschool years. In this screening, the doctor asks questions related
to normal development that allow him or her to measure a specific childs development. These questions are often more specific
versions of the red flags listed on the previous page, such as Does the child cuddle like other children? Or, Does the child
direct your attention by holding up objects for you to see? The doctor will also ask if the child has any features that were
listed earlier as definite signs for evaluation for autism.
If the doctor finds that a child either has definite signs of autism,
or has a high number of red flags, he or she will send the child to a specialist in child development or another type of health
care professional, so the child can be tested for autism. The specialist will rule out other disorders and use tests specific
to autism. Then he or she will decide whether a formal diagnosis of autism, ASD, or another disorder is appropriate.
Are there any behaviors that signal a need for a doctor
to evaluate a child for autism?
A doctor should definitely and immediately
evaluate a child for autism if he or she:
- Does not babble or coo by 12 months of age
- Does not gesture (point, wave, grasp, etc.) by 12 months of age
- Does not say single words by 16 months of age
- Does not say two-word phrases on his or her own (rather than just
repeating what someone says to him or her) by 24 months of age
- Has any loss of any language or social skill at any age
Are there other things that might be signs of autism?
There are a number of things that parents, teachers,
and others who care for children can look for to determine if a child needs to be evaluated for autism. The following
red flags could be signs that a doctor should evaluate a child for autism or a related communication disorder. Important
to note, your child may not show some/all of these "red flags".
- Language skills or speech are delayed.
- The child doesnt follow directions.
- At times, the child seems to be deaf.
The child:
- does not respond to his/her name
- cannot explain what he/she wants
- seems to hear sometimes, but not others
- doesn't point or wave bye-bye
- used to say a few words or babble, but now he/she doesnt
- throws intense or violent tantrums
- has odd movement patterns
- is hyperactive, uncooperative, or oppositional
- doesn't know how to play with toys
- doesn't smile when smiled at
- has poor eye contact
- gets stuck on things over and over and cant move on to other things
- seems to prefer to play alone
- gets things for him/herself only
- is very independent for his/her age
- does things early compared to other children
- seems to be in his/her own world
- seems to tune people out
- is not interested in other children
- walks on his/her toes
- shows unusual attachments to toys, objects, or schedules (i.e., always
holding a string or having to put socks on before pants).
spends a lot of time lining things up or putting things
in a certain order.
What are the treatments for autism?
Many families of children and adults with autism are finding new
hope from a variety of treatments for autism. The list below does not include all of the possible treatments for autism. If
you have a question about treatment, you should talk to a health care professional who specializes in caring for people with
autism. Some treatments include:
- Individualized Education Programs (IEPs) are one effective way to
prevent problem behaviors typically related to autism. IEPs involve a variety of interventions, including some of those mentioned
below, and are designed to help a child or adult with autism to overcome his or her specific problems. Children with autism
seem to respond very well to IEPs that are properly designed and systematically put into practice.
- Comprehensive Treatment Programs encompass a number of different
theories about treating autism. These programs range from specific methods of learning, to applied behavior analysis, to reaching
certain developmental goals. In general, children need to be in this type of program for 15-40 hours a week, for two years
or more, to change their behaviors and prevent problems.
- Applied Behavior Analysis (ABA) generally focuses on reducing specific
problem behaviors and teaching new skills. Recently, ABA programs have broadened their scope to include what to do before
or between episodes of problem behaviors, in addition to what to do during or after these episodes. By showing children or
adults with autism how to handle things like a change in schedule, furniture that has been moved, and meeting new people,
ABA removes these situations as triggers for problem behaviors.
- Positive Behavioral Interventions and Support (PBS) is an approach
that tries to increase positive behaviors, decrease problem behavior, and improve the childs or adults lifestyle. The PBS
method looks at the interactions between people with autism, their environment, their behavior, and their learning processes
to develop the best lifestyle for them.
- Medications can also be effective in improving the behavior or abilities
of a person with autism. In general, these medications are called psychoactive because the drugs affect the brain of a person
with autism. Medication is often used to deal with a specific behavior, such as reducing self-injurious behavior, which may
allow the person with autism to focus on other things, like learning.
Many people with autism have other, treatable conditions in addition
to their autism. Sleep disorders, seizures, allergies, and digestive problems are common among those with autism, but these
problems can often be treated with medication. Treatment for these conditions cannot cure autism, but it can improve the quality-of-life
for people who have autism and their families.
What conditions are included in the autism spectrum disorder
(ASD) category?
Currently, ASD includes:
- Autistic disorder (sometimes called classic autism)
- Asperger syndrome
- Childhood disintegrative disorder (CDD)
- Rett syndrome
- Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS)
or atypical autism
Depending on his or her specific symptoms, a person with autism
can be in any one of these categories.
In 1999, NICHD-supported researchers identified the gene responsible
for Rett syndrome, one of the conditions included in the ASD category. Rett syndrome occurs only in girls and causes them
to develop autism-like symptoms after seemingly normal development. This discovery could lead to improved detection, prevention,
and treatment of Rett syndrome.
Advances in detecting, preventing, and treating Rett syndrome may
shed light on ways to understand and treat ASDs, including those aspects of ASD that may involve regression.
When do people usually show signs of autism?
In most cases, the symptoms of autism are measurable by certain
screening tools at 18 months of age. However, parents and experts in autism treatment can usually detect symptoms before this
time. In general, a formal diagnosis of autism can be made when a child is two, but is usually made when a child is between
two and three, when he or she has a noticeable delay in developing language skills.
Recent studies show that at least 20 percent of children with autism
experienced a regression, as reported by their parents. This means that the children had a mostly normal development,
but then had a loss of social or communication skills.
Who usually gets autism?
Current figures show that autism occurs in all racial, ethnic, and
social groups. These statistics also show that boys are three-to-four times more likely to be affected by autism than girls
are. In addition, if a family has one child with autism, there is a 5-to-10 percent chance that the family will have
another child with autism. This rate may be an underestimate, given that many families with one autistic child will stop having
children due to stress or the fear of having another child with the disorder. In contrast, if a family does not
have a child with autism, there is only a 0.1-to-0.2 percent chance that the family will have a child with autism.
Who is allowed to diagnose a person with Asperger's or PDD?
Medical doctors (GP's, psychiatrists, pediatricians) and psychologists
are permitted to give a formal diagnosis of any type of PDD. Social workers, therapists, nurses, occupational therapists,
and speech-language pathologists may provide a professional opinion as to the likelihood that a child or an individual has
the disorder.
Is it possible that more than one person in my family has
PDD?
Yes it is. Studies are increasingly pointing to a genetic basis for autism and other Pervasive
Developmental Disorders. Multiple occurrences of the disorder may occur in the same generation or across generations.
Should I do anything to prepare for my child being assessed?
The doctor may want to see any previous assessments that your child has had; if you have them, bring
them along to the appointment. As well, as a part of the assessment, developmental milestones will be discussed. It is helpful
to think of these beforehand and gather any records you may have (for instance, a baby book that you have recorded milestones).
Make a list of the characteristics, problems, or behaviors that are concerning you before the appointment. As well, write
out any questions that you may have for the doctor.
What is the process involved in getting a diagnosis
from a professional?
It depends on the individual completing the assessment and the individual
being assessed. Some doctors may not make a diagnosis immediately and will prefer instead to wait and see how a young child
progresses over time. Those who are very familiar with PDD conditions, may feel confident about making a diagnosis immediately.
During the interview(s) the assessor will want to know the characteristics that are concerning and the child's or adult's
developmental milestones. Standardized tests (such as tests of intelligence and language abilities) may be a part of an assessment,
especially if the diagnostician is a psychologist.
My child already has another diagnosis. Will that diagnosis
remain if they are diagnosed with PDD?
This is a complex question and there may be considerable
variation as to how professionals respond to this issue. Sometimes, a diagnosis that is given before a diagnosis of PDD or
Asperger's is given, addresses some of the problems that may be evident (for example, a learning disability or attention deficit
problem). But, this label may not account for the whole range of characteristics that a diagnosis of PDD addresses. It is
therefore most helpful to think of your child as having the diagnosis which is most inclusive of all the symptoms which s/he
exhibits. If an individual has symptoms which are not explained by a diagnosis of PDD (such as depression or severe anxiety),
these labels may be given in addition to a diagnosis of PDD. In this case, they may need special attention in the individual's
treatment plan.
Will a diagnosis of PDD or Asperger's work against my
child in the future?
Probably not. Unfortunately, inappropriate use of diagnoses has happened
in the past with other childhood disorders and many parents are understandably leary of having their child "labeled". A diagnosis
of PDD will hopefully help you to get the most appropriate services and treatment for your child. As well, it is critical
that your child's treatment and educational plans are made with this diagnosis in mind.
Who should I tell my child's diagnosis to?
Any professional involved with your child (teachers, doctors, social workers, therapists) should know
that your child has been diagnosed with PDD. In some cases, if your child is very mildly affected by PDD or Asperger's it
may not be necessary to tell others involved with your child (such as camp counselors, swimming coaches, etc.). However, in
most cases, telling these people helps them understand your child better and interact more effectively with them.
Now that my child has been diagnosed, what's next?
When your child is diagnosed, the most important next step is for you and professionals involved with
your child to learn about the many methods of intervention used with individuals with PDD.
Is it Autism?
When trying to address specific behaviors, a good place to start is to take into consideration how these behaviors
may be the result of the neurological impairments that are associated with autism. From this perspective, parents and teachers
can then begin to examine their students sensory environment for things that may be causing problematic behaviors. Things
such as fire alarms and school bells may be causing physical pain for someone with autism who has a high degree of sensitivity
to high pitched sounds. Other possible causes of problematic behaviors could be uncomfortable or ill fitting clothes that
a student may be asked to wear.
How do I handle my child with Autism?
Because of problems with processing and integrating information, many children with autism often exhibit difficult
behaviors.To be sure, this can be very challenging for parents and educators.
Various methods and techniques have proven successful towards the
reduction of these problematic behaviors. Some of the most effective methods have relied upon the reduction of confusion in
the life of the child with autism. This can be achieved through the implementation of consistent structures, that children
may rely upon to get them through each day. Techniques using schedule boards that are reviewed and updated each morning have
been very beneficial. Confusion also decreases with simple and consistent instructions for the completion of various tasks.
These proactive measures may help reduce the incidence of problematic
behaviors. Very often children with autism will respond favorably to environments and tasks that have been designed to match
their learning strengths.
Why do children with autism often display these behaviors;
compulsiveness, perfectionism, odd movements and a need for organization?
Perfectionism, odd
movements and a need for organization may be viewed as compensating behaviors that help individuals with autism cope with
their various neurological impairments. These compensating behaviors often provide individuals with some much needed stability
in a world that may seem very confusing.
What is different about my child's sensory systems?
Children with autism may be hyposensitive or hypersensitive in their responses to various sensory input.
Being hyposensitive may include a high degree of tolerance to pain. This circumstance can be dangerous and should always be
considered when children with autism are working around hot surfaces or objects.
Other children with autism may be hypersensitive to pain or refuse
to wear anything but loose fitting, soft clothing. This circumstance is often referred to as tactile defensiveness and should
be considered whenever touching a child with autism.
Is my child with Autism being stubborn?
Many children with autism seem to be very stubborn. While that may
be true it is also true that this is a far too simplistic rationale for the behaviors.
Keep in mind the role that neurological impairments play in the
behaviors of children with autism. What may seem like an example of stubbornness may result from not having understanding
or empathy for others. This often results in self-centeredness.
Confusion is common in the lives of children with autism. When steps
are taken to help them understand their environment and what is expected of them, it is possible to reduce or replace behaviors
that previously seemed to be examples of stubbornness.
Why is early intervention important?
Both scientific studies and practical experience have shown that the prognosis is greatly improved if a child
is placed into an intense, highly structured educational program by age two or three. Autistic children perform stereotypic
behaviors such as rocking or twiddling a penny because engaging in repetitive behaviors shuts off sounds and sights which
cause confusion and/or pain. The problems is that if the child is allowed to shut out the world, his brain will not develop.
PREDICTING
AUTISM
An important new
study offers clues into how this disabling disease progresses.
By Geoffrey Cowley
NEWSWEEK
July 28
issue Of all the misfortunes a child can suffer, few provoke as much dread as
autism. The conditiona neurological disorder that impedes language and derails social and emotional developmenthas become
ever more common in recent decades, thanks partly to better diagnosis.
EXPERTS NOW SUSPECT
that one person in 160 lives with some degree of autism. Thats three to four times the rate in the 1970s.
But while
the outward manifestations are well known, science is just beginning to illuminate the underlying biology. What goes wrong
in the autistic brain? What defect or injury leaves it largely incapable of empathy? A growing body of evidence, capped last
week by new findings from the University of California, San Diego, raises a tantalizing possibility. The new study, published
in The Journal of the American Medical Association, links the condition to abnormally rapid brain growth during infancyand
it raises new hopes for diagnosis and treatment.
The key
to last weeks finding was not a million-dollar imaging device but a tape measure. Past studies have shown that autistic toddlers
have abnormally large brains for their age. But because autism is rarely detected in kids younger than 2 or 3 years old, researchers
have never known quite how that situation arises. Two years ago the San Diego team realized that childrens old medical records
might hold important clues. Led by neuroscientist Eric Courchesne, the researchers tracked down early-childhood head measurements
for 48 autistic preschoolers, and compared them with national norms. As it turned out, the kids heads had been smaller than
average at birth but had grown explosively during infancy, shooting from the 25th percentile to the 84th in roughly a years
time. And faster growth predicted greater impairment. Mildly autistic subjects reached only the 59th percentile, but the severely
afflicted kids reached the 95th percentile.
The implications
are hard to miss. Autism, the new findings suggest, is not a sudden calamity that strikes children at the age of 2 or 3 but
a developmental problem that can be traced back to infancy. That alone should help allay the suspicion that autism is caused
by vaccines or pollutants that kids encounter later in childhood. But the new findings say less about the causes of autism
than about its dynamics. The current study focuses on the first year of life, but the trouble isnt confined to that period.
Other recent studies suggest that the early growth spurt is followed by several years of slower expansion, giving the autistic
child an adult-size brain by the age of 4 or 5. During adolescence and adulthood, autistic brains are generally no larger
than normal ones. Unfortunately, they exhibit a range of other anomalies, including dense clusters of underdeveloped cells
in the hippocampus and amygdalastructures that are critical for integrating emotional and sensory information.
Does rapid
growth actually cause all this damage? Its still an open question. The abnormal growth patterns give you a clue that something
is amiss, says Dr. Margaret Bauman, a neurologist at Harvard Medical School and the LADDERS Autism Research Foundation, but
we can only guess at the underlying process. Courchesne believes it can be summed up in three words: growth without guidance.
Normal brain development is not a monologue but a dialogue, in which the brain generates neural circuits and the childs experiences
determine which ones survive. The first year of life is a critical period for this experience-guided growthand its not hard
to see how a sudden shift into high gear might derail it. The brains circuitry would expand haphazardly as cell growth outpaced
experience, creating a chronic sensory overload. Courchesne hopes researchers will now confirm the dangers of unregulated
brain growth by inducing it experimentally in animals. Once we know what causes this growth defect, he says, it may be possible
to use biological treatments to counter it.
The more
immediate goal is simply to recognize autism at earlier stages, and to give affected kids the support they need to grow and
learn and cope. Will the new findings advance that cause? Dr. Janet Lainhart, an autism expert at the University of Utah,
is skeptical. The findings... are most useful to researchers attempting to define the underlying developmental neuropathology
of autism, she writes in |a commentary on the San Diego study, rather than to physicians trying to identify young children
with autism. Thats because rapid head growth can signal other childhood maladies, including tumors and hydrocephalus, and
often means nothing at all. Lainhart calculates that if doctors used head circumference as a screening test for autism, they
would pick up 60 healthy children for every autistic one. Courchesne concedes the point, but he still believes its prudent
for pediatricians to monitor head growth. The worlds oldest measurement tool still has the power to amaze, he says. It may
not provide a definitive diagnosis, but its inexpensive, noninvasive and objectiveand most of the concerns it raises can quickly
be resolved. Where autism is concerned, thats still as good a goal as any.
© 2003 Newsweek, Inc.
http://www.msnbc.com/news/941426.asp?0cv=CB20&cp1=1#BODY
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ALEXITHYMIA is the inability to talk about feelings due to
a lack of emotional awareness. Extreme cases are associated with a broad range of psychopathologies, including somaticization
disorder, Asperger's syndrome, post-traumatic stress disorder, bulimia nervosa and narcotics dependency. However, the term
is used principally when the emotional disorder occurs on its own. More info and links on my "Links" page. (Thanks
to my sister Margo for bringing this to my attention.)
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ANGELMAN Syndrome is a neurogenetic disorder first described by
English Physician Harry Angelman in 1965. The condition was considered to be extremely rare--indeed many physicians doubted
its existence -- until the 1980s when a deletion on the maternal 15th chromosome was discovered to be the cause of Angelman
Syndrome in a majority of cases.
The incidence of AS is unknown as there are no published epidemiological studies.
In the United States, the Angelman Syndrome Foundation is aware of approximately 1,000 individuals, so the disorder is not
extremely rare. AS has been reported throughout the world among divergent racial groups. In North America, the great majority
of known cases seem to be of Caucasian origin. The exact incidence of AS is unknown and estimate of between 1 in 15,000 to
1 in 30,000 seems reasonable.
Classic features of Angelman Syndrome include a stiff jerky gait; severe developmental
delay; absent speech; happy demeanor; hypopigmented skin; a protruding tongue; and seizures. Children with Angelman Syndrome
are also reported to display a fascination with water and plastic, and many experience sleep disturbances.
************************************************************
APHASIA is a neurological disorder caused by damage to the
portions of the brain that are responsible for language. Primary signs of the disorder include difficulty in expressing oneself
when speaking, trouble understanding speech, and difficulty with reading and writing. Aphasia is not a disease, but a symptom
of brain damage. Most commonly seen in adults who have suffered a stroke, aphasia can also result from a brain tumor, infection,
head injury, or dementia that damages the brain. It is estimated that about 1 million people in the United States today suffer
from aphasia. The type and severity of language dysfunction depends on the precise location and extent of the damaged brain
tissue.
Generally, aphasia can be divided into four broad categories: (1)
Expressive aphasia involves difficulty in conveying thoughts through speech or writing. The patient knows what he
wants to say, but cannot find the words he needs. (2) Receptive aphasia involves difficulty understanding spoken
or written language. The patient hears the voice or sees the print but cannot make sense of the words. (3) Patients with anomic
or amnesia aphasia, the least severe form of aphasia, have difficulty in using the correct names for particular
objects, people, places, or events. (4) Global aphasia results from severe and extensive damage to the language areas
of the brain. Patients lose almost all language function, both comprehension and expression. They cannot speak or understand
speech, nor can they read or write.
Is there any treatment?
In some instances, an individual will completely
recover from aphasia without treatment. In most cases, however, language therapy should begin as soon as possible and be tailored
to the individual needs of the patient. Rehabilitation with a speech pathologist involves extensive exercises in which patients
read, write, follow directions, and repeat what they hear. Computer-aided therapy may supplement standard language therapy.
What is the prognosis?
The outcome of aphasia is difficult to predict
given the wide range of variability of the condition. Generally, people who are younger or have less extensive brain damage
fare better. The location of the injury is also important and is another clue to prognosis. In general, patients tend to recover
skills in language comprehension more completely than those skills involving expression.
What research is being done?
The NINDS and the National Institute
on Deafness and Other Communication Disorders conduct and support a broad range of scientific investigations to increase our
understanding of aphasia, find better treatments, and discover improved methods to restore lost function to people who have
aphasia.
APRAXIA OF SPEECH is a neurologically-based motor planning speech
disorder that effects a very small number of children. Children with apraxia have:
~Extreme difficulty translating
their thoughts into correct sequence of movements of their mouth, tongue, and lips.
~Speech that is very limited and unclear,
making it difficult for others to understand the child, even their own families.
Childhood Apraxia of Speech is not
something that can be 'outgrown'. With early speech therapy provided by a trained speech-language pathologist, many children
are capable of learning to speak clearly and communicate effectively. Without the necessary and appropriate therapy, children
with apraxia may never speak clearly and experience a lifetime of frustration.
***********************************************************
ASPERGER'S Syndrome is a PDD characterized by impairment in social
interaction, development of restricted, repetitive patterns of behavior, interests, and activities. In contrast to Autism,
there are usually no clinically significant delays in language or cognition. As with Autism, it appears to be more common
in males. Onset is later than what is seen in Autism, or at least recognized later. A large number of children are diagnosed
between the ages of 5 and 9. Motor delays, clumsiness, social interaction problems, and idiosyncratic behaviors are
also seen.
Aspergers is not easily recognizable - in fact, many children are misdiagnosed with other neurological
disorders such as Tourette's Syndrome or Autism. More frequently, children are misdiagnosed with Attention Deficit(and Hyperactivity)
Disorders (ADD & ADHD), Oppositional Defiant Disorder(ODD), or Obsessive-Compulsive Disorder (OCD).
These errors
in diagnosis lead to a delay in treatment of the disorder. Many meds and natural remedies are used to treat multiple neurological
and pervasive developmental disorders. Treatments vary to a great degree with the individual person - no single medication
or remedy works for everyone. Because it is so new and so difficult to
diagnose, our society is ill-equipped to deal with
the special educational needs of children afflicted with Aspergers.
People with Asperger syndrome find it more difficult to read the signals which most of us take
for granted. As a result they find it more difficult to communicate and interact with others. Asperger syndrome is a form of autism, a condition that affects the way a person communicates and relates to others. A number of traits of autism are common to
Asperger syndrome including:
- difficulty
in social relationships
- difficulty
in communicating
- limitations in imagination and creative
play
However,
people with Asperger syndrome usually have fewer problems with language than those with autism, often speaking fluently though
their words can sometimes sound formal or stilted. Because many children with Asperger Syndrome may not have (or appear to
have) learning disabilities, many enter mainstream school and, with the right support and encouragement, can make good progress
and go on to further education and employment.
Asperger
syndrome shares many of the same characteristics as autism. The key characteristics are:
Difficulty with social relationships
Unlike the person with 'classic' autism, who often appears withdrawn and uninterested in the world around them, many people
with Asperger syndrome want to be sociable and enjoy human contact. They do still find it hard to understand non-verbal signals,
including facial expressions, which makes it more difficult for them to form and maintain social relationships with people
unaware of their needs.
Difficulty with communication
People with Asperger syndrome may speak fluently but they may not take much notice of the reaction of the people listening
to them; they may talk on and on regardless of the listener's interest or they may appear insensitive to their feelings.
Despite
having good language skills, people with Asperger syndrome may sound over-precise or over-literal - jokes can cause problems
as can exaggerated language, turns of phrase and metaphors. A person with Asperger syndrome may be confused or frightened
by a statement like 'she bit my head off'. In order to help a person with Asperger syndrome to understand you, keep your sentences
short - be clear and concise.
Limitations in imagination
While they often excel at learning
facts and figures, people with Asperger syndrome find it hard to think in abstract ways. This can cause problems for children
in school where they may have difficulty with certain subjects such as literature or religious studies.
Special interests
People with Asperger syndrome often develop an almost obsessive interest in a hobby or collecting. Usually their interest
involves arranging or memorising facts about a special subject, such as train timetables. With encouragement interests can
be developed so that people with Asperger syndrome go on to study or work in their favourite subjects.
Love of routines
People with Asperger syndrome often find change upsetting. Young children may impose their routines, such as insisting
on always walking the same route to school. At school, they may get upset by sudden changes, such as an alteration to the
timetable. People with Asperger syndrome often prefer to order their day according to a set pattern. If they work set hours
then any unexpected delay, such as a traffic hold-up, or a late train, can make them anxious or upset.
These
are the main features of the condition, but because every person is an individual, these characteristics will vary greatly
and some may be demonstrated more strongly than others.
What causes Asperger syndrome?
The causes of autism and Asperger syndrome are still being investigated. Many
experts believe that the pattern of behaviour from which Asperger syndrome is diagnosed may not result from a single cause.
There is strong evidence to suggest that Asperger syndrome can be caused by a variety of physical factors, all of which affect
brain development - it is not due to emotional deprivation or the way a person
Is there a cure?
Asperger
syndrome is a developmental condition affecting the way the brain processes information and there is no 'cure'; children with
Asperger syndrome become adults with Asperger syndrome. Much can be achieved to make life less challenging with appropriate
education and support.
With
time and patience people with Asperger syndrome can be taught to develop the basic skills needed for everyday life, such as
how to communicate appropriately with people.
The importance of early diagnosis
Because
the condition of people with Asperger syndrome is not as marked as those with autism, they may not be diagnosed for a long
time. This can mean that their particular needs may go unrecognised and parents may blame themselves, or worse still blame
their child for their unusual behaviour.
What does the future hold?
At
present, there are few facilities specifically for children with Asperger syndrome. Some children are in mainstream schools
where their progress depends on the support and encouragement of parents, carers and teachers. Some children with Asperger
syndrome go to specialist schools for children with autism or learning disabilities.
Because
their disability is often less obvious than that of someone with autism, a person with Asperger syndrome is, in a sense, more
vulnerable. They can, sadly, be an easy target for teasing or bullying at school.
As
they get older, they may realise that they are different from other people and feel isolated and depressed. People with Asperger
syndrome often want to be sociable and are upset by the fact that they find it hard to make friends.
But
the future for people with Asperger syndrome does not have to be bleak. Adults with Asperger syndrome can and do go on to
live fulfilling lives, to further education and employment and to develop friendships. In
the workplace, people with Asperger syndrome can offer a great deal - punctuality, reliability and dedication - though informed
and understanding employers and colleagues are essential.
***********************************************************
ATTENTION DEFICIT HYPERACTIVITY DISORDER, often called ADD or ADHD,
is a diagnostic label that is given to children and adults. ADD impacts about (5%)of students in the United States. Six or
more of the following symptoms of inattention have persisted for at least six months to a degree that is maladaptive and inconsistent
with developmental level:
~Often fails to give close attention to details or makes careless mistakes in schoolwork,
work, or other activities
~Often has difficulty sustaining attention in tasks or play activities
~May not seem to
listen when spoken to directly
~Often does not follow through on instructions and fails to finish schoolwork, chores,
or duties in the workplace (not due to oppositional behavior or failure to understand instructions)
~Often has difficulty
organizing tasks and activities
~Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental
effort (such as school work or homework)
~Often loses things necessary for tasks or activities(e.g., toys, school assignments,
pencils, books, or tools)
~Is often easily distracted by extraneous stimuli
~Is often forgetful in daily activities
Six or more of the following symptoms of hyperactivity/impulsivity have persisted for at least six months to a degree
that is maladaptive and inconsistent with developmental level:
Hyperactivity
~Often fidgets with hands or feet
or squirms in seat
~Often leaves seat in classroom or in other situations in which remaining seated is expected
~Often
runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults, may be limited to subjective
feelings of restlessness)
~Often has difficulty playing or engaging in leisure activities quietly
~Is often "on the
go" or often acts as if "driven by a motor"
~Often talks excessively
Impulsivity
~Often blurts out answers
before questions have been completed
~Often has difficulty with turn-taking
~Often interrupts or intrudes on others
(e.g. butts into conversations or games)
Some hyperactive, impulsive or inattentive symptoms that cause impairment
may be present before 7 years of age. Some impairment from the symptoms is present in two or more settings (e.g.,at school
or work and at home).
There must be clear evidence of clinically significant impairment in social, academic, or occupational
functioning .
The symptoms do not occur exclusively during the course of a pervasive developmental disorder, schizophrenia,
or other psychotic disorder, and are not better accounted for by another mental disorder (e.g., mood disorder,anxiety disorder,
dissociative disorder, personality disorder.)
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AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER-NOS (not otherwise
specified)are developmental disabilities that share many of the same characteristics. Usually evident by age three, autism
and PDD-NOS are neurological disorders that affect a child's ability to communicate, understand language, play, and relate
to others. In the diagnostic manual used to classify disabilities, the DSM-IV (American Psychiatric Association, 1994), "autistic
disorder" is listed as a category under the heading of "Pervasive Developmental Disorders." A diagnosis of autistic disorder
is made when an individual displays 6 or more of 12 symptoms listed across three major areas: social interaction, communication,and
behavior. When children display similar behaviors but do not meet the criteria for autistic disorder, they may receive a diagnosis
of Pervasive Developmental Disorder-NOS (PDD not otherwise specified).
Due to the similarity of behaviors associated
with autism and PDD, use of the term pervasive developmental disorder has caused some confusion among parents and professionals.
However, the treatment and educational needs are similar for both diagnoses.
Autism and PDD are four times more common
in boys than girls. Their causes are unknown.
CHARACTERISTICS
Some or all of the following characteristics
may be observed in mild to severe forms:
- Communication problems (e.g., using and understanding language);
-
Difficulty in relating to people, objects, and events;
- Unusual play with toys and other objects;
- Difficulty with
changes in routine or familiar surroundings; and
- Repetitive body movements or behavior patterns.
Children with
autism or PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have limited language
that often includes repeated phrases or conversations. People with more advanced language skills tend to use a small range
of topics and have difficulty with abstract concepts. Repetitive play skills, a limited range of interests, and impaired social
skills are generally evident as well. Unusual responses to sensory information are also common. Some examples are: loud noises,
lights, certain textures of food or fabrics.
Autism has no single cause. Researchers believe several genes, as well
as environmental factors such as vaccines, viruses or chemicals, contribute to the disorder. Studies of people with autism
have found abnormalities in several regions of the brain, including the cerebellum, amygdala, hippocampus, septum, and mamillary
bodies. Neurons in these regions appear smaller than normal and have stunted nerve fibers, which may interfere with nerve
signaling. These abnormalities suggest that autism results from disruption of normal brain development early in fetal development.
Other studies suggest that people with autism have abnormalities of serotonin or other signaling molecules in the brain. While
these findings are intriguing, they are preliminary and require further study. The early belief that parental practices are
responsible for autism has now been disproved.
In a minority of cases, disorders such as fragile X Syndrome, tuberous
sclerosis, untreated phenylketonuria (PKU), and congenital rubella cause autistic behavior. Other disorders, including Tourette
Syndrome, learning disabilities, and attention deficit disorder, often occur with autism but do not cause it. For reasons
that are still unclear, about 20 to 30 percent of people with autism also develop epilepsy by the time they reach adulthood.
While people with schizophrenia may show some autistic-like behavior, their symptoms usually do not appear until the late
teens or early adulthood. Most people with schizophrenia also have hallucinations and delusions, which are not found in autism.
Recent studies strongly suggest that some people have a genetic predisposition to autism. Scientists estimate that,
in families with one autistic child, the risk of having a second child with the disorder is approximately five percent, or
one in 20, which is greater than the risk for the general population. Researchers are looking for clues about which genes
contribute to this increased susceptibility. In some cases, parents and other relatives of an autistic person show mild social,
communicative, or repetitive behaviors that allow them to function normally but appear linked to autism. Evidence also suggests
that some affective, or emotional disorders, such as manic depression, occur more frequently than average in families of people
with autism.
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BI-POLAR DISORDER
The clinical presentations of Bi-Polar
disorder are broad and include mania, hypomania and psychosis. Frequently associated comorbid conditions include substance
abuse and anxiety disorders. Patients with acute mania must be evaluated urgently. Bipolar disorder is characterized by variations
in mood, from elation and/or irritability to depression. This disorder can cause major disruptions in family, social and occupational
life.
Bipolar I disorder is defined as episodes of full mania alternating with episodes of major depression. Patients
with mania often exhibit disregard for danger and engage in high-risk behaviors such as promiscuous sexual activity, increased
spending, violence, substance abuse and driving while intoxicated. Bipolar I disorder is typically diagnosed when patients
are in their early 20s. Manic symptoms can rapidly escalate over a period of days and frequently follow psychosocial stressors.
Bipolar II disorder is characterized by recurrent episodes of major depression and hypomania. Hypomania is manifested
by an elevated and expansive mood. The behaviors characteristic of hypomania are similar to those of mania but without gross
lapses of impulse and judgment. Hypomania does not cause impairment of function and may actually enhance function in the short
term. It is typically brought to medical attention when the patient is depressed. A careful history will usually illuminate
the diagnosis.
Some depressed patients exhibit hypomania when given antidepressants. This variation is sometimes referred
to as bipolar III disorder. The criteria for major depressive episode and manic episode are described in the Diagnostic and
Statistical Manual of Mental Disorders, 4th ed. (DSM-IV). You will find a link for the DSM-IV on the links page.
The
prevalence of bipolar disorder does not differ in males and females. It affects persons of all ages. The incidence of bipolar
disorder is increased in first-degree relatives of persons with the disorder, as is the incidence of other mood disorders.(One
study revealed a 13 percent risk of bipolar disorder among offspring of persons with the disorder. The risk of unipolar depression
was 15 percent, and the risk of schizoaffective disorder was 1 percent. Because of the familial association, genetic counseling
should be offered to patients and their families as part of comprehensive educational and supportive approaches.
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CENTRAL AUDITORY PROCESSING DISORDER
People know that we
hear with our ears, but we should all remember that it is our brain that makes use of the information we hear. If the brain
is unable to correctly process what is said, the message is lost or misunderstood. This is known as central auditory processing
disorder (CAPD).Studies have shown that we begin to develop our listening skills even before we are born, and that one day-old
infants with normal hearing can already identify the difference between certain sounds. Continued development of good hearing
skills is critical for successful learning.
Unfortunately, all children may not have good listening abilities. When
a child's brain has difficulty processing speech, he or she may need special help to learn to listen more effectively. Central
auditory processing disorder may be described as difficulty in processing auditory information although hearing sensitivity
and intellectual ability are unimpaired.
There are many causes of Central Auditory Processing Disorder, or CAPD. One
cause is middle ear infections or otitis media. A large percentage of children who have CAPD also have a significant
history of ear infections during the first two years of life. Frequent ear infections may also be associated with hearing
loss and may cause delayed language and speech development.
To try to understand what effect this has, try to imagine
learning a foreign language while wearing earplugs.This is a little like what children with CAPD face in the classroom on
a daily basis. This said, it's easy to understand how they could fall behind academically,lose self-esteem, or be labeled
as having behavioral problems.
Some common symptoms associated with CAPD are:
~not listening carefully to
instructions
~being easily distracted by background noise
~difficulty with phonics or speech sounds, spelling and/or
reading
~poor learning through the auditory or hearing channel behavioral problems
~below average academic performance
This disorder is identified by a specially trained audiologist. If your child exhibits two or more of the symptoms
listed, make an appointment with a specialist as soon as possible. Screening tests are available for children as young as
three years. A child five years or older may be administered a full CAP test battery. The CAP test battery should not only
measure hearing, but also should identify the presence or absence of CAPD. The audiologist should then classify the type and
severity of the child's CAP disorder, and provide recommendations to help the child in school and at play.
Some management
techniques for central auditory processing disorder that may be suggested:
~special language treatment such as sound
blending and auditory memory exercises
~listening training in the presence of background noise
~self help techniques
to improve overall communication
~activities which may be used by the teacher in the classroom or by parents at home
Enhancement
of the auditory environment which may include:
~preferred seating to enable the child to easily see the teacher's
face and the blackboard
~acoustic room treatment to reduce background noise and the echo or reverberation
~use of
FM auditory enhancement systems
With these systems the teacher wears a wireless microphone which transmits her speech
signal directly to the child's ear or through a strategically placed speaker, while she moves around the classroom.
************************************************************
DANDY WALKER
What is Dandy-Walker Syndrome?
Dandy-Walker
Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement)
and the fluid filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small
channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete
absence of the cerebellar
vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An
increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present. The
syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development
and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability,
vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky
movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems
with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently
associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area
between the two cerebral hemispheres, and malformations of the heart, face, limbs, fingers and toes.
Is there any treatment?
Treatment for individuals with Dandy-Walker Syndrome generally consists of
treating the associated problems, if needed. A special tube to reduce intracranial pressure may be placed inside the skull
to control swelling. Parents of children with Dandy Walker Syndrome may benefit from genetic counseling if they intend to
have more children.
What is the prognosis?
Children with Dandy-Walker Syndrome may never have normal intellectual development,
even when the hydrocephalus is treated early and correctly. Longevity depends on the severity of the syndrome and associated
malformations. The presence of multiple congenital defects may shorten life span.
What research is being done?
The NINDS conducts and supports a wide range of studies that explore the complex
mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding
abnormal brain development and offers hope for new ways to treat and prevent developmental brain disorders such as Dandy-Walker
Syndrome.
Link for organizations: http://www.ninds.nih.gov/disorders/dandywalker/dandywalker.htm#Organizations
************************************************************
DYSARTHRIA
Dysarthria is a speech disorder that is due to a weakness or incoordination
of the speech muscles. Speech is slow, weak, imprecise or uncoordinated. It can affect both children and adults. "Childhood
dysarthria" can be congenital or acquired. It is often a symptom of a disease, such as cerebral palsy, Duchenne muscular dystrophy,
myotonic dystrophy, Bell palsy. In both adults and children, it can result from head injury.
In adults, dysarthria can be caused by stroke, degenerative
disease (Parkinson's, Huntington's, amyotrophic lateral sclerosis, multiple sclerosis, myasthenia gravis), infections (meningitis),
brain tumours, and toxins (drug or alcohol abuse, lead poisoning, carbon monoxide, etc.).
In order for speech to be clear, a number of subsystems must work
together. A weakness in any one of the systems can result in dysarthria. So can an incoordination between systems. The lungs
(respiratory subsystem) supply the air necessary to power the speech system. The voice box or larynx (laryngeal) sets the
air vibrating and creates voice. The soft palate (velopharyngeal) acts a door between the oral and nasal cavities and channels
air to one or both cavities resulting in different sound quality. The lips, tongue, teeth, and jaw (articulatory) move to
further channel and shape the sounds into the various vowels and consonants.
If the respiratory subsystem is weak, then speech may be too quiet
and produced one word at a time. If the laryngeal system is weak, speech may be breathy, too quiet and slow. If the velopharyngeal
subsystem is not working, speech may sound too nasal or nasal sounds may be misssing. If the articulatory subsystem is not
working, speech may sound slurred, may have many errors and may be slow and laboured.
Therapy for dysarthria focuses on maximizing the function of all
systems. Compensatory strategies are often used. Individuals with dysarthria may be advised to take frequent pauses for breath,
to over-articulate, or to pause before important words to make them stand out. If there is muscle weakness, they may benefit
from performing oro-facial exercises. This helps to strengthen the muscles of the face and mouth that are used for speech.
For some people, speech is not a viable option. Alternative or augmentative
systems are frequently used. These can be low tech or high tech. An example of a low tech system would be an alphabet board.
The individual points to letters to spell out messages. "Pic-syms" are picture symbols, black and white line drawings with
print that can be combined on a communication board or book. The individual points to the appropriate picture or combination
of pictures to communicate. High tech systems include computers and voice output devices. A regular computer keyboard, monitor
and word processor can be used to type out and display messages. Programs that predict words and sentences can speed up this
method of communicating. Some indivduals are unable to read and have a computer system that uses symbols - they select a symbol
and the printed word is produced. Voice output systems are similar to the computer setups already described but rather than
having the printed word as output, the spoken word is produced. Simple devices have the ability to let an individual access
a limited number of pre-recorded phrases by pushing the appropriate key. More complex systems allow for creative productions.
Any of these systems can be used as a back-up by individuals who do have some functional speech. There are times when it is
too tiring or too time-consuming to use speech. Then the alternative system is used.
Most dysarthric speakers need more time to get their message across.
It helps to allow them extra time and to listen face to face. When you haven't understood what they've said, it's better to
say so than to pretend you have understood. It helps to repeat the part that you did understand as a question, so they only
have to repeat the part you didn't get. For example, if you hear "I would like a XX", rather than saying pardon and getting
a repetition that may sound the same, try asking "You would like a... ?" with rising inflection, or "What would you like?"
If a person is using an augmentative device, consider it to be valid and equal to speech. Don't insist that they "say it"
if you have understood they message they sent by the augmentative system.
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DYSCALCULIA should be suspected under these circumstances:
~Difficulty
with the abstract concepts of time,direction.
~Inability to recall schedules,and sequences of pastor future events.
~Unable
to keep track of time.
~Inconsistent results in addition, subtraction, multiplication and division.
~Poor mental math
ability.
~Inability to grasp and remember math concepts, rules, formulas, sequence order of operations, and basic addition,
subtraction, multiplication and division facts.
~Poor long term memory retention & retrieval) of concept mastery:
may be able to perform math operations one day, but draw a blank the next.
~May be able to do book work but fails all
tests.
~May have poor athletic coordination, difficulty keeping up with rapidly changing physical directions like in aerobic,
dance, and exercise classes.
What you should know about dyscalculia:
- Dyscalculia refers to a wide range of learning difficulties
involving math skills.
- There is no single form of dyscalculia - difficulties
can vary from person to person and
can change throughout a lifetime.
Two major areas of weakness that are responsible
for learning disabilities in math are:
- Visual-spatial difficulties - which result in a
person having trouble processing what
the eye sees.
- Language processing difficulty - which result in
a person having trouble processing
and making sense of what the ear hears.
Like all learning disabilities, dyscalculia is a
life-long challenge. Using alternate
learning methods, people with dyscalculia can learn how to achieve success.
Young
Children
. Difficulty learning to count
.
Trouble recognizing printed numbers
. Difficulty tying together the idea of a number (4) and how it
exists in the world (4 horses, 4 cars, 4 children)
. Poor memory for numbers
. Trouble organizing things in a logical way- putting round
objects in one place and square ones in another
School-Age
Children
. Trouble learning math facts (addition, subtraction,
multiplication, division)
. Difficulty developing math problem -solving skills
. Poor long term memory for math functions
. Not familiar with math vocabulary
.
Difficulty measuring things
. Avoiding games that require strategy
Teenagers & Adults
. Difficulty estimating costs like groceries bills
. Difficulty learning math concepts beyond the basic math facts
. Poor ability to budget or balance a checkbook
. Trouble with concepts of time, such as sticking to a schedule
or
approximating time
.
Trouble with mental math
.
Difficulty finding different approaches to one problem
*******************************************************
DYSGRAPHIA is defined as a difficulty in automatically remembering
and mastering the sequence of muscle motor movements needed in writing letters or numbers. This difficulty is out of harmony
with the person's intelligence, regular teaching instruction, and (in most cases) the use of the pencil in non-learning tasks.
It is neurologically based and exists in varying degrees, ranging from mild to moderate. It can be diagnosed, and it can be
overcome if appropriate remedial strategies are taught well and conscientiously carried out.
Dysgraphia can be seen
in:
~letter inconsistencies
~mixture of upper/lower or print/cursive letters
~irregular letter sizes and shapes
~unfinished letters
Dysgraphia is NOT:
~visual-motor delay
~laziness
~not trying
~sloppy writing
~general sloppiness
~careless writing
Dysgraphia is defined as a difficulty in automatically remembering
and mastering the sequence of muscle motor movements needed in writing letters or numbers. This difficulty is out of harmony
with the person's intelligence, regular teaching instruction, and (in most cases) the use of the pencil in non-learning tasks.
It is neurologically based and exists in varying degrees, ranging from mild to moderate. It can be diagnosed, and it can be
overcome if appropriate remedial strategies are taught well and conscientiously carried out. An adequate remedial program
generally works if applied on a daily basis. In many situations, it is relatively easy to plan appropriate compensations to
be used as needed.
Dysgraphia is an inefficiency which seldom exists in isolation
without other symptoms of learning problems. While it may occasionally exist alone, it is most commonly related to learning
problems involved within the sphere of written language. Difficulty in writing is often a major problem for students, especially
as they progress into upper elementary and into secondary school. Rosa Hagan has stated, "Inefficiency in handwriting skills
provides a barrier to learning, whereas efficiency in basic handwriting skills provides a tool for learning. Once this tool
is established, it can help reinforce many other areas kids are having difficulties with."
Difficulties with writing often leads to major misunderstandings
by teachers and parents, and consequently, to many frustrations for the student. This is especially true for the bright, linguistically
fast student who encounters a major stumbling block when dealing with written expression due to the lack of smooth, efficient
automaticity in letter and word formation. These students struggle to translate their thoughts and knowledge, which then denies
their teachers the opportunity to understand what they know.
An astute teacher or parent may suspect dysgraphia in a student
by observing writing performances. All too often, however, the student's performance is interpreted as poor motivation, carelessness,
laziness, or excessive speed. While these observations may be very real, they are on the surface, and the underlying cause
may be a dysgraphic pattern which is not within the student's control. Specific symptoms which may be noted include:
.Cramped fingers on writing tool
.Odd wrist, body and paper
positions
.Excessive erasures
.Mixture of upper and lower case letters
.Mixture of printed and cursive letters
.Inconsistent letter formations and slant
.Irregular letter sizes and shapes
.Unfinished cursive letters
.Misuse
of line and margin
.Poor organization on the page
.Inefficient speed in copying
.General illegibility
.Decreased
speed of writing
.Decreased speed of copying
.Inattentiveness about details when writing
.Frequently needs verbal
cues and sub-vocalizing
.Relies heavily on vision to monitor what the hand is doing during writing
.Slowly implements
verbal directions that involve sequencing and planning
Compensations for the Dysgraphic Student
1. Understanding:
Understand the student's inconsistencies and
performance variabilities.
2. Print or cursive:
Allow the student to use either form. Many dysgraphic students
are more comfortable with manuscript printing.
3. Computer:
Encourage student to become comfortable using
a word processor on a computer. Students can be taught as early as 1st grade to type sentences directly on the keyboard.
4.
Encourage consistent use of spell checker on the computer to decrease the overall demands of the writing task.
5. Encourage
use of an electronic spell checker with a speaking component to decrease the overall demands. If student has concurrent reading
problems, the speaking component is necessary because it will read/say the words.
6. Have student proofread papers after
a delay and use strategies for editing. Student may need help to develop efficient editing techniques.
7. If getting
started is a problem, encourage visual pre-organization strategies, such as mind mapping.
8. Allow extra time for writing
activities.
9. If necessary, shorten writing assignments.
10. Allow student to tape assignment and/or take oral tests.
11. Reinforce the positive aspects of student's efforts.
12. Be patient.
13. Encourage student to be patient with
him/herself
Message to Students*
Are you frustrated with written work?
Do your teachers
and parents sometimes think you're lazy?
Do you work really hard, but your paper is still sloppy?
Is the
beginning of your paper neater than the rest of your paper?
Can you only write neatly if you have lots of extra
time, but then your hand gets very tired?
Do you have more difficulty writing neatly when you are thinking hard
about what you are writing?
Maybe then, you have dysgraphia.
Dysgraphia is a Latin word. Dys- means "difficulty with." Graphia
refers to the writing process. It is one of the many aspects of a learning disability or a learning difference. It has absolutely
nothing to do with how smart you are.
Often, dysgraphia is misunderstood. Parents and teachers may think
you are lazy or that you don't care about neatness. This means you have to try even harder to show that you do care. Here
are some suggestions:
.Type your papers as often as possible.
.Always proofread
your paper.
.Wait before proofing. It is easier to notice your errors if you've had a break.
.Edit your paper to increase
your use of larger vocabulary words and make sure you explain your ideas clearly.
.Support your ideas and your statements.
.Use a thesaurus for word variation.
If you have difficulty getting your ideas organized or getting
started, try these steps:
.Use pre-organization strategies such as brainstorming and mind
mapping. Use of Post-it notes and/or electronic outline programs can make the task much easier.
.If you're really stuck, "talk" out your paragraph into a tape
recorder, then type what you said.
It is true that these steps require more time. However, by following
them and creating your own related steps, you will be showing your parents and teachers (and yourself, too) that you do care.
If you are truly dysgraphic, you cannot change that fact because
it is part of your neurological makeup and part of your learning difference.
It is basically up to you. You must be aware, however, that you
may encounter adults who do not understand that you really are trying hard, and it takes you extra time to write your good
ideas. You will need to assert yourself and in a very patient manner explain your situation and explain what compensations
you need to produce a final product that matches your higher thinking skills.
What happens if you're dyslexic and dysgraphic?
If you happen to be both dyslexic and dysgraphic, then you probably
have difficulty with the mechanical aspects of writing as well as the spelling. This combination of problems does NOT have
to limit your writing experiences, nor does it have to limit your creativity when writing. But you will definitely need to
use a computer and a spell checker. If spelling is a very significant problem, then the spell checker may not be able to recognize
your words. What do you do then? At that point you need to use technology which will recognize the words based on the sounds.
Contact the Franklin Language Master company to investigate their products (1/800/BOOKMAN)
EXAMPLE:
The following writing story was written by a 7th grade student
who is both dyslexic and dysgraphic. It seems almost impossible for him to think about content at the same time he thinks
about spelling and writing mechanics. Because the process of writing is so very laborious for him, he types all of his papers.
His first step was to type his ideas, fluently, while they "flowed". His assignment was "write about a bumpy ride". He was
given no other cues. He typed,
the way I descride a bumby ride is like wothgan mowtsarts mowsek.
Eshe bumby rowd is like a song. Eshe bumb is the a note eche uncon at the same time ste is. That was the mewstere to mowts
mowsuk it was vare metereus and unperdekdable. So the next time you drive down a bumby theak of mowtsart.
His next task was to use his Franklin Language Master 6000 and
begin to proof and correct the story. Because he has a solid background in phonics, especially multisensory techniques, he
was able to take the words one at a time, sound them out, and correct their spelling. It was a long process, but the end result
is a fine example of the extent of his high level thinking. What is amazing, is that he can correct the spelling, but he cannot
think of the sounds and the content at the same time. For him, he must separate the two processes. His corrected story is,
The way I describe a bumpy ride is like Wolfgang Mozart's music.
Each bumpy road is like a song. Each bump in the road is a note. Each bump is uncontrolled at the same time it still is controlled.
That was the magic to Mozart's music. It was very mysterious and unpredictable. So the next time you drive down a bumpy road,
think of Mozart.
Dealing with writing problems is also both uncontrollable and controllable.
Going slowly, developing skills, and using compensations can create the magic of good creative communication through writing.
************************************************************
DYSLEXIA is a term that has been loosely applied to reading
disabilities. Specific definitions for dyslexia vary with disciplines.
Those in medicine define dyslexia as a condition resulting from neurological, maturational, and genetic causes, while those
in psychology relate dyslexia on the basis of the specific reading problems evidenced and give no reference to causation.
All disciplines would probably agree that dyslexia is evidenced by persons of otherwise normal intellectual capacity who have
not learned to read despite exposure to adequate instruction. The diagnosis of dyslexia usually begins with an awareness by
parents or teachers that a problem in reading exists. A physician is often the first diagnostician to explore the nature of
the difficulty. The physician should investigate the cause of the reading problem by conducting a complete physical exam and
obtaining a comprehensive health history. If indicated, the child should be referred for a neurological examination. If dyslexia
is suspected, the physician should refer the child for further evaluation and treatment by a specialist in psychoeducational
diagnosis.
SIGNS OF DYSLEXIA:
~Appears bright, highly intelligent, & articulate, but unable to read, write,
or spell at grade level.
~Labeled lazy, dumb, careless, immature, or "not trying hard enough."
~High in IQ, yet may
not test well academically.
~Feels dumb; has poor self-esteem; hides or covers up weaknesses with compensations.
~Seems
to "zone out," or daydream a lot; gets easily lost or loses track of time.
~Confused by letters, numbers, words, verbal
explanations, or sequences.
~Reading or writing shows repetitions, transpositions, additions, omissions, substitutions
& reversals in letters, words, and/or numbers.
~Reads aloud well, but can't recall what was read.
~Difficulty
putting thoughts into words; stutters under stress, mispronounces long words, or transposes phrases & words when speaking.
~Difficulty with vision, yet standard eye exams don't reveal a problem.
~Keen-sighted and observant, but may lack
depth perception and peripheral vision.
~Handwriting varies or is illegible.
~Trouble with writing or copying; pencil
grip may be unusual.
~Can be ambidexterous.
~Confuses left/right and over/under.
~Difficulty learning sequenced
information or tasks.
~Can do arithmetic, but not word problems; cannot grasp algebra or higher math.
~Excellent long-term
memory for movies, experiences, locations, & faces.
~Isn't "behind enough" or "bad enough" to be helped in school
setting. ~Can be comedian, trouble-maker, or quiet.
~Easily frustrated or emotional about school, reading, writing, or
math.
~Prone to allergies and ear infections.
~Sleep patterns: can be an extra deep or light sleeper.
~Bedwetting
beyond appropriate age.
~Sensitive, emotional; strives for perfection.
**********************************************************
DYSTHYMIC DISORDER is characterized by chronic depression, but
with less severity than a major depression. The essential symptom for dysthymic disorder is an almost daily depressed mood
for at least two years, but without the necessary criteria for a major depression. Low energy, sleep or appetite disturbances
and low self-esteem are usually part of the clinical picture as well.
People who have dysthymic disorder will often report that they
don't recall ever not feeling depressed, but they may be relatively functional in managing their life, although the symptoms
are severe enough to cause distress and interference with important life role responsibilities. It is important to have a
complete physical to rule out any physical illnesses that might be causing the depression. Also, if the person has a chronic
medical condition that appears to be the cause for the depression (such as any chronic debilitating condition), then the correct
diagnosis might be a Mood Disorder due to a general Medical Condition, even if all the criteria for dysthymic disorder are
met. The question is whether the medical condition is physically causing the depression, rather than creating chronic psychological
distress that is causing the depression.
Despite the long term nature of this type of depression, psychotherapy
is effective in reducing the symptoms of depression, and assisting the person in managing his/her life better. Some individuals
with dysthymic disorder respond well to antidepressant medication, in addition to psychotherapy, so an evaluation for medication
may be appropriate. You should consult your psychologist if you have questions about treatment.
Identifying Dysthymic Disorder
Depression causes changes in thinking, feeling, behavior, and physical
well-being.
Changes in Thinking - Many people experience difficulty with concentration
and decision making. Some people report problems with short term memory, forgetting things all the time. Negative thoughts
and thinking are characteristic of depression. Pessimism, poor self-esteem, excessive guilt, and self-criticism are all common.
Some people have self-destructive thoughts during more serious depression.
Changes in Feelings - Many people report feeling sad for no reason.
Others report that they no longer enjoy activities that they once found pleasurable. You might lack motivation, becoming more
apathetic. You might feel "slowed down" and tired all the time. Sometimes irritability is a problem, and more difficulty controlling
your temper. Often, dysthymic disorder leads to feelings of helplessness and hopelessness.
Changes in Behavior - You might act more apathetic, because that's
how you feel. Some people do not feel comfortable with other people, so social withdrawal is common. Some people experience
a change in appetite, either eating more or less. Because of the chronic sadness, excessive crying is common. Some people
complain about everything, and act out their anger with temper outbursts. Sexual desire may disappear, resulting in lack of
sexual activity. In the extreme, people may neglect their personal appearance, even neglecting basic hygiene. Needless to
say, someone who is this depressed does not do very much, so work productivity and household responsibilities suffer. Some
people have trouble getting out of bed.
Changes in Physical Well-being - We already talked about the negative
emotional feelings experienced during depression, but these are coupled with negative physical emotions as well. Chronic fatigue,
despite spending more time sleeping is common. Some people can't sleep, or don't sleep soundly. These individuals lay awake
for hours, or awaken many times during the night, and stare at the ceiling. Others sleep many hours, even most of the day,
although they still feel tired. Many people lose their appetite, feel slowed down by depression, and complain of many aches
and pains.
Now imagine these symptoms lasting for months. Imagine feeling
this way almost all of the time. This may be dysthymic disorder, if several of these symptoms are present most of the time,
for the past two years. Remember, all of the symptoms do not need to be present! Of course, it's not a good idea to diagnose
yourself. If you think you might be depressed, talk to a psychologist for a consultation. A licensed psychologist can assess
whether you are depressed, and can determine the proper treatment for your depression. Remember, depression is treatable.
Treatment for Dysthymic Disorder
Psychotherapy is the treatment for choice for this psychological
problem. Often, antidepressant medication is also recommended because of the chronic nature of the depression in Dysthymia.
Psychotherapy is used to treat this depression in several ways. First, supportive counseling can help to ease the pain, and
can address the feelings of hopelessness. Second, cognitive therapy is used to change the pessimistic ideas, unrealistic
expectations, and overly critical self-evaluations that create the depression and sustain it. Cognitive therapy can help the
depressed person recognize which life problems are critical, and which are minor. It also helps them to learn how to accept
the life problems that cannot be changed. Third, problem solving therapy is usually needed to change the areas of the person's
life that are creating significant stress, and contributing to the depression. Behavioral therapy can help you to develop
better coping skills, and interpersonal therapy can assist in resolving relationship conflicts.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
ECHOLALIA
Echolalia is the repetition or echoing of verbal utterances
made by another person. According to Barry M. Prizant
(1983), up to 75% of verbal persons with autism exhibit echolalia in some form. There
are two types of echolalia: immediate echolalia and delayed echolalia. Immediate echolalia was once defined as "the meaningless
repetition of a word or word group just spoken by another person" (Fay & Schuler, 1980). However, Prizant & Duchan
(1981) and others have begun to see that echolalia may serve many functions for the person with autism (therefore, it is not
"meaningless"). The researchers determined that immediate echolalia often was used with clear evidence of purposeful communication.
Immediate echolalia appears to tap into the person's short-term memory for auditory input. Immediate echolalia is defined
as the repetition of a word or phrase just spoken by another person. Persons with autism who repeat what you just said (including
the questions you ask) come to mind when we think of immediate echolalia. The child who responds to, "Do you want a cookie?"
with "Do you want a cookie?" may or may not want a cookie. This is the maddening, confusing world of immediate echolalia for
the parent or teacher....."
[found at "Echolalia
and Autism, Gary J. Heffner, M.A., Judevine®
Center for Autism Training at GSSH, July, 2000 ~ Note:
Most of this information is based upon the work and research of Barry M. Prizant, website http://www.barryprizant.com ]
**********************************************************
EXECUTIVE DYSFUNCTION
WHAT ARE THE EXECUTIVE FUNCTIONS?
The foundations for learning are attention, memory, and executive function.
While most parents would immediately have some sense of what "attention" and "memory" mean, they may never have heard of executive
functions. And yet without these functions, so many aspects of our functioning would be impossible or significantly impaired.
Executive functions (EF) are central processes that are most intimately involved
in giving organization and order to our actions and behavior. Many people refer to them as "higher-order" processes or refer
to them as "frontal" or "pre-frontal," but since they govern a number of different domains (cognitive, linguistic, motoric),
and involve pre-frontal and subcortical loops, it may help just to think of them as central processes.
But what are these processes? The whole topic is very controversial, but there
seems to be a consensus that executive functions involve (at the very least):
- planning for the future
- the ability to inhibit
or delay responding
- initiating behavior,
and
- shifting between activities
flexibly
If we break down the skills or functions into subfunctions, we might say that
executive functions tap into the following abilities or skills:
- Goal
- Plan
- Sequence
- Prioritize
- Organize
- Initiate
- Inhibit
- Pace
- Shift
- Self-monitor
- Emotional control
- Completing
We will consider these skills in more detail later in this article, but for
now, it should also be noted that in considering executive functions, we will also be talking about "working memory," which
is not purely an executive function but overlaps executive functions, attention, and memory. Also, although "emotional control"
is included in this list, it is not a purely executive function.
HOW ARE EXECUTIVE FUNCTIONS ASSESSED?
Because there is no uniform agreement on what the executive functions are,
there has been no agreement on how to assess them. If we talk about particular subfunctions, however, it is possible to answer
the question.
Executive functions are generally assessed via neuropsychological tests and
assessments. For any one function or subfunction, there may be a variety of tasks or tests that tap into components.
If you suspect that you, your child, your spouse, or your student has executive
dysfunction (EDF), the appropriate referral would be to a board-certified neuropsychologist. Neuropsychologists are psychologists
who specialize in the relationship between brain and behavior.
STUDENTS WITH EXECUTIVE DYSFUNCTION
If students have deficits in ability to plan, initiate, sequence, sustain,
and pace work, what is likely to happen to them in school?
Think of an academic activity such as writing a big report -- a common source
of frustration for many students. The student who has Executive Dysfunction will have difficulty picking a topic, planning
the project, sequencing the material for the paper, breaking the project down into manageable units with intermediate deadlines,
getting started, and completing the activity. And because these students frequently underestimate how long something will
take, they'll generally leave the project until the night before it's due.
Now consider another academic activity: conducting a laboratory experiment.
In the laboratory, the student has a list of supplies that are needed to run the lab and a set of instructions. If the student
begins the lab before lining up all the supplies, she may find herself having to run to get something at a time when timing
was critical. If she cannot follow sequential steps, she may skip a step and ruin the lab.
THE "TERMINALLY DISORGANIZED" CHILD OR ADULT
How many of us have watched a disorganized or child or adult and assumed that
they were just lazy or that if they really and truly wanted to, they would be more organized? How many of us have wanted to
pull our hair out over the child who never brings home their assignments and materials despite supervision from the teacher,
who never starts the homework without a knockdown-dragout fight, and who when they do finally do their homework, seem to lose
it before it gets handed in to the teacher?
How many of us watched these children and adults suffer day after day and
never thought to get a neuropsychological assessment of their executive functions? Maybe we shook our heads and just "knew"
that the school's proposed behavior modification or incentive plan wasn't going to work, but we couldn't put our finger on
why it wouldn't work, other than to say, "It's not a motivational problem -- he really can't seem to organize himself"?
RECOGNIZE ANYONE YOU KNOW?
The deficits associated with EDF can be in the form of difficulty in organizing
time, difficulty in organizing materials and belongings, difficulty in organizing thoughts, difficulty in initiating tasks,
difficulty in switching flexibly between tasks, difficulty in sustaining focus on the relevant aspects of a stimulus or task,
or any combination of these skills. If you know someone who suffers from disorganization -- books that inexplicably disappear
from desks, lockers, and home, papers that never seem to make it from work to home or back to work or school, school, home,
or work projects that seemingly have no known due date, the mysterious disappearance of all writing instruments into some
great Black Hole, you may know someone with executive dysfunction.
By now, many site visitors will be thinking, "Oh good grief, that's my [son/husband/student/self]
she's describing!"
Others may be wondering, "Wait a minute. I thought all those things were Attention
Deficit Hyperactivity Disorder. What's going on? Are Executive Dysfunction and ADHD the same thing?"
As you will discover if you start to read the research, ADHD and EDF are intimately
connected. EDF has also been found in adults with OCD and it also associated with depression, to name but some of the conditions.
But look at the difference in your own reaction when you thought more broadly about "impulsivity" or "hyperactivity," and
compare that to your reaction when you saw an ability or function represented as a higher-order brain function. When viewed
as executive functions, are you as likely to consider behavior modification as you were before (if you were considering it),
or are you now curious about what kinds of skills-training, accommodations, or interventions might be appropriate to help
a child or adult who has executive dysfunction?
Remember that if you suspect EDF, the appropriate referral is to a qualified
neuropsychologist.
In a school-based psychoeducational
assessment, executive functions are not normally assessed, leaving parents and educators without objective data about an important
aspect of the student's functioning.
If you suspect your child or student has executive dysfunction, ask whether
the school psychologist can use the NEPSY or B.R.I.E.F. assessment procedures. If neither is available or if the school psychologist
is not competent or qualified to administer them, consider arranging for a neuropsychological evaluation privately or asking
the school district to arrange for one at public expense.
IF IT IS EDF, WOULD MEDICATION HELP?
Most of the research relevant to this question looks at the role of stimulant
medications (such as Ritalin) on specific types of tasks or activities. Although a detailed discussion of this research is
beyond the scope of this web site, it is intriguing to note that there is some evidence that stimulant medications may be
of benefit. For example, Kramer, Cepeda, and Cepeda (2001) reported that methylphenidate (Ritalin) improved task-switching
ability in children with ADHD. Since multi-tasking is something that students are frequently asked to do, it suggests that
medication might be indicated in some cases.
It would be misleading, however, to suggest that stimulant medications might
be of benefit in all types of executive functions. For many problems, we will need to make environmental changes and provide
the student with direct instruction of skills while we model the desired behavior.
NOW WHAT?
What happens when we recognize that someone has serious problems with organization
and that the source of the problem isn't laziness or lack of motivation?
In the author's experiences with schools, she has often observed that the
504 Plan or IEP makes all kinds of provisions for the teachers and parents to somehow compensate for the student's problem:
the teacher is to record the assignments or check off that the student has recorded and packed them; the parent is to initial
a notebook showing what came home and what got done, etc. The parents and the teachers, who are already more organized than
the child, just engage in more organizing behavior without ever really teaching the child how to organize himself or constructively
engaging him in solving his problem. Seldom do I see an IEP where there are specific goals and objectives listed that address
teaching the child the organizational skills that he will need to function independently.
Unless you want to be following
that child around when he's 30, you'd better start figuring out a way to teach him how to organize himself and meet his responsibilities.
There are two ways to view this problem. One is to say that the child needs
our support, and that by supporting the child by providing the back-up copies, etc., we are reducing the child's vulnerability
and doing A Good Thing. And maybe, along the way, the child will begin to do what he sees us doing and will develop the organizational
skills. But if the child is feeling vulnerable and our taking care of all the organizational problems reduces that vulnerability,
why will the child risk "blowing that" by attempting to organize himself? Even a child who is motivated to organize himself
is likely to assess the situation and recognize that the adults are going to do a much better and more consistent job than
he could ever do, so why even try?
Now consider another approach -- one in which we work with the child as their
consultant or supporter to help them organize themselves. We let the child recognize and appreciate where their problems are
and ask how we can be of help to them, assuming the best -- that they want to be responsible and organized. Often, the ideas
or strategies that they come up with may be better than anything we could come up with and since they are now vested in the
strategy, they are more likely to comply with it.
So we determine if they're motivated to organize themselves and offer our
support. Within that context, there are a number of tricks or strategies that can be used. Hopefully, they will be used within
in a context in which we are trying to support the child's efforts to organize themselves. We do so recognizing that there
will be many 'failures' along the way, and that if we want the child to succeed, we have to make it emotionally safe for them
to try and even to fail. We need to reduce their vulnerability and we do by reducing our own. As parents, teachers, or spouses,
we are not responsible for doing our child's work. We are not responsible for 'nagging' them to do their work. If they tell
us that they would find it helpful to have a reminder at a particular time so that they can start their work, we can provide
that reminder. But we probably should stop at the point when our efforts are not experienced as support and become 'nagging'
or confrontation -- particularly if they have mood lability or are otherwise prone to explosive outbursts.
One final note: students and adults both may benefit from computers or electronic
organizers that incorporate calendars with repeating functions. How much better to teach someone that although he may not
remember things easily, he can teach himself to rely on a computer as a memory prosthesis. We can teach most children and
adults to program their own reminders on computers. Alarms can be set (by them) so that they stay in control of taking responsibility.
Such devices become lifelong tools that enable independent functioning and can rightfully be considered assistive technology
and/or a reasonable accommodation.
EXECUTIVE FUNCTION IN ADULTS
Executive dysfunction is not the kind of problem that you 'outgrow,' although
many children and adolescents do learn strategies to manage themselves. But how many "terminally disorganized" adults never
realized that they had a neurocognitive problem -- or knew what to do about it?
The same kinds of strategies that work for students may also be of benefit
to adults who suffer from executive dysfunction. Learning to use a day planner or PalmPilot, learning to allow more time for
activities or to get to a business appointment, learning how to successfully cope with the multi-tasking demands of the employment
setting are all essential skills, and adults with EDF (or their spouses) may find it helpful to look at the tips or strategies
articles on this site and adapt the strategies to their needs.
Adults who are really struggling may wish to hire a "coach" who can help with
learning employment-related skills or routines; other coaches serve to help individuals organize their personal lives.
And if you're really disheartened -- or if you're a spouse who is frustrated
beyond belief by all the time spent looking for misplaced car keys, the wallet, important documents, etc., here's a true story
that may inspire you:
A few years ago, my husband decided that he was going to learn to organize
himself (yes, I am married to one of those "terminally disorganized" ADDults). Off he went to the library to get a book to
teach him how to organize himself. It was one of those books with an overly optimistic title like "Learn to Organize Yourself
in Seven Days." He came home with the book, read the preface, and then happily explained to me how he was to read one chapter
a day, and at the end of the week, he'd be organized.
Six weeks later, we received an overdue notice from the library. My husband
was so disorganized that not only had he not gotten back to read the first chapter of the book, but he had totally misplaced
it and forgotten about it.
It is now a few years later. My husband got himself to always carry a notebook
with him and to write everything down. At the beginning, he'd make his daily to-do list, and check things off. At the end
of the day, he'd rip out the page. Unfortunately, he'd rip out the page even if some things hadn't gotten done, and after
a few more rough months, he learned to leave the pages in there and make sure that everything on a page was checked off or
followed up on. Oh, there are still bills that don't get paid promptly, and it was over 6 months before he got in the habit
of leaving his keys near the door so that he could find them more easily, but if he can make progress, so can you!
COMMENT
If you're feeling a bit "stunned" by what you're reading, that's fine. I get
a slew of emails from parents and teachers who just went "wow" when they read this section of the site and realized that I
was describing their child or student.
If you're a parent and you're feeling guilty that you didn't know, then think
about this:
If the professionals you talked to or took your child to didn't think to consider
assessment, then why should you have known?
Source: http://www.tourettesyndrome.net/
**********************************************************
FETAL ALCOHOL SYNDROME
Babies diagnosed with Fetal Alcohol Syndrome (FAS) may have some
but not necessarily all of the following physiological characteristics:
- Small birth weight
- Small head circumference
- Small, widely spaced eyes
- Flat midface
- Short, upturned nose
- Smooth, wide philtrum
- Thin upper lip
Note: Facial characteristics may not be as apparent immediately
after birth or during adolescence or adulthood as they are between the ages of two and ten. Facial characteristics may not
be present at all if the mother did not drink alcohol during the brief period that the midface was forming - around the 20th
day of pregnancy.
If the facial characteristics are not visible, the child may not
get a diagnosis of FAS, but may have the same neurological symptoms and behavior challenges as children with full FAS. Only
about 20% of affected children receive a diagnosis of FAS. The other 80% have partial FAS or Fetal Alcohol Effects (FAE),
also called Alcohol Related Neurological Disorder (ARND). Together FAS and FAE make up the broad category called Fetal Alcohol
Spectrum Disorders (FASD).
Most infants with FASD are irritable, have trouble eating and sleeping,
are sensitive to sensory stimulation, and have a strong startle reflex. They may hyperextend their heads or limbs with hypertonia
(too much muscle tone) or hypotonia (too little muscle tone) or both. Some infants may have heart defects or suffer anomalies
of the ears, eyes, liver, or joints.
Most children with FASD have developmental delays and some have
lower than normal intelligence. Only 15% of children with FASD have an IQ under 70. Most children with FASD have IQ in the
normal or above normal range.
The most serious characteristics of FASD are the invisible symptoms
of neurological damage from prenatal exposure to alcohol. These symptoms persist into adulthood and include the following:
- Attention deficits
- Memory deficits
- Hyperactivity
- Difficulty with abstract concepts
- Inability to manage money
- Poor problem solving skills
- Difficulty learning from consequences
- Immature social behavior
- Inappropriately friendly to strangers
- Lack of control over emotions
- Poor impulse control
- Poor judgment
These symptoms are not just "behavior problems" but are "soft signs"
- symptoms of permanent, unchanging damage to the brain (static encephalopathy) and are not within the child's control. Although
psychological factors such as abuse and neglect can add to the intensity of the problems, the behaviors should be viewed first
and foremost as a result of brain damage from alcohol.
Adults with FASD have difficulty maintaining successful independence.
They have trouble staying in school, keeping jobs, or sustaining healthy relationships. They require long-term support and
some degree of supervision in order to succeed.
Without appropriate support services, these individuals have a
high risk of developing secondary disabilities such as mental health issues, getting into trouble with the law, abusing alcohol
and other drugs, and unwanted pregnancies.
Children and adults with FASD are also quite vulnerable to physical,
sexual, and emotional abuse.
Fetal Alcohol Effects (FAE) and Fetal Alcohol Syndrome (FAS) are
caused by alcohol consumption during pregnancy.
Fetal Alcohol Effects and Fetal Alcohol Syndrome are ENTIRELY preventable
simply by women refraining from drinking during their pregnancy.
FAS and FAE are permanent and irreversible - YES! The effects last
a lifetime! No cure - no treatment just a lifetime of pain for both the child and the family and results in significant cost
to your community.
Fetal Alcohol Effects (FAE) and Fetal Alcohol Syndrome (FAS) impair
a child's lifetime ability to function mentally, physically and socially and to be the best that they can be.
Effects can range from mild to moderate in the case of Fetal Alcohol
Effects (FAE), to more involved and severe in the case of Fetal Alcohol Syndrome (FAS).
Individuals with FAE or FAS are effected by impairments in reasoning,
judgment. Self control can be severely impaired and may result in crime, delinquency and other anti-social behavior.
Fetal Alcohol Effects (FAE) and Fetal Alcohol Syndrome (FAS)
effects children of all socio-economic levels - this is NOT just a person's problem and it is NOT restricted to any particular
culture. The incidence is high and effects you and your community!
The following Fetal Alcohol Spectrum Disorders (FASD) are caused
by drinking alcohol during pregnancy:
FAS: Fetal Alcohol Syndrome
Symptoms include small head/body,
facial characteristics, brain damage
FAE: Fetal Alcohol Effects
Symptoms usually not visible, such
as behavior disorders, attention deficits
ARBD: Alcohol Related Birth Defects
Anomalies such as heart
defects, sight/hearing problems, joint anomalies, etc.
ARND: Alcohol Related Neurodevelopmental Disorders
Disorders
such as attention deficits, behavior disorders, obsessive/compulsive disorder, etc.
FASD: Fetal Alcohol Spectrum Disorders
All of the disorders
named above are contained in the spectrum. Full FAS comprises only about 10% of the spectrum. The other 90% may have fewer
physical symptoms but are at greater risk for developing serious secondary conditions later. (Streissguth, 1997)
FAS is the leading cause of mental retardation in western civilization.
But... Most persons with FAS have an IQ in the normal range. (Streissguth, 1997)
The incidence of Fetal Alcohol Syndrome in America is 1.9 cases
per 1,000 births (1/500)
Incidence of babies with disabilities resulting from prenatal alcohol
exposure: 1/100
FAS/FAE is a major health issue in western civilization today.
More American babies are born with FAS than with Down Syndrome, MD, and HIV combined.
Educational Needs
Children with FAS/FAE have special educational needs. Even
very young infants can benefit from early stimulation programs to help with intellectual and motor development. These programs
are now widely available, with some even offered at home by traveling therapists and educators.
Preschoolers often have a range of developmental and language delays
as well as signs of hyperactivity, irritability, and distractibility. Preschool programs which follow individualized educational
plans are helpful for the child as well as for the parents who gain valuable respite time to regroup from the intense demands
of these children.
Appropriate placement in special education classes beginning in
elementary school is often necessary for children with FAS/FAE. A small classroom setting with clear guidelines and a great
deal of individual attention can maximize the intellectual capabilities of these learners. Although intensive remedial education
has not been show to increase the intellectual capabilities of children with FAS/FAE, it may prevent further deterioration.
Many patients with fetal alcohol syndrome reach an academic plateau
in high school. Many will be unable to hold a regular job. Nonetheless, all of these students need to know basic life skills,
including money management, safety skills, interpersonal relating, and so forth. These tasks will enrich their adult lives
and allow them a degree of independence. The addition of such a life-skills component to the special education curricula for
FAS students can be invaluable. Wherever possible and appropriate, vocational training should be part of the high school experience.
Unfortunately, most vocational and technical institutes beyond high school will offer a curricula too academically rigorous
for developmentally delayed individuals.
Family Needs
Patients with FAS/FAE are at a higher than average risk for physical
and sexual abuse and neglect when raised in their families of origin. These children need a supportive, loving home environment
with clear guidelines and clear lines of communication in order to develop to their fullest potential. When foster (or adoptive)
placement is necessary, the greatest progress is made by calm, low key individuals, who are secure and comfortable with themselves
and live stable and predictable lives. Families who treat the FAS child as normally as possible, combining loving acceptance
with firm limit setting seem more satisfied than do those who have high performance expectations.
Due to their poor social judgment, underdeveloped independent living
skills and impaired intellectual functioning, most FAS children will require a structured, sheltered living situation throughout
their lives. The most severely affected may require a completely supervised and sheltered environment. For more functional
patients, a group home or halfway house for developmentally disabled adults may be appropriate if continued residents with
a family is not possible or desirable.
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FRAGILE X
Fragile X Syndrome is the most common inherited
cause of mental impairment, affecting approximately 1 in 2,000 males and 1 in 4,000 females worldwide. It is estimated that
1 in 260 females are carriers of the premutation. It is second only to Down Syndrome as a congenital cause of mental retardation.
Both males and females may be affected by a wide variety of symptoms. Fragile X Syndrome appears in children of all ethnic,
racial, and socioeconomic backgrounds.
Fragile X Syndrome is caused by a mutation on the "X" chromosome. Females have
two "X" chromosomes, and Males have one "X" and one "Y" chromosome. A section near the end of the "X" chromosome normally
contains between six and fifty repetitions of the genetic code CGG. For reasons which remain unclear, the regulation of the
code breaks down in some people, causing the number of CGG repeats to increase. An expansion of the sequence from fifty to
two-hundred repeats is called a premutation and generally causes few or no symptoms of Fragile X Syndrome. An increase of
over two-hundred CGG repeats (sometimes into the thousands) is called a full mutation and results in the Fragile X Syndrome.
The function of the gene is to produce a protein (FMRP). However, when the gene fully mutates, no protein is produced. The
protein is important in brain development and all brain functioning.
Who should be tested? All people with mental
retardation or autism of unknown origin. People with significant hyperactivity, learning disabilities, and/or mild cognitive
deficits. People with any of the physical or behavioral features of Fragile X Syndrome, regardless of gender or of family
history. Any individual that has a family member with a diagnosis of Fragile X Syndrome or a family history of mental impairment.
Physical features may be quite subtle, and because of this, many children and adults with Fragile X Syndrome appear
normal looking. Physical features associated with Fragile X Syndrome include a long, narrow face, prominent ears, high palate,
and, in postpubescent males, large testicles. Abnormalities of connective tissue and muscle tone may result in hyper-extensible
joints (double-jointed); flat feet, soft velvety skin, and mitral valve prolapse (heart murmur). Low muscle tone may cause
spinal curvature, strabismus (crossed eyes), and slack facial features, particularly in young children.
Behaviors
range from socially engaging and friendly to extreme shyness, gaze aversion, and anxiety. Individuals with Fragile X Syndrome
can be easily overwhelmed by sensory stimuli: crowds, noises, textures, etc. In addition, they may display an aversion to
being touched or held. Hyperactivity and impulsivity are common in boys with Fragile X. Shy and timid behavior, with a tendency
toward social withdrawal, is common in girls with Fragile X. Both boys and girls experience attention difficulties. Poor eye
contact, hand-flapping, hand biting, and fascination with spinning objects are common autistic-like behaviors. Children with
Fragile X may display some or all these
characteristics.
Most young boys will exhibit speech and language delays.
As language develops, it tends to be dysfunctional; rapid, uneven speech, and repetition of words and phrases (perseveration)
are commonly heard. Speech and language problems tend to be less severe in affected little girls.
Individuals with
Fragile X display a wide range of capabilities. About 80% of boys with Fragile X will have some degree of mental impairment,
ranging from low-normal intelligence to severe retardation. The majority are mildly to moderately retarded. Approximately
30% of girls with Fragile X are mentally impaired. The others have normal intelligence but may show subtle learning disabilities,
particularly in math.
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HYPERGRAPHIA is the driving compulsion to write; the overwhelming
urge to write. Hypergraphia may compel someone to keep a voluminous journal, to jot off frequent letters to the editor, to
write on toilet paper if nothing else is available, and perhaps even to compile a dictionary. Hypergraphia is the opposite
of writer's block.
Temporal lobe epilepsy is associated with hypergraphia. This association
has been known at least as early as 1974. A number of prolific writers may have had temporal lobe epilepsy, including Byron,
Dante, Dostoevsky, Molière, Petrarch, Poe, and Tennyson. Hypergraphia has also been called the midnight disease.
************************************************************
HYPERLEXIA is a Syndrome observed in children who have:
~A
precocious ability to read words, far above what would be expected at their chronological age or an intense fascination with
letters or numbers.
~Significant difficulty in understanding verbal language
~Abnormal social skills, difficulty in
socializing and interacting appropriately with people.
They may also:
~Learn expressive language in a peculiar
way, echo or memorize the sentence structure without understanding the meaning (echolalia), reverse pronouns.
~An intense
need to keep routines, difficulty with transitions, ritualistic behavior.
~Normal development until 18-24 months, then
regression.
~Difficulty answering "what," "where," "who," and "why" questions.
~Think in concrete and literal terms,
difficulty with abstract concepts.
~Listen selectively; appear to be deaf.
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http://www.ninds.nih.gov/health_and_medical/disorders/hypertonia.htmNational Institute of Neurological Disorders and Stroke Accessible
version
What is Hypertonia?
Hypertonia is a condition marked by an abnormal increase in muscle tension and a reduced
ability of a muscle to stretch. It is caused by injury to motor pathways in the central nervous system, which carry information
from the central nervous system to the muscles and control posture, muscle tone,
and reflexes. When the injury occurs in
children under the age of 2, the term cerebral palsy is often used. Hypertonia can be so severe that joint movement is not
possible.
Untreated hypertonia can lead to loss of function and deformity.
Hypertonia may result from injury, disease, or conditions such as spasticity, dystonia (prolonged muscle contractions that
cause twisting and repetitive movements or abnormal posture), rigidity, or a combination of factors. Spastic hypertonia involves
uncontrollable muscle spasms, stiffening or straightening out of muscles, shock-like contractions of all or part of a group
of muscles, and abnormal muscle tone. It is seen in disorders such as cerebral palsy, stroke, and spinal cord injury.
Dystonic hypertonia refers to muscle resistance to passive stretching
(in which a therapist gently stretches the inactive contracted muscle to a comfortable length at very low speeds of movement)
and a tendency of a limb to return to a fixed involuntary (and sometimes abnormal) posture following
movement. It is seen
in the different forms of dystonia and sometimes in parkinsonism. Rigidity is an involuntary stiffening or straightening out
of muscles, accompanied by abnormally increased muscle tone and the reduced ability of a muscle to stretch. This type of hypertonia
is most common in
Parkinsonism.
Is there any treatment?
Drugs such as baclofen, diazepam, and
dantrolene may be prescribed to reduce spasticity. All of these drugs can be taken by mouth, but baclofen may also be injected
directly into the cerebrospinal fluid. Injections of botulinum toxin are a recent treatment for chronic hypertonia in cerebral
palsy, spasticity, and other disorders. Rehabilitative treatment may involve range
of motion exercises, active stretching
exercises, and occupational therapy.
In severe cases, clinicians may use selective dorsal rhizotomy,
a surgical procedure in which the nerves that cause spasticity are cut. Dystonic hypertonia and rigidity can be treated with
therapies directed to the underlying disorders.
What is the prognosis?
Hypertonia is sometimes painful and can lead
to functional limitation, disability, or, in severe cases, reduced quality of life.
What research is being done?
NINDS
supports research on brain and spinal cord disorders that can cause hypertonia. The goals of this research are to learn more
about how the nervous system adapts after injury or disease and to find ways to prevent and treat these disorders.
Organizations
Dystonia
Medical Research Foundation
1 East Wacker Drive
Suite 2430
Chicago, IL 60601-1905
dystonia@dystonia-foundation.org
http://www.dystonia-foundation.orgTel: 312-755-0198
Fax: 312-803-0138
Christopher Reeve
Paralysis Foundation/Paralysis Resource Center
500 Morris Avenue
Springfield, NJ 07081
http://www.christopherreeve.orgTel: 973-379-2690 ~ 800-225-0292
Fax: 973-912-9433
United
Cerebral Palsy Research & Educational Foundation
1600 L Street, NW
Suite 700
Washington, DC 20036
webmaster@ucpa.org
http://www.ucpa.org/ucp_general.cfm/1/4Tel: 202-776-0406 ~ 800-USA-5UCP (872-5827)
Fax: 202-776-0414
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NINDS
health-related material is provided for information purposes only and does not necessarily represent endorsement by or an
official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the
treatment or care of an individual patient should be obtained through consultation with a physician who has examined that
patient or is familiar with that patient's medical history.
All NINDS-prepared information is in the public domain
and may be freely copied. Credit to the NINDS or the NIH is appreciated.
************************************************************
NON-VERBAL LEARNING DISORDER
Nonverbal Learning Disorder
(NLD),is a developmental disability which all too often goes undiagnosed. Individuals with this potentially debilitating disorder
generally suffer in silence.
They are often bright, sometimes incredibly so. As young children they may actually be
targeted as gifted, due to their mature vocabulary, rote memory skills, and apparent reading ability.
However, parents
likely realize early on that something is amiss. As preschoolers, these youngsters probably have difficulty interacting with
other children, with acquiring self-help skills, are not physically adept, are not adaptable, and present with a host of other
troublesome problems that are of concern, but not alarming.
In all likelihood, the children bump along (figuratively
and literally) through their early elementary years, handling the academic demands fairly well, except when their fine motor
difficulties get in the way, or they fail to attend to a math symbol calling for addition or subtraction, or some other subtle
symptom of their disorder derails them.
As these children enter the upper elementary grades or begin middle school,
they are left to handle more tasks on their own. Things rapidly begin to deteriorate. They get lost, forget to do homework,
seem unprepared for class, have difficulty following directions, struggle with math, can't read their social studies textbook,
can't write an essay, continually misunderstand both their teachers and their peers, and are often anxious in public and angry
at home. They are accused of being lazy, rude, uncooperative, and worse. Nothing could be farther from the truth. They are
hardworking, persistent, goal-oriented, and incredibly honest. They have NLD.
If the child has not benefited from
diagnosis and an intervention plan at this point, the cognitive, social, and emotional demands of high school years and beyond
can be overwhelming. But on the positive side, there have been great strides in understanding and treating this disorder in
recent years.
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Noonan Syndrome
Noonan Syndrome is a condition which affects both children and
adults. It is often associated with congenital heart disease and short stature.
- It is believed that 1 in 1,000 to 1 in 2,500 children worldwide
are born with this condition.
- Each day a child is born with the condition.
- It's possible that people carry the gene yet are undiagnosed.
- Once affected, there is a 50/50 chance of passing the gene on to
one or more of their children.
- It can also occur sporadically, presumably due to a new mutation.
Often called a "hidden" condition, the children affected may have
no obvious casual signs to the onlooker, but the problems may be many and complex with no clinical test available. This is
a genetic condition that can affect the heart, growth, blood clotting, mental and physical development. Affected individuals
may have behavior problems, learning difficulties and many other anomalies. Noonan Syndrome is one of the most common of those
conditions associated with congenital heart abnormality.
***********************************************************
OBSESSIVE-COMPULSIVE DISORDER
Obsessive-Compulsive Disorder
(OCD) is an anxiety disorder characterized by involuntary thoughts, ideas, urges, impulses, or worries that run through one's
mind obsessions) and purposeless repetitive behaviors compulsions).
Approximately one million children and adolescents
in the United States suffer from OCD. This can mean three to five youngsters with OCD per average-sized elementary school
and about 20 teenagers in a large high school.
OCD is as or more prevalent than many other, better-known childhood
ailments. Attention-deficit/hyperactivity disorder (ADHD), the most common psychiatric illness among children, affects just
over a million children in the United States. About l00,000 youngsters l9 years-old or younger are diagnosed with diabetes.
Some of the most common obsessions are fear of contamination or a serious illness, fixation on lucky or unlucky numbers,
fear of danger to self and others, need for symmetry or exactness, and excessive doubt.
Some of the most common compulsions
are repetitive rituals such as cleaning or washing, touching, counting, repeating, arranging or organizing, checking or questioning,
and hoarding.
OCD affects children and adolescents during a very important period of social development. Schoolwork,home
life, and friendships are often affected. Some children with OCD are too young to realize that their thoughts and actions
are unusual. They may not understand or be unable to explain why they must go through their rituals. But older children may
feel embarrassed. They don't want to be 'different' from their peers and may worry that they are 'going crazy'.
Fearing
ridicule, children may hide their rituals when in front of friends at school or at home and become mentally exhausted from
the strain. Some families resort to counting the number of bars of soap used daily as the only way to track a child's washing
rituals.
Other children find their rituals so time-consuming that they are too tired to play with friends or concentrate
in school.
Although children and adults experience many of the same obsessions and compulsions, children often express
their disorder in special ways. Unlike adults, children may not recognize that their obsessions are senseless and that their
compulsions are excessive. Very young children try to explain away their habits as being 'silly' or simply necessary.
Children
and adolescents with OCD more often involve family members in their rituals. For instance, they may insist that their laundry
be washed multiple times, demand that parents check their homework repeatedly, or become outraged if household items are in
disarray. Additionally, OCD in children often exists concurrently with motor tics and/or Tourette's syndrome.
Parents
often feel bewildered by their child's odd behaviors and may feel they are "just a phase." There may be periods of frustration
and anger when children repeatedly demand answers to questions or want help in completing their rituals. Tensions may rise
especially within the normal dynamics of parent-teen relationships. Parents of children with OCD may feel guilty if they find
that the disorder has run in their families. However, OCD is not caused by bad parenting.
Other children within the
family may feel neglected while parents focus on helping the child with OCD. Siblings may also be subject to teasing by friends
who do not understand OCD.
At this time, researchers cannot predict who will develop OCD, but it has been shown to
follow patterns in families. There are indications that the biological imbalance of the brain chemical serotonin can be passed
on to succeeding generations. So, the tendency to develop OCD may he inherited, while the actual disorder may not.
The
onset of OCD symptoms may occur as early as age three or four, but very young children and parents may not recognize the symptoms.
A pediatrician can refer parents to a child psychiatrist who will review the child's behavior with the child, parents,
siblings, and possibly the teacher, and use a specially designed interview to diagnose OCD.
At school, children with
severe OCD symptoms may repeatedly check, erase, and redo their assignments, which can result in late and incomplete schoolwork.
Classroom concentration and participation may be limited by fears and rituals.
Teachers can be very helpful in supporting
a child's treatment of OCD once parents inform them about the disorder. Parents may share information about their child's
OCD medication with teachers and provide occasional progress reports. Even if a child's OCD is not active at school, teachers
should be informed that treatment for OCD can improve the child's ability to learn.
As in adults, standard treatment
includes medication therapy, behavior therapy, or a combination of both. Drugs recommended for OCD are those that act upon
the imbalance of serotonin. A physician should be contacted to recommend which particular medication is best suited for each
specific case.
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OPPOSITIONAL DEFIANT DISORDER
Oppositional Defiant Disorder
(ODD)is a psychiatric disorder that is characterized by two different sets of problems. These are aggressiveness and a tendency
to purposefully bother and irritate others. It is often the reason that people seek treatment. There is a pattern of negativistic,
hostile, and defiant behavior lasting at least 6 months, during which four (or more) of the following are present:
~often
loses temper
~often argues with adults
~often actively defies or refuses to comply with adults' requests or rules
~often deliberately annoys people
~often blames others for his or her mistakes or misbehavior
~is often touchy
or easily annoyed by others
~is often angry and resentful
~is often spiteful or vindictive
Consider a criterion
met only if the behavior occurs more frequently than is typically observed in individuals of comparable age and developmental
level.
The disturbance in behavior causes clinically significant impairment in social, academic, or occupational functioning.
The behaviors do not occur exclusively during the course of a Psychotic or Mood Disorder.
Associated features are:
~Learning Problem
~Depressed Mood
~Hyperactivity
~Addiction
~Dramatic/Erratic/Antisocial Personality
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PALILALIA
Palilalia is the repeating
one's own words. As children get older, some may develop what is called "palilalia."
This usually occurs in higher-functioning autistic children, such as children with Asperger's disorder. This is where the
child says a sentence and then whispers the same sentence under their breath.
For children who do develop better language, it's very common to
only speak rote language. For example, they may watch the movie Toy Story and favorite parts of that movie will be well-memorized,
then repeated over and over and over.
Thanks to my sister Margo for finding this. :)
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RETT SYNDROME
Rett Syndrome (RS) is a genetic disorder
that is characterized by an initial period of normal development, followed by a loss of communication skills and purposeful
hand movements. It is a disorder that is seen almost exclusively in females and occurs in a variety of racial and ethnic groups
worldwide. RS has just recently been traced to a defective gene on the X chromosome called MeCP2. It is estimated that the
incidence of RS is between 1 in every 10,000 to 15,000 live female births.
In 1965, Austrian pediatrician, Andreas
Rett, observed two young girls sitting on their mothers' laps in his waiting room. They were profoundly disabled and were
wringing their hands together incessantly. After searching his files, he found six other girls with the same clinical features
and wrote the first description of, what is now known as, Rett syndrome. RS later received worldwide recognition following
a paper written by Bengt Hagberg and his colleagues in 1983.
Rett syndrome is often mistaken for autism, cerebral
palsy, and mental retardation. However, no other condition has a period of rapid deterioration followed by stabilization and
sometimes even improvements in autistic features, eye contact, and stereotypical hand movements. Since there is no form of
laboratory testing for RS, diagnostic criteria and exclusionary criteria have been formed for the recognition of the syndrome.
The following characteristics must be found in order to receive a diagnosis of RS:
~Normal development until approximately
6-18 months of age
~Normal head circumference at birth, followed by a slowed growth rate anywhere from 3 months to 4 years
of age
~Severely impaired expressive language and loss of purposeful hand skills
~Repetitive hand movements such as:
hand washing, hand wringing, hand clapping, and hand mouthing
~Shakiness of the torso, which may also involve the limbs
(particularly when the child is upset or agitated)
~If able to walk, unsteady, wide-based, stiff-legged gait/toe walking
Other features that may be seen, but are not required for a diagnosis of RS, include:
~Breathing dysfunctions
including apnea and hyperventilation
~EEG abnormalities
~Seizures
~Muscle rigidity, spasticity, or joint contractures
~Scoliosis (curvature of the spine)
~Teeth-grinding
~Small feet (in relation to stature)
~Growth retardation
~Decreased body fat and muscle mass
~Abnormal sleep patterns and irritability or agitation
~Chewing/swallowing
difficulties
~Poor circulation of lower extremities
~Decreased mobility with age
~Constipation
Exclusionary
criteria include:
~Organomegaly or other signs of storage disease
~Retinopathy or optic atrophy
~Microcephaly
at birth
~Existence of identifiable metabolic or other heredodegenerative disorder
~Acquired neurological disorder
resulting from severe infections or head trauma
~Evidence of intrauterine growth retardation
~Evidence of perinatally
acquired brain damage
The diagnostic criteria described above is still used to give a diagnosis of Rett syndrome,
however, DNA sequencing is now available to detect the MeCP2 mutation. The MeCP2 mutation alone does not indicate that a child
has Rett syndrome, as the mutation has been found in those without the classic Rett symptoms as well. To date, the mutation
has been indentified in 50% of the RS cases. Research continues to search the remainder of the gene in children with RS to
find all the mutations.
Children with Rett syndrome typically develop normally until approximately 6 months to 1 ½
years of age. At that point, which is identified as stage one, the symptoms of RS are still somewhat vague, however, the infant
shows less eye contact, less interest in toys, is not cuddly, and is very calm. Gross motor skills may be delayed and hand
wringing and deceleration of head growth may be present.
In the second stage, age 1 to 4 years, certain hand skills
and language are lost. The loss can be so acute, that some parents can actually identify the date that their child was no
longer "normal." The hand movements mentioned earlier begin to emerge as well as other symptoms such as breathing irregularities,
sleep irregularity, loss of social interaction, tremulousness, and slowing of head growth.
In the third stage, age
2 to 10 years, apraxia, motor problems, and seizures are more prominent. However, irritability, attention span, and communication
skills improve.
In the fourth stage, after age 10 years, there is reduced mobility. Some girls stop walking, and scoliosis
is a prominent feature. There is, however, no decline in cognition, communication, or hand skills, and repetitive hand movements
may decrease.
Scoliosis occurs in many girls with RS and may progress rapidly during ages 8-14 years. Some girls will
need bracing and/or surgery. The likelihood of the scoliosis worsening seems to occur in those girls who do not walk and those
who had early low muscle tone.
Most girls with RS have the desire to communicate. Some girls have been able to use
augmentive communication techniques, while other may use picture, letter, or word boards, eye-gaze responses, and switch activated
voice output devices. As the typical RS hand movements begin to develop, the hand-mouth behavior is often seen first. Movements
are most often midline hand wringing or hand washing and only occur when the child is awake. Hands are also sometimes seen
clasped behind the back or held at the sides in a specific pose with random touching, grasping, and releasing. Hand tapping
and hand clapping are other movements also associated with RS.
A large number of girls with RS are reported to have
seizures, however, the number is overestimated because many of the common RS movements are mistaken for seizures. Those who
do have seizures (proven by EEG monitoring), can be effectively treated with anti-convulsion medication.
Most girls
with RS are small for their age. In fact, studies show that many girls meet the criteria for being moderately to severely
malnourished. This may be due to swallowing difficulties, inadequate caloric intake, energy expenditure imbalance, or inadequate
utilization of nutrients. Supplemental feedings (oral feedings with high calorie foods, NG-tube feedings, or G-tube feedings)
have been effective in bringing height and weight gains, which may then result in more alertness and interaction.
There
is no cure for Rett syndrome, but a vigorous therapeutic approach,providing therapies such as physical therapy, occupational
therapy, hydrotherapy, and music therapy, are recommended. In the physical therapy program, the emphasis should be on maintaining
ambulation and balance. Occupational therapy should focus on promoting hand use, including the use of hand splints to reduce
the involuntary hand movements associated with RS. Speech therapy may be useful in promoting communication through the use
of communication devices or picture boards. In addition to the three common therapies, therapeutic horseback riding and hydrotherapy
have been useful in promoting balance and protective responses, and music therapy has been used as an incentive for the child
to perform.
Early exposure to age-appropriate toys and books is very important, even if the child is not showing any
type of response. Always allow enough time for her to respond to the stimulation. A response may not happen for several minutes
and may be in an unconventional manner. Apraxia (the inability to program the body to perform motor movements), a common aspect
of RS, can make it difficult for her to respond to directions; the more she has to think about, the more difficult it will
become. However, providing environments and situations that are strongly motivating will make it easier for her to show what
she understands, resulting in greater success and satisfaction.
It was once believed that Rett syndrome was a degenerative
disorder, however, most experts now agree that it is a developmental disorder. MRI's, PET scans, and neuropathological studies
suggest no degeneration of the central nervous system. Therefore, the majority of women with RS will reach adulthood, surviving
at least until their 40's. It is difficult to measure cognition in an individual with RS due to apraxia and lack of communication
skills. She does remain dependent on others to assist with daily living activities such as eating, dressing, and bathing.
Some women are toilet-trained; however, they still need physical assistance with toileting. Many times, when the individual
with RS reaches age 22 years, therapies may be discontinued and she may lose ambulatory and other motor skills. Since this
may lead to a decline in health, quality-of-life provisions can be made to continue with physical, occupational, and speech
therapy.
Puberty begins at the expected age for most girls, although early puberty has been reported. Girls menstruate
and can become pregnant. As the girl reaches adulthood, health care providers should treat her as an adult rather than a child.
Teenagers with RS can show strong likes and dislikes, and appear to understand in general what is being said around and about
them.
**********************************************************
SEMANTIC/PRAGMATIC DISORDER
Semantic Pragmatic Disorder
is a term which has been used mostly in the UK and by speech and language therapists, for the last 10 - 15 years. The term
was originally used to describe a developmental language disorder, affecting two aspects of communication: "semantics" and
"pragmatics". In recent years, there has been debate about whether or not "semantic pragmatic disorder" is in fact an appropriate
diagnosis, or merely a descriptive term for the nature of communication difficulty found in verbal people with autism.
Semantics has to do with understanding that words have implied/vague as well as literal/inflexible meanings, while pragmatics
refers to an individual's ability to understand how language is used in a social context.
Example of pragmatics: when someone changes the subject,
they are probably signalling that they don't want to talk about what you were talking about any more.
Example of semantics: knowing that "just a minute" doesn't
mean that someone will be ready in 60 seconds.
Research
findings indicate that "semantic pragmatic disorder" does belong within the autistic spectrum and has the same underlying
triad of socio-cognitive deficits as high functioning autism.
Features it includes are:
~delayed language
development
~learning to talk by memorizing phrases, instead of putting words together freely
~repeating phrases out
of context, especially snippets remembered from television programs
~mixing up 'I' and 'you'
~problems with understanding
'how' and 'why' questions
~difficulty following conversations
Children with this disorder have problems understanding
the meaning of what other people say, and they do not understand how to use speech appropriately themselves.
Most
of the children diagnosed as having semantic pragmatic disorder do also have some mild autistic features. For example, they
usually have difficulty understanding social situations and expectations, they like to stick to fairly rigidly to routines,
and they lack imaginative play. For a while some language therapists maintained there was still an important difference between
children with semantic pragmatic disorder and children who were truly autistic. They believed the autistic features seen in
children with semantic pragmatic disorder were only a result of their difficulty with language. However, further research
has shown that there is probably a single underlying cognitive impairment which produces both the autistic features and the
semantic pragmatic disorder. The fact that children with semantic pragmatic disorder have problems understanding the meaning
and significance of events, as well the meaning and significance of speech, seems to bear this out.
Eventually the
idea of an autistic continuum was used to explain the situation. All the children on the continuum have semantic pragmatic
difficulties, but the degree of their other autistic impairments can be severe or moderate or mild. This parallels the autistic
continuum relating Asperger Syndrome, where all the children have a marked social impairment but those with Asperger Syndrome
have only a relatively mild and subtle language impairment.
It seems that children who are diagnosed as having a semantic
pragmatic disorder might more accurately be described as high-functioning autistic. Clinicians tend to give all autistic children
who have good intelligence the label Asperger Syndrome, even if a child actually has very limited speech. But there are important
differences between bright autistic children with semantic pragmatic difficulties and bright autistic children with Asperger
Syndrome. Children with semantic pragmatic difficulties have usually learned to talk late, whereas (according to diagnostic
guidelines) children with Asperger Syndrome were able to talk in sentences by the age of three. Also children with semantic
pragmatic difficulties do better on performance IQ tests than verbal IQ tests, whereas with children with Asperger Syndrome
the results tend to be the other way round. However, if a child with semantic pragmatic difficulties eventually becomes a
fluent talker, the difference between the labels 'high functioning autistic' and 'Asperger Syndrome' becomes fairly academic.
**********************************************************
SENSORY INTEGRATION DISORDER
What is Sensory Integration
Disorder? The senses do not work in isolation. Each works with the others to form a composite picture of who we are physically,
where we are, and what is going on around us. Sensory integration is the critical function of the brain that is responsible
for producing this composite picture. It is the organization of sensory information for on-going use. For most of us, effective
sensory integration occurs automatically, unconsciously, without effort. For some of us, the process is inefficient, demanding
effort and attention with no guarantee of accuracy.
Some signs of Sensory Integrative Dysfunction :
* Delays
in speech, language, or motor skills
* Delays in academic achievement
* Easily distracted
* Overly sensitive to
touch, movement, sights, or sounds
* Underreactive to touch, movement, sights, or sounds
* Social and/or emotional
problems
* Poor self concept
* Physical clumsiness
* Impulsive, lacking in self control
* Difficulty making
transitions from one situation to another
* Inability to unwind or calm self
* Activity level that is unusually high
or unusually low
*********************************************************
Synesthesia
"Sensation produced at a point other than or remote from the
point of stimulation, as of a color from hearing a certain sound" .
Synesthesia is an involuntary joining in which the real information
of one sense is accompanied by a perception in another sense. In addition to being involuntary, this additional perception
is regarded by the synesthete as real, often outside the body, instead of imagined in the mind's eye. It also has some other
interesting features that clearly separate it from artistic fancy or purple prose. Its reality and vividness are what make
synesthesia so interesting in its violation of conventional perception. Synesthesia is also fascinating because logically
it should not be a product of the human brain, where the evolutionary trend has been for increasing separation of function
anatomically.
*********************************************
Timothy Syndrome
From Mary Kugler,Your Guide to Rare / Orphan Diseases.
Identified as a syndrome in 2004In
1989, a child came to the office of Dr. Katherine W. Timothy of the University of Utah. Dr. Timothy noted that the child had
a heart rhythm disturbance and webbed fingers and toes. This child had what came to be known as Timothy syndrome, named in
honor of Dr. Timothy's distinguished career as a scientist investigating the causes of irregular heart rhythms.
In 2004, an international team of researchers pinpointed the genetic
mutation responsible for Timothy syndrome, and formally identified the syndrome in the medical literature. The mutation which
causes the syndrome occurs spontaneously and is not inherited.
It is not known how many children are affected by Timothy syndrome.
The researchers identified 17 children, and believe other children with the syndrome will be diagnosed as the medical community
learns about the disorder.
Symptoms
Children with Timothy syndrome have a problem with the
flow of calcium in the body cells. Calcium is one of the most important molecules in the body, and disturbing its flow can
cause a wide range of symptoms. These may include:
- Potentially fatal heart rhythm disturbances
- Heart defects
- Webbed fingers and toes
- Weakened immune system
- Cognitive difficulties
- Autism
- Low blood sugar (hypoglycemia)
Diagnosis
Any child born with webbed fingers or toes is checked
to see if he or she has a genetic disorder. An electrocardiogram (ECG) will detect any abnormal heart rhythms. An echocardiogram
(ultrasound of the heart) will detect any heart defects. Autism is a complex disorder and may be difficult to detect. The
combination of webbed fingers and toes and abnormal heart rhythm should point toward a diagnosis of Timothy syndrome.
Treatment
The good news is that the abnormal flow of calcium in
the body can be treated with calcium-channel blocking medications such as verapamil (Calan) or nifedipine (Adalat, Procardia).
The researchers are treating the children with Timothy syndrome with this type of medication, hoping that the drugs will reduce
the irregular heart rhythms and improve cognitive function.
Research continues
The team of researchers is continuing their
work, evaluating how calcium-channel blocking medications affect individuals with Timothy syndrome. They will also continue
to look for genes which cause irregular heart rhythms, and how abnormal calcium flow in the body may be related to autism.
Information for this article was taken from:
- Children's
Hospital Boston. Rare childhood genetic syndrome identified. Press release dated 9/30/04.
- Howard Hughes Medical Institute.
Researchers pinpoint cause of a severe cardiac arrhythmia. Press release dated 10/1/04.
**********************************************
WILLIAMS SYNDROME
Williams Syndrome is a rare genetic condition (estimated to occur
in 1/20,000 births) which causes medical and developmental problems. It was first recognized as a distinct entity in 1961.
It is present at birth, and affects males and females equally. It can occur in all ethnic groups and has been identified in
countries throughout the world.
Most young children with Williams Syndrome are described as having
similar facial features. These features which tend to be recognized by only a trained geneticist or birth defects specialist,
include a small upturned nose, long philtrum (upper lip length), wide mouth, full lips, small chin,and puffiness around the
eyes. Blue and green-eyed children with Williams syndrome can have a prominent 'starburst' or white lacy pattern on their
iris. Facial features become more apparent with age.
The majority of individuals with Williams Syndrome have some type
of heart or blood vessel problem. Typically, there is narrowing in the aorta (producing supravalvular aortic stenos is SVAS),
or narrowing in the pulmonary arteries. There is a broad range in the degree of narrowing, ranging from trivial to severe
(requiring surgical correction of the defect). Since there is an increased risk for development of blood vessel narrowing
or high blood pressure over time, periodic monitoring of cardiac status is necessary.
Some young children with Williams Syndrome have elevations in their
blood calcium level. The true frequency and cause of this problem is unknown. When hypercalcemia is present, it can cause
extreme irritability or "colic-like" symptoms.
Occasionally, dietary or medical treatment is needed. In most cases,
the problem resolves on its own during childhood, but lifelong abnormality in calcium or Vitamin D metabolism may exist and
should be monitored.
Most children with Williams Syndrome have a slightly lower birth-weight
than their brothers or sisters. Slow weight gain, especially during the first several years of life, is also a common problem
and many children are diagnosed as "failure to thrive". Adult stature is slightly smaller than average.
Many infants and young children have feeding problems. These problems
have been linked to low muscle tone, severe gag reflex, poor suck/swallow, tactile defensiveness etc. Feeding difficulties
tend to resolve as the children get older.
Many infants with Williams syndrome have an extended period of colic
or irritability. This typically lasts from 4 to 10 months of age, then resolves. It is sometimes attributed to hypercalcemia.
Abnormal sleep patterns with delayed acquisition of sleeping through the night may be associated with the colic.
Slightly small, widely spaced teeth are common in children with Williams
syndrome. They also may have a variety of abnormalities of occlusion (bite),tooth shape or appearance. Most of these dental
changes are readily amenable to orthodontic correction.
and/or function. Inguinal (groin) and umbilical hernias are more
common in Williams Syndrome than in the general population.
Children with Williams Syndrome often have more sensitive hearing
than other children. Certain frequencies or noise levels can be painful an/or startling to the individual. This condition
often improves with age.
Young children with Williams Syndrome often have low muscle tone
and joint laxity. As the children get older, joint stiffness (contractures) may develop. Physical therapy is very helpful
in improving muscle tone, strength and joint range of motion.
Individuals with Williams Syndrome have a very endearing personality.
They have a unique strength in their expressive language skills, and are extremely polite. They are typically unafraid of
strangers and show a greater interest in contact with adults than with their peers.
Most people with Williams Syndrome have some degree of intellectual
handicap. Young children with Williams Syndrome often experience developmental delays; milestones such as walking, talking
and toilet training are often achieved somewhat later than is considered normal. Distractibility is a common problem in mid-childhood,
which appears to get better as the children get older. Older children and adults with Williams Syndrome often demonstrate
intellectual "strengths and weaknesses." There are some intellectual areas (such as speech, long term memory, and social skills)
in which performance is quite strong, while other intellectual areas (such as fine motor and spatial relations) are significantly
deficient.
There is a slightly increased frequency of problems with kidney structure.
Williams Syndrome is not caused by anything the parents did or did not do either before or during pregnancy. We know that
most individuals with Williams Syndrome are missing genetic material on chromosome #7 including the gene that makes the protein
elastin (a protein which provides strength and elasticity to vessel walls.) It is likely that the elastin gene deletion accounts
for many of the physical features of Williams syndrome. Some medical and developmental problems are probably caused by deletions
of additional genetic material near the elastin gene on chromosome #7. The extent of these deletions may vary among individuals.
In most families the child with Williams Syndrome is the only one to have the condition in his or her entire extended family.
However, the individual with Williams Syndrome has a 50% chance of passing the disorder on to each of his or her children.
Many individuals with Williams Syndrome remain undiagnosed or are
diagnosed at a relatively late age. This is of concern since individuals with Williams Syndrome can have significant and possibly
progressive medical problems. When the characteristics of Williams Syndrome are recognized, referral to a clinical geneticist
for further diagnostic evaluation is appropriate. The clinical diagnosis can be confirmed by a blood test. The technique known
as fluorescent in situ hybridization (FISH), a diagnostic test of the DNA detects the elastin deletion on chromosome #7 in
more than 98% of individuals with Williams Syndrome.
Williams Syndrome can affect many different body organs. However,
it is important to remember that no two individuals with Williams Syndrome have exactly the same problems. Since some of the
medical problems can develop over time, it is important that individuals with Williams Syndrome receive ongoing medical monitoring
and supervision. Despite the possibility of medical problems, most children and adults with Williams Syndrome are healthy
and lead active, full lives.
**********************************************************
Treatment of Comorbid
Disorders in Autism: Which Regimens Are Effective and for Whom?
Jessica A. Hellings, MD
Department of Psychiatry,
Univ. of Kansas Medical Center
Kansas City, KS
------------------------------------------------------------
Abstract
In the past 10 years, many new medications with the potential for greater safety and fewer side effects have become
available to treat mental illness. Yet, clinicians treating persons with autism continue to prescribe older neuroleptic agents
targeting generic behavior problems -- despite the absence of psychosis and in the face of the serious accompanying risks
of tardive dyskinesia and neuroleptic malignant syndrome. This article presents a model using basic medical and DSM IV-based
comorbidity groups of seizure-related behavioral symptoms; hyperactive-inattentive cluster symptoms; tics, Tourette syndrome,
and movement disorder symptoms; compulsive-sameness oriented-explosive symptoms; mood disorder symptoms; and other miscellaneous
behavioral conditions to guide clinicians in selecting an effective treatment approach. [Medscape Mental Health 5(1), 2000.
© 2000 Medscape, Inc.]
------------------------------------------------------------
Introduction
Autistic
disorder is one of a group of pervasive developmental disorders (PDDs) within a DSM-IV category that also includes Rett syndrome
and childhood disintegrative disorder; Asperger syndrome is also sometimes included. Ideally, all individuals with PDDs should
receive regular clinical psychiatric and neurologic assessments at a specialty center throughout their life span for identification
of treatable conditions that may compound their impairment. Should seizures be suspected, a further clinical workup including
an electroencephalogram can be pursued. Assessments should be obtained annually or more frequently if behavior problems are
deemed to be significantly interfering with the child's progress.
These evaluations are generally available at centers
specializing in the assessment and treatment of these disorders, such as university hospitals or university-affiliated programs.
Treatable conditions associated with autism and other PDDs include seizure disorder, attention deficit hyperactivity disorder
(ADHD), Tourette syndrome, obsessive-compulsive disorder, and bipolar mood disorder. In addition, autistic persons with severely
disruptive behavioral disturbances, such as aggressive, destructive, or self-injurious behavior, are more likely to seek and
receive treatment than individuals with comorbid disorders that cause withdrawn behavior, such as major depression. A great
deal more research is needed before discussion focuses primarily on comorbid conditions.
Increasingly, diagnoses and
treatment of the aforementioned types of comorbidity are based on DSM-IV criteria.[1,2] This specific clinical approach appears
to produce more predictable and successful treatment responses in comparison with simply prescribing drugs for the non-specific
diagnosis of "behavioral control." Rutter[3] discusses the methodologic difficulties in determining the accuracy of comorbidity
in psychiatry, and whether this difficulty relates to errors in the prevailing psychiatric diagnostic concepts versus obscure
knowledge of neurobiologic disturbances. More research is necessary before the comorbid groups can be validated as meaningfully
different and underlying mechanisms can be identified. In the meantime, the syndromal diagnoses provide a valuable guide to
which treatments are most likely to work in any given PDD patient who is thought to have a comorbid psychiatric or neuropsychiatric
disorder.
In the community, the use of new pharmacotherapeutic agents in clinical practice often precedes the desired
large-scale efficacy and safety studies that would evaluate the drugs' effects on populations such as children, the elderly,
and the developmentally disabled. Thus, many new psychoactive drugs--including selective serotonin reuptake inhibitors (SSRIs),mood
stabilizers such as valproic acid and gabapentin, and the serotonin-dopamine antagonists(SDAs), already in wide use in those
with normal IQs--remain underutilized among individuals with autism and other PDDs. In many cases, clinicians today continue
prescribing older drugs that were more frequently used to treat the nondevelopmentally disabled population 10 to 20 years
ago.
Aman and colleagues[4] surveyed 838 individuals with autism and found that, apart from those on antiseizure medications,
the largest group (12.2%) was still treated with the older "classic" antipsychotic drugs. These drugs, including chlorpromazine,
thioridazine, and haloperidol, are widely prescribed and even in the absence of movement disorders such as tardive dyskinesia
and neuroleptic malignant syndrome they can produce cognitive dulling, motor slowing, and other long-term effects. Apart from
prescribed medications, many of the currently used nonscientific interventions for autism, such as megavitamin treatment,
are expensive and potentially harmful. The newer medications, when prescribed with caution for comorbid syndromal conditions,
afford more effective treatment with potentially greater safety and fewer side effects. Nevertheless, scientifically designed
double-blind studies are urgently needed to establish the safety and efficacy profiles of these medications in the autism
population. The Aberrant Behavior Checklist-Community[60] is a useful adjunctive standardized assessment instrument which
a parent or teacher can fill out at clinic visits, rating behavior problems observed at home or at school.
Generally,
before medications are introduced, nonpharmacologic interventions should be considered. These are best managed by a behavioral
psychologist who specializes in developmental disabilities. However, seizure conditions (which may be subclinical), psychosis,
mania, or severe ADHD require at least some pharmacologic treatment to allow the affected patient to function in behavioral
programs. An improvement in attention span or stabilization of mood, for example, may render the patient more capable of working
toward goals and appreciating rewards.
It is important to emphasize the additional vigilance needed on the part of
clinicians and caregivers for the presence of underlying medical conditions that may lead to acute or insidious behavioral
deterioration. Persons with autism may be unable to communicate feelings of unwellness verbally to caregivers. Multiple factors
involving illness may then manifest as aggression or self-injury, especially if the person is pressured to continue with daily
routine or work activities. Common underlying causes of a new onset of behavior problems include infections or untoward effects
of medications. Influenza, ear infections, dental problems, migraine and pain of any kind are a few of the common causes of
a re-emergence of problems. Every effort must be made in these cases to treat the underlying condition medically and provide
a supportive environment for the person without adding unnecessary psychoactive agents. The reader is alerted to the fact
that, while researchers at the University of Kansas, Kansas City, have found this approach to be of great practical use, it
remains tentative until supported by further published research.
Clinical Approach to Pharmacotherapy
The neurobiologic/psychiatric
conditions occurring with autism that may respond to pharmacologic treatment and thereby relieve confounding symptoms that
impair the autistic individual's ability to function can be subdivided into 6 large categories:
Seizure-related behavioral
symptoms
Hyperactive-inattentive impulsive-distractible symptom cluster
Tics, Tourette syndrome, and movement disorders
Compulsive-sameness oriented-explosive symptom cluster
Mood disorder symptom cluster
Other or nonspecific behavioral
symptoms
Seizure-Related Behavioral Symptoms
Behavioral problems resulting from cerebral seizure activity or the
medications used to treat seizures are discussed first and foremost, to stress the importance of this issue. At least 25%
of persons with autism are likely to experience seizures.[5] Onset may occur during infancy, childhood, or adolescence, with
a lower new onset rate later in life. A routine electroencephalogram (EEG) and brain scan should be obtained in all newly
diagnosed cases of mental retardation or autism. Neurologic referral is appropriate for individuals with staring spells, syncopal
episodes, or behavioral deterioration after stopping or starting antiseizure medications.
Behavioral side effects
of the barbiturate-related agents, phenobarbital and phenytoin, may include irritability and depression as well as aggressive
behaviors such as biting, pinching, and kicking.[6] Ethosuximide may produce psychosis. Carbamazepine not uncommonly causes
behavioral disinhibition or worsening of mania in some persons with mental retardation [7] and can result in a low serum sodium.[8]
Gabapentin has been associated with a worsening of hyperactivity in some cases.[9]
Valproic acid, however, appears
to be associated with fewer behavioral side effects. This agent has been shown to have mood-stabilizing effects, as well as
beneficial effects on agitation and aggression in animals and in humans.[10] Changing from another seizure medication to valproate
by the add-on method to achieve therapeutic blood levels of 50 to 125 mcg/mL, followed by a gradual tapering of the other
medication, has often proven extremely useful Hyperactive-Inattentive Impulsive-Distractible Symptom Cluster Stimulants methylphenidate
(MPH), dextroamphetamine sulfate (DEX), pemoline, and new combination long-acting preparations such as Adderall are useful
but still understudied in children and adolescents with autism. Clear ADHD symptoms of inattention, distractibility, impulsivity,
and hyperactivity are stronger predictors of response than are age, IQ, or other comorbid diagnoses.[11] Children with ADHD
and less severe degrees of MR may show greater response to stimulants than those with more severe or profound MR [61] Use
of these stimulants in those with autism and/or severe or profound mental retardation,has met with mixed results, though Demb
reported that dramatic improvement may occur in individual cases.[12] At the University of Kansas at Kansas City, we have
found that low to moderate doses are most useful, that is,MPH 1 mg/kg/day, DEX 0.5 mg/kg/day, or pemoline approximately 2
mg/kg/day. Higher doses may produce withdrawn behavior as well as worsening of stereotypic movements and self-picking.[13-15]
Other side effects reported with high-dose treatment include anxiety, worsening of tics, nail-biting, weight loss, and if
extremely high doses are used, psychosis. Pemoline carries an additional (though rare) risk for hepatitis, which may prove
fatal.[16-18] Therefore, pemoline is not used as a first-line medication, and when it is used, liver enzymes should be monitored.
In these cases, it is important to educate family members, alerting them that they should contact the physician if jaundice
or dark urine develops.
Tics, Tourette Syndrome, and Movement Disorders
As mentioned, researchers at the University
of Kansas, Kansas City, have found low doses of clonidine or guanfacine to be useful in these cases. Preliminary results from
an open-label study of five prepubertal autistic children showed a significant improvement in movement disorders using the
serotonergic tricyclic clomipramine.[30] It is important to monitor morning trough levels of the tricyclic, using the aforementioned
guidelines. Prescription of low doses of an SDA, such as risperidone, may be necessary for resistant cases.
Compulsive-Sameness
Oriented-Explosive Symptom Cluster
Individuals with these symptoms have compulsive behaviors such as arranging, organizing,
or hoarding a restricted range of objects, to a degree that interferes with their daily functioning. When prevented from engaging
in these activities, or if redirected too rapidly to another activity, these persons may manifest explosive behaviors such
as yelling, aggression, or property destruction. Dysthymic or depressive symptoms such as crying spells, loss of interest,
loss of weight, or appetite and behavioral withdrawal may be present. In other cases, there may be associated manic-like symptoms
of overactivity, pacing, insomnia, sexual preoccupation, and euphoria or irritability. In the latter cases, treatment with
one or more mood stabilizers, such as valproic acid, lithium, and/or gabapentin, is often necessary before an impact can be
made on the compulsive behavior. Conventional treatment with SSRIs is used for this indication.
In two open-label
studies, explosive outbursts, aggression, and self-injurious behavior responded well to sertraline or fluoxetine.[31,32] In
the fluoxetine series, hypomanic-like side effects, including restlessness, insomnia, overactivity, decreased appetite, and
agitation, occurred in approximately 25% of subjects. In another double-blind placebo-controlled study, the SSRI, fluvoxamine,
reduced compulsive behaviors and aggression in 15 (50% ) of 30 adults with autism.[33]
In our experience, starting
low and going slow has proven effective. For example, we might begin with 12.5 mg daily of sertraline in 5-year-olds, with
a gradual increase to 25mg daily or 50mg daily in older elementary school-age children. However, behavioral disinhibition
is not uncommon with higher doses, and in many cases, is resolved by reducing the SSRI dose.[34]
Fluoxetine is available
in liquid form, permitting doses of less than 10 mg daily to be administered. Clinicians should exercise caution regarding
drug interactions related to the propensity for SSRIs, especially paroxetine and fluoxetine, to inhibit cytochrome P450 enzymes
involved in the metabolism of many drugs.[35] Potential interactions include those with phenytoin, beta blockers, theophylline,
ketoconazole, and others. Information about sexual side effects of SSRIs may be difficult to elicit in nonverbal individuals.
Results of trials with the serotonergic agent,fenfluramine, have generally been disappointing. An 8-week placebo-controlled
parallel design study of fenfluramine in 28 children with autism (mean age, 4.57 years) not only failed to show significant
results, but also suggested a negative effect on learning.[36]
Mood Disorder Symptom Cluster
Unipolar depressive
illness often responds to low doses of the SSRIs, as described. For resistant cases, venlafaxine in low doses has proven useful,
though controlled studies are needed in persons with this disorder. Bipolar illness in autistic persons is more often of a
chronic, atypical, mixed, or rapid-cycling nature. Manic symptoms include euphoria, mood lability, irritability, excitability
or laughing spells, or crying spells. Overactivity associated with mania may manifest as constant pacing, rocking, or walking
great distances away from home. Insomnia, hypersexuality, pressure of speech or incessant loud vocalizations, and aggression
are other symptoms.[37] Mood disorder symptoms may occur together with any of the other aforementioned categories of symptoms.
Polypharmacy -- using mood stabilizers together with other psychoactive medications -- may then be justified.[11]
To
treat aggression, an open-label trial showed valproate to be effective and safe as an add-on treatment in 10 adolescents with
autism or PDD and accompanying overactivity, euphoria or irritability, decreased sleep, and hypersexuality.[38] Doses resulting
in blood levels of 75-100 mcg/mL proved more effective than lower doses. Half of the patients were on other psychoactive medications,
including MPH, clonidine, lithium, thioridazine, and sertraline.
We have again found that to "start low and go slow"
minimizes side effects, although, controlled studies are needed. We start with 250 mg at night for 2 days, then 250 mg twice
a day for 2 days. We then increase gradually in this fashion to approximately 20 mg/kg/day, or to achieve a morning trough
blood level of 75 to 100 mcg/mL.
Results of another open-label series of 10 adolescents suggest the efficacy and safety
of valproic acid for aggression.[39] In this series, patients with mild and moderate mental retardation were included; however,
the number of subjects with autism and/or PDD was unclear. Another series, this time of three autistic children treated in
an open-label trial with valproate at doses of 250 to 375 mg/day resulted in language and social improvements in all subjects[40];
all had documented EEG abnormalities. Valproate has the advantage of availability in liquid form (Depakene), although it may
be associated with slightly more gastrointestinal side effects and should be given with food. It is worth noting that in 3
other open-label trials involving 25 patients with mental retardation, valproate produced marked improvement in assaultiveness,
aggression, and self-injurious behavior.[8,41,42]
In chronic, mixed, or rapid-cycling mania, more than one mood stabilizer
may be necessary. Addition of a low dose of lithium or gabapentin in divided doses with meals may enhance the partial improvement
achieved with valproate. Gabapentin is administered at 10 to 20 mg/kg/day in divided doses with meals, and thus far, appears
relatively safe, provided that renal function is not impaired.[42] Levels of gabapentin are not routinely monitored, though
a level may be obtained to check patient compliance. In severe cases or during exacerbations, addition of a low-dose neuroleptic
to two mood stabilizers may be necessary. Low doses of risperidone, olanzapine or loxapine may be best in terms of less movement
side effects or sedation.
Lower-potency neuroleptics, such as thioridazine or chlorpromazine, often produce sedation
and sluggishness, blurred vision, and postural hypotension. High-potency classic antipsychotics, such as haloperidol, often
produce severe extrapyramidal side effects after a period of some delay. These may interfere with persons' ability to eat
and drink without spilling, or may even cause the chair they are sitting on to shake. Addition of and rapid dosage increase
of anticholinergic drugs, such as benztropine, may further complicate the situation by causing mental confusion. Tremor is
more likely using the combination of lithium, valproate, and a neuroleptic. McElroy and Weller[43] describe the drawbacks
of antipsychotic use for more than a 3-week period in bipolar disorders. These disadvantages include an increased risk for
tardive dyskinesia, the masking of mood response, and the worsening of bipolar depressive symptoms.
Other or Nonspecific
Behavioral Symptoms
Children with neurobiologic/psychiatric and developmental disabilities, including autism, are more
likely to experience sleep-wake cycle disturbances. An open-label trial of oral melatonin 2.5 to 10 mg (fast-release preparation)
given at bedtime produced positive results in 82% of 100 patients,[44] and appeared safe. Onset of effect appeared to be with
the first dose in some, however, in others, several months of treatment together with initiation of rigorous sleep routines
and a modified bedroom environment were needed. Some multidisabled children were able to discontinue melatonin treatment after
several months, maintaining a normal sleep pattern. Double-blind placebo-controlled studies are needed. Controlled clinical
trials of the opiate antagonist naltrexone have been done in the autistic population. Although results show mild improvement
in hyperactivity, no improvement in core symptoms or aggression were noted.[27,34,45-49]
Studies of the ACTH 4-9 analogue
org 27766,[50] and of the 9-amino acid peptide oxytocin[51] are still preliminary.
Ratey and colleagues[52,53] reported
on an open study in which propranolol reduced aggression in six of eight hospitalized autistic adults using doses of 100 to
420 mg/day. Seven of the eight subjects, however, were also treated with concomitant antipsychotics or mood stabilizers.
Several
additional preliminary reports of risperidone efficacy, have been published.[54-58] In these studies, risperidone was used
to target nonspecific "dysfunctional behavior," aggression, self-injury, and property destruction. Dosages varied between
1 and 12 mg/day. Major side effects were somnolence, weight gain, galactorrhea, extrapyramidal side effects, and akathisia
at higher doses. The novel antipsychotic agent, clozapine, was effective in reducing treatment-resistant self-injurious behavior
in one patient.[59] Newer antipsychotics with different receptor-blocking profiles, such as olanzapine, and quetiapine, may
offer the advantages of risperidone without the risk of acute and chronic movement disorders.
Summary
The development
of many new classes of medications, as well as the range of pharmacologically different drugs within each class, is broadening
the options for understanding and treating individuals with autism and comorbid psychiatric illness. Similar DSM-IV diagnostic
categories are a valuable guide to diagnosis in this population although some criteria cannot be met, for example, in nonverbal
individuals ongoing vocalization may take the place of pressured speech. While maintaining a vigilance for seizures, physical
illnesses, and medication side effects, clinicians are now able to use low doses of psychoactive agents with potentially greater
safety and fewer side effects to achieve good outcomes. Nevertheless, scientifically controlled, long-term studies are urgently
needed.
**********************************************************
SURGERY AND ANESTHESIA
Source: http://www.autism.com/ari/kirz.html
Surgical Anesthesia and Autism
Letter to my fellow parents:
Dear
parents,
Your child needs a surgical procedure and an anesthetic. This can be a frightening experience
for any parent and their child. Add to this the special needs of a child with autism and many of us throw up our hands and
say, "How in the world am I going to get (us) through this one!" As a parent of two autistic boys I understand what you are
going through. There is always one more thing that we need to get our child through. As a board-certified anesthesiologist,
I also understand the problems faced by trying to anesthetize one of our special children. Here is a partial list of suggestions
and information for parents and anesthesiologists.
1. Schedule a preoperative visit with your child's
anesthesiologist if at all possible. Sometimes it may be with an anesthesiologist in the group, but may not be the anesthesiologist
who will be taking care of your child. If this is not possible ask that your child's anesthesiologist call you prior to the
date of surgery.
2. Read number one again. A preoperative visit or phone call is the single most
important thing you can do to ensure a smooth experience for everyone involved. Discussing your child and his or her particular
needs, fears, communication level, ability to cooperate and understand with the anesthesiologist will go along way toward
easing everyone's anxiety.
3. Listen to the anesthesiologist. There are many acceptable, safe approaches
to anesthesia. Anesthesia is not an exact science. I like to compare it to baking a chocolate cake. You can use cake flour,
wheat flour or rice flour, (for the GFCF among us). Margarine, butter or oil? Baking chocolate or cocoa? Eggs or egg substitutes?
There are many ingredients and many choices. It is best to stick to what the cook (anesthesiologist) thinks is best and is
most comfortable with. If your child is taking medications the anesthesiologist will have some very specific directions for
which the child should take the day of surgery. Listen very carefully to the instructions about not eating prior to surgery.
This is very important. Your child could get a dangerous pneumonia if anesthetized with a tummy full of food.
4.
After reading number 1, 2 and 3 remember that if for whatever reason you are not happy with what you hear from your child's
anesthesiologist you can request a different one. Feel free to ask the anesthesiologist if he or she is at ease with your
child's special needs.
5. Prepare your child as you would for any unusual activity. You know your
child the best. If social stories or pictures work for him or her do that. If you think a preoperative visit to the hospital
would help, ask for that to be arranged. Read a book, sing a song, do a dance.... whatever will help your child to understand
what is going to happen to him. Of course you need to know what exactly will happen too. Be sure to ask for the exact sequence
of events. When does he need to put on the hospital gown, will they draw blood, does he get an IV (and when) can he bring
a favorite item into the operating room with him. Who will be there when he wakes up? Ask, ask, ask, then call them back and
ask the questions you forgot.
Thumb nail sketch of Anesthesia
Anesthesia can
be broken down into three basic types: general anesthesia, regional anesthesia and sedation anesthesia. (Otherwise known as
MAC anesthesia or monitored anesthesia care.)
1. General anesthesia: What most of us think of when
we say anesthesia. This is the big deep sleep during which the patient is totally unaware of his surroundings. This is the
type of anesthesia that most of our (and other) children will need to undergo for most surgical procedures.
2.
Regional Anesthesia: Spinal anesthesia, epidural anesthesia, and individual nerve blocks. The patient is awake and aware but
many are a little sedated. Would be used in our kids only if they were exceptionally cooperative. Very rarely done as the
sole anesthetic in children even the typical ones. May be used with general anesthesia to provide additional pain relief after
the operation.
3. Sedation anesthesia: Patient is groggy but not totally asleep, as they would be
with a general anesthetic. Might be used for minor procedures such as x-rays or CT (CAT) scans. (My child had this kind of
anesthesia for a special x-ray procedure on his bladder. I was convinced that he would need a general anesthetic, but I listened
to my child's anesthesiologist and went along with his plan instead ... guess what? The anesthesiologist was right, my child
did fine with this for this particular procedure.)
I will focus a little more on general anesthesia
since most of you will be facing this option. I will discuss the process your child will probably go through, and some of
the choices you and your child's anesthesiologist will have to make.
A general anesthetic can be
broken down into five basic steps.
1. Preoperative (in the holding area waiting to go to surgery)
2. Induction (go to sleep)
3. Maintenance (stay asleep)
4.
Emergence (wake up)
5. Post operative (in the recovery room)
Preoperative:
This
is where your child will change into a hospital gown, meet the anesthesiologist (again ?!) and have any last minute questions
answered. This is where a sedative may be given. The use of preoperative sedative is a good thing to discuss prior to the
day of surgery. Preoperative sedatives are not an absolutely necessary item in doing a general anesthetic. However the majority
of anesthesiologists who work with young children (6 and under) often use some type of medication to allow an easier transition
from parents
to operating room. The use of preoperative sedation is very common prior to surgery for
adults as well. No matter how well prepared your child is, a small amount of medication may be necessary to transition into
the operating room. My concern in this area as a parent and an anesthesiologist is that sometimes the medication can be used
in place of preparing the child ahead of time and instead of talkng to the child in the preoperative area. Because of our
children's communication difficulties we (parents and professionals) too often assume that the children do not understand
what is happening.
The most common options for preoperative sedation may include:
1.
Midazolam (a Valium like medication) given by mouth, as a nasal spray, in a shot or in an intravenous line
2.
Ketamine (a sedative ) given by shot, by mouth or in an intravenous line
3. Chloral hydrate (a sedative)
given orally or in the rectum
4. Brevital (a sedative barbiturate) given in the rectum
In
your place, I would discuss with my child's anesthesiologist the need for the sedation. I would also inform the anesthesiologist
of any unusual reactions my child has had with any medications.
Induction:
This
generally occurs in the operating room with you now pacing in the waiting room. Some hospitals have induction rooms, which
allow the parents to be present at the induction of anesthesia for their child. (I was present during the induction of anesthesia
for one of my boys ... to be honest I am not sure I would do that again). Induction of anesthesia can occur in one of two
ways, by mask with the child breathing an anesthetic gas or by an intravenous injection of a sedative drug followed by the
child breathing the anesthetic gas. This is absolutely one of those areas you need to discuss with the anesthesiologist prior
to surgery. For children younger than about 5 years old, typical or autistic, most anesthesiologists would opt for a mask
induction. (Child breathes the anesthetic gas.) Over the age of about 7 to 9 years in a typical child many of us opt for placing
an intravenous line in the holding area and inducing anesthesia through that line. For those of us with autistic 8+ year olds
we have some choices. My bias is that with the use of EMLA R cream (a local anesthetic cream applied directly to site where
the intravenous line is to be placed) many of our slightly older autistic children would tolerate an intravenous line placement
in the holding area. This of course depends very much on you and your child and of course your child's anesthesiologist. My
practice in this area varies from child to child. The advantage to a mask anesthetic induction is that the child can be asleep
before the IV (intravenous line) is placed. The disadvantage to a mask anesthetic is that it can be very unpleasant for the
child and the child can become very agitated.
Maintenance:
A combination of
medications given either intravenously (placed after the child is asleep if a mask induction is done) and inhaled. Most general
anesthetics require the placement of some sort of tube in your child mouth and throat to protect his lungs and deliver the
anesthetic gas. This could be an endotracheal tube or an LMA (laryngeal mask airway). The choices of what to use, how much
to give and when to give it are the topics for an anesthesia training program and ongoing medical education. You may want
to emphasize with your child's anesthesiologist that you think your child will do better if he can be awake, alert and back
to normal for him as quickly as possible.
Emergence:
Whatever medications used
to continue the anesthesia are allowed to wear off, are reversed, or are turned off and exhaled.
Post
operative:
Specially training nurses monitor your child until he is awake and out from under most of
the influences of the general anesthetic. Pain medications will be given if needed. This is an area of concern, as even a
typical child may wake up confused or disoriented. Ask when you can be with your child to help get him reoriented.
What
your anesthesiologist wants to know:
Your child's age
Your child's weight
Medical
history: things like heart, lung, and kidney problems
Allergies: drugs and environmental allergies, adverse
or unusual reactions
Medications: all of them ... (don't worry if you get some funny looks, my kids are
probably on them too)
Previous surgeries and anesthetics: What was done and how well did it go.
Family
history of problems with anesthetics
Child's ability to communicate, both expressive and receptive
What
can be done to help transition your child into the operating room
What can be done to help your child
in the recovery room
-----------------------------------------------------------
Letter
to my fellow anesthesiologists:
Dear Colleagues,
I know what a challenge
anesthetizing an autistic child can be. As a board certified anesthesiologist and a parent of two autistic boys I have been
on both sides of this problem. I would not presume to dictate your anesthetic practice. As you know most autistic children
are physiologically healthy and tolerate general anesthesia very well. There are a few items I would like to remind you of,
if you do not routinely work with this population.
1. Currently medical science has not elucidated
the cause of autism. There is some very promising work being done. Certainly this is a metabolic- physiologic problem not
caused by a psychiatric trauma.
2. No two autistic children are alike. This is really a diagnosis
of symptoms and signs. You cannot treat them the same because they are not the same. When medical science gets this figured
out there will be multiple etiologies for this syndrome.
3. The unifying symptom that these children
have is difficulty with communication. They may not understand what you are saying and may not be able to express what they
are thinking. My very strong bias is that most of an autistic child's behavior problems stein from a frustration with not
understanding and not being understood.
4. With number three in mind, I believe that our job as anesthesiologists
is to not only safely anesthetize them, but to try to return them to their baseline as quickly as possible. A person with
an altered perception of reality will not improve if we further alter their reality. For example, a drug such as ketamine,
which alters sensory perception, would not be the first choice for a person in whom auditory, visual and tactile senses are
already altered.
5. Please listen to the parents and caretakers of your autistic patient. They really
do know this child the best. Know that many of these parents have been beaten up by our medical system. Our medical colleagues
have too often not listened, attributed all physiologic symptoms to the "autism" (autism causes diarrhea ... I kid you not....)
Our colleague often base treatments and prognosis on data 20 years out of date. Forgive them if they are a little irritable.
They have had to be advocates for their child's education, insurance coverage and they are likely just trying to ensure that
the perioperative period goes as smoothly as possible. They want the same thing for their child that you do for yours!
**********************************************************
Preoperative Work-up
Preparing for anesthesia begins before the procedure. In general, the preoperative workup involves
getting a health history on your child, along with a physical exam. Experts will assess the child from a psychological perspective
to determine the best way to sedate him and separate him from you, depending on his age and state of mind. Laboratory tests
also will be performed if they are determined to be helpful in the pre-operative evaluation.
Then
a physical exam, generally done by an anesthesiologist, will include an examination of your child's airway, heart, and lungs.
It also includes an exam of his veins for intravenous line (IV) placement. An IV line is sometimes used to provide fluids
and medications during the surgery.
During the preoperative evaluation, the anesthesiologist will
discuss the anesthesia and what you and your child can expect. Education is important because the more calm, informed and
relaxed you are, the more relaxed your child will be, too. The anesthesiologist will also discuss the importance of making
sure your child has nothing to eat or drink for a period of time before surgery. This is important to prevent vomiting and
aspirating (breathing in) stomach contents during the operation.
Care During Surgery
The
actual beginning of the intraoperative anesthesia begins with induction of the patient. "Induction" is the the transition
between the normal alert state of awakeness and the "sleep" of anesthesia. Induction may be by way of an oral medication,
a "shot," or by inhaled anesthesia gases. The best way to induce anesthesia is determined to a great extent by the child's
age and the physical and psychological assessments.
Children often have their own fears about the
anesthesia and surgical procedure. A child's age and developmental level play a large role in what fears he has about receiving
anesthesia. There are distinct age groups, each with its own anxieties. Here are some general comments about these groups.
Keep in mind these are generalizations that vary from child to child.
Under One Year Old
Has
not developed fear of nonfamily members
Is unconcerned about what the health-care provider is doing
Will
separate easily from family members
Has no recall of the induction experience
Toddler
Is verbal, yet can't interact meaningfully with health-care provider
Fears needles,
so anesthesia is usually done with mask induction
Doesn't separate easily from parents; sedation may
be necessary
Three Years to Seven/Eight Years Old
Fears needles
Fears
being separated from parents
Feels more secure being with parents in a preoperative holding room or induction
room until he falls asleep
Nine Years and Above
Can articulate his fears
Is concerned about exposure of his body parts during surgery
Is concerned with cutting
and scarring of his body
Is concerned with loss of control
Is worried about postoperative
pain and death
Children are often highly sensitive to the fears and anxieties of their parents. A
calm parent sends a different message to the child than a terrified one. Your doctor or nurse educator will help you explain
anesthesia and surgery to your child. One piece of advice you might hear is to avoid the phrase "being put to sleep," since
that may worry some children.
One common concern children have is whether or not they will receive
a needle, and if so, will it hurt. A kind of local anesthetic cream can be rubbed on the skin to remove the pain of needle
pricks when starting an intravenous line. This usually works well with children by helping to soothe their fears of getting
a "shot."
After induction, the anesthesiologist monitors your child's vital signs and maintains the
delivery of anesthesia to the child during the operation. Some of the things the anesthesiologist will monitor are:
Body
temperature
Blood pressure
Heart rate and rhythm
Oxygen content
of the blood
Concentration of oxygen in the anesthesia gases
Fluids the child is
given
In the United States, the most common way to maintain general anesthesia is by inhaling medications
through a mask or a breathing tube inserted into the child's trachea. The advantage of inhaling an anesthetic is that for
the most part it is not being metabolized. Its effect on the body ends soon after it is turned off.
Under
general anesthesia, the child is unconscious. For some surgical procedures,however, the child can remain awake and anesthesia
will be delivered to just one area of the body. This is called regional anesthesia, and it may be delivered via a catheter
into a space inside the child's spine.
Postoperative Care
The final phase
of anesthesia is the postoperative phase. The surgery is over, but the pain may not be. Children may wake up in pain and think
they'll have pain for the rest of their lives. Children need to know they'll have some discomfort after the surgery, but the
pain will go away over time.
Tell your child that the pain will get less and less every day, and
he will be taking medicines to help in the meantime. In some cases, your child may be allowed to give himself pain medication
with a patient-controlled analgesia (PCA) pump hooked up to an intravenous line. You may be worried that this will create
a pain-killer dependence that can lead to addiction. Studies have shown, however, that patients use proper amounts (or less)
of pain medication when they have the opportunity to choose in this way.
In the recovery room the
anesthesiologist will make sure the child is making a smooth and comfortable transition from an anesthetized state to an awake
state. This includes:
Being free of nausea
Breathing comfortably
Regaining
airway reflexes
Having any blood loss during surgery adequately replaced.
The
safety of anesthetic procedures has improved dramatically in the past 25 years,thanks to advances intechnology and the training
anesthesiologists receive.The use of pediatric anesthesiologists enables surgical procedures to be performed and postoperative
recovery to be completed with a minimum of physical and psychological stress to your child.
**********************************************************
THIS DENTIST VISIT IS ANYTHING BUT ROUTINE
Source: http://www.newsadvance.com/MGBZFP77SNC.html
Jun 9, 2001
By Cynthia T. Pegram
The News & Advance
CHARLOTTESVILLE
- Kim Shrum, hungry and thirsty, offers no resistance when asked to drink the small amount of what looks like Kool-Aid in
a paper cup.The drink contains a sedative that makes people drowsy, compliant and creates amnesia of the time period while
it's effective.
This is how the 34-year-old Shrum makes it through a visit to the dentist. The tiny
woman is mentally retarded, autistic and virtually mute. Her anxiety in the presence of doctors and dentists means she has
to be sedated before her teeth can be cleaned or filled. So, in what's become a yearly event, her mother Bettie Jo Shrum helps
her daughter get dressed and ready for the dentist and a four-hour round trip to Charlottesville.
For
Bettie Jo Shrum, Kim's routine dental services are almost unaffordable. The more than $300 and the four-hour round trip are
a bargain. In Lynchburg,if she could find a dentist willing to take a morning away from the office, Kim would have to have
the work done in the hospital, which costs in the $1,200 to $1,400 range. As a mentally retarded adult, Kim gets many services
under Medicaid. But the public insurance program only covers dental services for children, not adults. Kim is not alone in
her need.
Tim Shepherd, executive director of the ARC of Central Virginia, estimates that Central
Virginia has some 400 mentally retarded adults who need routine dental care but can't get it. It's a problem now being discussed
by dentists from the Lynchburg Dental Society and Centra Health. The first meeting is likely to be this month. But until an
answer comes along, mother and daughter will follow the routine that they did on a recent spring day.
They
left their Campbell County home before 7 a.m. for the 8:30 a.m. appointment with pediatric dentist Dr. Kathryn Cook in Charlottesville.
Because of the upcoming sedation, Kim had to miss breakfast, her favorite meal. She has a kind of bleakness about her as she
rides in silence in the backseat.
As she drives, Shrum talks a little about their routine dental
care. This time, before the appointment, Shrum had to find a pharmacy to fill the prescription. Because drug abusers, and
those with "date rape" intent seek the amnesiac, it's closely monitored and hard to get. Finally, a Charlottesville pharmacy
was willing to deliver the drug to the dentist's office. It costs upwards of $75 per dose.
Dr. Cook's
office has a small waiting room where the sign-in desk is watched over by a soft-sculpture tooth fairy. A giant plastic bumblebee
sits on the window sill. Cook, dressed informally, has a gentle low-key style. During her treatment, Kim is the only patient,
for it takes just about everyone in the office. About 15 minutes after taking the sedative, Kim begins to get wobbly and tries
to walk, but Shrum puts her arms around her daughter, holding her close, persuading her to sit down. It takes about the same
amount of time before she is anesthetized enough to begin the work on her teeth. As a precaution, Kim's heart rate, oxygen
saturation and breathing will be monitored electronically while her teeth are cleaned and two tiny gum-line cavities are filled.
"It is a conscious sedation," says Cook. "It gives an amnesiac effect. "They don't remember the health
procedure at all." Cook has training in general anesthesia, and in conscious sedation, which Kim is undergoing. "It reduces
their anxiety and allows them to be comfortable in a dental setting where otherwise they wouldn't be," said Cook. "I believe
any dentist can do sedation, but they have to have a special training course that they would get in a residency program or
a dental school," said Cook, who graduated from the Medical College of Virginia's Dental school. She did her residency at
St. Christopher's Hospital in Philadelphia, Pa.
When she does a lengthy procedure, in which she has
hours of working time, she has an anesthesiologist who assists her. An anesthesiologist is a medical doctor. "I do sedate
a few special needs children, mostly autistic children that can't be handled in a regular dental setting where we do a conscious
sedation like this, or general anesthesia," said Cook. Cook has patients who travel further than Kim, some traveling three
hours each way. With her training, and the precautions she takes, however, for her, the risk is minimal though the patients
can be difficult. She sometimes takes adult patients like Kim. "I feel like I'm able to do it," she said. "I'm trained to
do it. I should do it."
One of the rewards is to develop a rapport with longtime patients. "Eventually,
some people we'll sedate for a while, and they get so used to coming, they don't need sedation," Cook said. Older handicapped
people often have a very hard time cleaning their teeth.
Some for example have other complicating
factors. Kim, for example, can't spit. Kim's in the chair for more than an hour. Then it takes another 30 minutes or so for
her to regain enough steadiness to be helped to the car. Kim soon tilts sideways, head on pillow, and quickly falls fast asleep.
Shrum has found a way to get her daughter the dental care she needs.
The more common problem, however,
is a mentally retarded adult who doesn't have severe anxiety but can't find a dentist willing to accept him. "It's extremely
frustrating," said Jane Harris, of DePaul Family Services, an agency that serves about 60 mental retarded adults living in
family foster care. Dental care is available, "but the foster family has to pay for it," said Harris. Some dentists have been
willing to let the patient pay. Medicaid waiver allows $30 a month personal spending money, and some dentists let the patient
pay $5 or $10 until the cost is covered. "It's difficult," she said. "People are still intimidated by the population.
Some
refuse to see people with MR." Some do, however, like Dr. Kyle Wheeler, a Lynchburg dentist and immediate past president of
the Lynchburg Dental Society. "There are some patients we can handle, and most dentists can handle in their offices adequately,"
he said. But if the patients' understanding is below a certain level, or if they develop behavior problems, they have to be
sedated to give them care, said Wheeler. "That leaves most of us in the dust," he said. "I don't feel comfortable handling
that."
According to Shepherd of The Arc, the best solution is to get legislation to require Medicaid
coverage for adults who are covered under the program for home and community-based services. That means that when care is
available,the clients will have the money to pay for it. That process is now under way, he said, and the hope is that it will
be passed in the next legislative session. But many people also think the answer lies in a hospital-based dental clinic.
Dr.
Ed Overman, a dentist at the Central Virginia Training Center, is active in trying to get that accomplished in Lynchburg,
as it has been done in Roanoke. "This clinic would serve more than just mentally retarded people. It would serve people in
the community who need a hospital setting," said Overman. That can include a wide range of people who have medical problems,
such as breathing difficulties,which make routine dental care more risky than for the general population. And it would include
the mentally retarded who need sedation for dental care.
"We need the expertise of hospital people,"
said Overman. He believes a community clinic is a realistic goal. "I am very hopeful, and more and more optimistic all the
time," said Overman. "What we really need to assist Centra is a change in the Medicaid waiver that would include funds for
dental service and especially for hospital-required
settings. "There is no question that we in Central
Virginia need this facility. It's going to be one busy place."
***********************************************************
source url: http://www.autism.com/ari/dental.html
Dental Anesthesia for the Autistic Child
I am a member of
the anesthesiology faculty at Stanford University Hospital, writing in response to the question of autistic children requiring
anesthesia for dental procedures.
There are no data
that any anesthetic drug(s) cause or worsen autism, nor are there any published data on preferred drugs for anesthetizing
autistic children.
Dental anesthesia
is usually performed in the dentists office. The mandatory requirements are: (1) that an M.D. (or sometimes a D.D.S.) anesthesiologist
experienced in dental and in pediatric anesthesia does the anesthesia care, and (2) that standard hospital operating room
monitoring instruments (e.g., pulse oximetry, ECG, and blood pressure), and resuscitation equipment (including a defibrillator)
are present in the dental suite.
If the child has
serious medical problems (e.g., heart problems, breathing problems, seizures, or airway problems) it is sometimes unsafe to
give anesthesia care in the dental office, and the dentist will need to do the procedure in a hospital room setting. This
decision is made by the anesthesiologist.
Our standard of
care is to make a preoperative phone call to the parent(s), both to obtain information on the childs medical history, and
also to describe the anesthetic planned for the child.
The preferred technique
for dental office anesthesia is deep sedation, where the child is asleep, without awareness of pain, is breathing spontaneously,
and has stable vital signs. The anesthesiologist is in constant attendance.
The anesthetic begins
by sedating the child so that an intravenous (IV) can be inserted. There are two common ways to do this:
(1) If the child is cooperative, oral midazolam (Versed), a Valium-like sedative, is given. The
child will become relaxed, sleepy, and will separate from the parents with minimal distress. The IV is then started in the
operating suite, using a small amount of local anesthetic injected into the skin.
(2) If the child is emotionally uncooperative, an injection is given into the muscle of the shoulder or thigh. We use
a combination of midazolam, ketamine, and atropine. This combination reliably produces a sleeping child in 5 - 10 minutes.
At this point, the child is separated from his parents, and the IV is started in the operating suite.
The monitors of vital signs are applied to the child, including the pulse oximeter, the electrocardiogram, the blood
pressure cuff, and a stethoscope. Additional sedation is added via the IV as needed to maintain the deep sedation state safely.
Typically we add narcotic pain relievers such as meperidine (Demerol), or the short acting sedative propofol. Local anesthetic
is sometimes injected by the dentist.
When the dental
procedure is finished, the child stays at the facility until safely aware. This usually requires a minimum of 30 minutes.
Post-anesthesia
side effects are sleepiness, sometimes nausea, and in some children, aggressive behavior or agitation.
When dental sedation
is done by an experienced anesthesiologist with modern monitoring equipment and medications, the rate of major complications
should be low. The risk of driving in the car to the dental office should exceed the anesthetic risk.
Please refer to
our anesthesia website at www.aamgpaloalto.com, particularly
the sections on dental anesthesia and pediatric anesthesia. Email response is provided.
Richard John Novak,
M.D.
Clinical
Associate Professor
Stanford Department of Anesthesiology
*****************************************************
AUTISM CARDS
NARY (The National Autism Registry)
is committed to helping autistic individuals and their families live more enriching lives. Families are
now able to visit places that they were unable to visit before. Utilizing these cards not only helps the family deal with
the situation at hand, but also helps to educate the general public about autism. Increased awareness will help improve the
lives of autistic people all over the globe. They were developed by The agency is owned and operated by Valerie Herskowitz,
a veteran speech pathologist with more than 22 years experience.
The first card helps families to avoid wait times in public
facilities such as restaurants and amusement parks. Often families shy away from these experiences due to the fact that their
child is unable to tolerate long wait times. By presenting their NARY card, many establishments gladly allow immediate access
to these parties.
The second card is used when the autistic individual
demonstrates undesirable behaviors in a public place. Many people experience embarrassment when this occurs. Looks and stares
by uninformed individuals only add to their uncomfortable feelings. This card helps to explain the reason that these behaviors
occur.
Visit Valerie's website for Autism cards and much more.
This is a website of a Mom whose children have Autism. She
has designed some very nice cards here that you can print off yourself and laminate to keep in your purse/wallet for those times
when you're out in public with your child(ren) and you're getting "those" looks or hearing "those" comments about your child's
behavior.
You can visit Jaime's site by clicking here.
Autism cards you can print out.
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Vision & Autism
The following article was published in The Newsletter of Achievers Unlimited, Inc., Fields of Vision, Volume 1, Number
6 (March 1996). Permission to post on the ASW homepage was obtained. The information contained in this article is for your
information and does not constitute endorsement by the Autism Society of Wisconsin.
Vision Development and Autism
At birth, the structure, size and growth of our eyes are almost complete. Once a baby is born, the eyes begin to learn
how to function effectively with his body and brain. In order to function effectively, vision skills must automatically develop
along with the baby's motor and cognitive development. Up to 90% of individuals with autism lack the vision skills which determine
how our eyes function. These skills have not developed automatically.
If an eye care professional can do the testing, we find most individuals with autism have 20/20 eyesight. Eyesight is
the ability to see a certain size at a certain distance, momentarily. Vision, or the way our eyes function, is the ability
to understand what we see, store the information, and retrieve what we know at a later time.
Vision is actually a set of skills and abilities including 20/20 eyesight, focusing, eye movement, two-eyed coordination
and tracking. Vision skills can be taught.
Normal Vision Development
At birth, babies don't see the world beyond their grasp. If you brush a newborns hand with your finger, the baby will
grasp the finger. Eventually, the baby will begin to look at your finger after he grasps it. At this stage of development
the tactile sense is directing the baby's vision. This is the first step in training the visual system.
There are many steps in developing the visual system automatically. Soon, the baby can locate an object visually, reach
for it and pick it up. By six months, the baby manipulates a toy with his hands, turning it around and around to allow his
visual system to examine the toy from all angles. By 12 months, the child can glance at that toy from any direction and know
that it is his toy.
As the visual system continues to develop it begins its lifelong task of directing the body and brain. The child learns
to visualize his toy, making it possible to learn the word for that toy: truck. Language begins to develop, directed by the
visual system. By 10 years of age, the goal of the visual system is integration: the ability to see an object, such as ice
cream and know that it is cold without having to touch it.
Vision Development and Autism
Visual development is erratic in a child with autism. Eric, age 12, does not know that ice cream is cold without touching
it. In Eric's case, his tactile sense is still directing his body, brain and visual system. Eric's world is confined to the
objects he can see within his grasp. Eric does not see anything that he is not touching. Eric's visual system is at the level
of a newborn infant.
The goal of a developed visual system is to direct the body. Since Eric's tactile sense is still directing his body, he
does not move out in space very well. Yes, he can sit and walk and run, but Eric's body never stops. He is constantly in motion,
constantly running. Like a newborn, whose body moves without direction, Eric has not yet learned to stop and start his body.
He doesn't have body awareness. If we want Eric to stop running, we have to touch him on the shoulder. If we want Eric to
sit in a chair, we have to direct him to the chair and press down on his shoulders. Jessica, age 8, has a visual system that
has not learned from constancy. She can spend hours holding and looking at a plastic cup. We know that Jessica can say the
word cup. However, if we give her a styrofoam cup, she cannot use the word cup to describe it. She has not visually integrated
the information. We don't know how much information she is receiving through her tactile sense.
Jessica's visual system is in place, but it is on idle. Her vision is reflexive, rather than directive. Her visual system
doesn't help her survive in the real world.
Like some individuals with autism, Jessica has a photographic memory to compensate for the lack of visual development.
As long as her environment remains the same, Jessica can function. If, however, the family sofa is moved to another part of
the room, Jessica becomes agitated. She does not know this is the same sofa, because she is now seeing it from a different
angle. Her ability to function in the family room setting is threatened. She cannot rely on her photographic memory. Jessica's
visual system is functioning at the level of a six month old infant.
Typical Visual Patterns Associated With Autism
Both Eric and Jessica have 20/20 eyesight, but they also have visual patterns that interfere with their ability to react
and interact with their surrounding. These patterns include poor eye contact, looking through rather than at objects, using
peripheral or central vision, and visually sweeping the room rather than looking at specific items in the room.
Splitting peripheral vision and central vision
Peripheral vision is using side vision. You can get the feeling of peripheral vision by putting your hand in front of
your face and looking around your hand. Some individuals with autism shift from the extreme right to the extreme left, moving
the head as the eyes shift. This results in picking up fragments of visual information, instead of the full picture.
Some individuals with autism switch from peripheral to central vision. Put your hand, once again, in front of your face.
Separate your fingers in the center of your hand. Now switch from side to side or look at a detail in the center. The visual
information is still fragmented.
Scanning
Scanning or darting is that constant shifting or sweeping motion. Again, put your hand in front of your face and continue
to shift your eyes from one position to another. You may notice objects in the room jump at you, swim, blur, or double. The
act of constantly scanning can lead to dizziness, headaches, nausea and disorientation.
Binocular problems
Seventy percent or more of individuals with autism do not automatically develop an efficient binocular (two-eyed) pattern.
Think of the eyes as being two cameras. They need to point, focus, move exactly to avoid blur or double vision. When the two
do not work exactly as a team, the individual experiences blur or double vision, or the brain conveniently suppresses vision
partially or totally. Total suppression of an eye eliminates some visual confusion but does not allow information to get to
both sides of the brain. Partial suppression leads to much confusion and visual stress making all visual tasks exhausting.
Poor visual attention
When the visual system is working correctly, the individual can see, understand what is seen, and remember what is seen
with speed, accuracy, at any time and with little energy. An inefficient system makes controlling the eyes difficult. Shifting
with exactness, and maintaining clear eyesight becomes exhausting. The physical effort is extensive, leaving little energy
to understand, remember or use what was seen.
The Effects of Erratic Vision Development
These visual patterns are caused by the lack of vision development skills, such as eye-hand coordination, eye-foot coordination,
eye movement control, convergence, difficulty with eye contact and eye-hand-foot-brain coordination. Vision skills impact
a child's ability to eat without spilling, walk without falling, and to be aware of their surrounding. Poorly developed vision
skills will affect a child's penmanship, reading, attention span and socialization skills.
Because vision development is erratic in an individual with autism, the visual system interferes with learning lifeskills
and academics. An inefficient visual system causes the following:
Inability to pay attention (child doesn't work at near for long because of blur or double vision)
Vision is reflexive rather than directive (touch directs the visual system)
Form constancy (cannot recognize an object from another angle, resulting in rigid behavior - don't move your furniture
around)
Language delays (lack of visualization)
Lack of integration (knowing ice cream is cold without touching it)
Inability to move out in space very well (cant see beyond his grasp)
Motor Development
Our visual system develops along with the body, not separate from the body. A child with autism has a visual system that
develops erratically. This erratic development is caused by a compromised motor system.
Motor development is the sequential development of the body, brain and eyes as a coordinated unit. For example, a child
needs to
creep before he walks;
walks before he runs;
runs before he skips;
skips before he jumps rope;
jumps rope before playing baseball or football.
This sequential development occurs on many levels. In order for a child to learn to write, he must learn the following
tasks:
suck his fingers;
observe his hands;
grasp a rattle;
eat finger foods;
give a toy to another person;
hold a crayon;
scribble;
watch his hand as he scribbles;
color;
and draw.
A properly developed motor system allows the child to explore and inspect the world with his sense of touch, smell, taste,
sight and hearing. Ideally, the child gradually becomes aware of his body and begins working to control the body's action.
As the child plays, his body's movement becomes more relaxed and fluid, causing his mind, body and vision to develop.
Lets say each of us is given 100 units of energy to use at birth. As a newborn, we use 100 units of energy to control
our body. We learn how to such out fingers, roll over, grasp a rattle, eat finger foods. As we grow over the first few years,
more and more units of energy are needed for developing our brains and visual system. By the time we are seven years old,
we need 75 units of energy to control our visual system and allow our brains to function efficiently. Only 25 units of energy
should be needed to control our body.
Healthy motor development allows a child to become aware of his body. A newborns first motor development stage a newborn
involves fighting gravity. The sequential development is
1) Body contact with floor
2) Sitting
3) Hand and knee
4) Standing
5) Walking, jumping, hopping, skipping
Between crawling and walking, a child learns to stop and start his body. When a child like Eric is unable to start and
stop his body, we know something went wrong in his fight against gravity.
The goal of the motor system in fighting gravity is to develop posture. Correct posture allows our body to balance with
a minimum of effort, so we don't have to use the majority of our 100 units of energy to sit, stand or walk.
An additional bonus of good posture is the efficient use of addition energy we need for vision and fine motor activities.
The muscles of the neck and trunk constantly adjust and hold the body in balanced relationship with gravitational forces.
Many of these same muscles are also used in maintaining the body's center of visual attention and for manual activities, such
as writing.
We have all experienced situation in which we had to sit through a lecture, speech or church sermon when we needed to
go to the bathroom. For a short period of time, our motor system is compromised. We need all our energy to control our body.
We are unable to focus on that portion of the sermon, lecture or speech. Eric and Jessica have motor systems that are permanently
compromised. They have poor vision skills, trouble paying attention, poor language skills, and learning difficulties because
all of their energy is used up in an effort to control their bodies.
The Hazards of Ignoring Motor Development
Visual development is erratic in children with autism, because their motor system is compromised. Unfortunately, motor
development, the most essential area in dealing with autism, is often neglected in pursuit of developing the child's intellect.
Remember, motor development is the sequential development of the body, brain and eyes as a coordinated unit. A child's
intellectual development is often limited by an inefficient body and visual system.
Eric, who is constantly in motion, lacks body awareness. He has to be constantly watched to keep him from running into
the street or any hazardous situation. He lacks the attention needed to learn the lifeskills needed for independence. His
visual patterns prevent him from integrating what he sees, making a classroom setting out of the question.
Before we can teach Eric the vision skills he needs to pay attention, visualize, integrate information and move freely
about, we must teach Eric's body to start and stop. In Eric's case it took six sessions.
Next, we try to get Eric's eyes involved in some way with an activity. Well start by slowly rolling balls to him to see
if his eyes can follow the ball. If that doesn't work, we might try getting him to kick a ball or balloon. Our goal is to
try to get Eric to use his eyes instead of his body.
If we cannot find a way to get Eric's eyes to participate in an activity, well look for another of his senses that is
most adaptable to change. We start with the tactile sense. Well stand next to him and move his body for him. If we want him
to kick a ball, well move his leg when its time to kick, hoping that his eyes will eventually begin to participate.
We don't know how much of a change we can make with Eric and Jessica. We don't know how long it will take to make the
changes. We do know, however, that any change improves the child's quality of life. Once Eric could start and stop his body,
the entire family benefited. The amount of stress involved with safeguarding Eric decreased. Dad and Eric now play catch for
hours each week and have fun doing it.
Understand the visual components that accompany each stage of healthy motor development is the key to teaching vision
skills that have not automatically developed in a child with autism. The next six issues of Fields of Vision will cover vision
development by age groups: 0-3 years; preschool years; elementary school years; high school years; adulthood; mature adult
years. Each issue will provide an overview of vision development for the particular age group and activities to teach skills
your child may be lacking. Adults and senior will learn activities to ensure their vision is not limiting them in jobs, hobbies,
sports, driving and independent living.
Fields of Vision is published six times per year by Achievers Unlimited, Inc., P.O. Box 297, Elkhart Lake, WI 53020 414-565-4205
toll-free 1-800-924-9897
Source: http://www.asw4autism.org/vision.htm
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