News Items, Poems, Stories ........
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The Autistic Spectrum |
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  Special Needs Support By Lori Borgman SOME MOTHERS GET BABIES WITH SOMETHING MORE... My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you¹re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder. Lori Borgman is a newspaper columnist and author. You can find her at: http://www.loriborgman.com Source url: http://www.helplaurenlearn.net/special_needs_family_support ******************************
So your child was just diagnosed with autism or AS... now what? The purpose of this web site is to give an "inside" view of autism, in its various forms, and to let people
that may not otherwise know that autism (including AS) is not a horrible tragedy. I've seen the same books, articles,
and web sites you probably have; the ones that portray being on the autism spectrum as being tantamount to the end of life
as we know it. I've seen the stuff that seems to indicate that if you just try the right therapy, the right program,
the right nutritional supplement, the "problem" will be solved. Everything out there seems to fairly scream that the
person with AS or autism is damaged, and must be repaired post haste. I am here to tell you that this is wrong.
Let me explore the differences between the autistic mind and the normal mind a bit here.
The depth of the difference in how the normal mind works and how the autistic mind
works is profound, and it may surprise you. I hope that by illustrating that, hopefully you will be able to see that
"fixing" the autistic is not a reasonable goal.
Normal people (which we in the autism community call "NT," for neurologically typical
or neurotypical) are social beings, like dogs. Dogs innately behave as part of a collective; they are pack animals.
In the wild, the "top dog" is the alpha male of the wolf pack; domestically, the top dog is the human master. A pet
dog delights in performing tricks for his master, even if praise is the only reward. A dog can be trained to NOT eat
a tasty morsel just because his master says not to, even if that dog is hungry. The dog's innate need to conform to
the collective needs of the pack (as defined by the "top dog") is so strong that it can overrule his own hunger. Although
the dog has free will (please, no email about sentience, self-awareness, or whether free will really exists; I am not talking
philosophy here), his predisposition to be a pack animal makes him automatically desire the same things that the pack wants.
This ensures cohesion of the group. If each dog (or wolf) was off pursuing his own interests with no regard to the pack's
needs, the pack would cease to exist. As such, social beings like dogs are not really able to distinguish what needs
are their own and what needs are those of the collective. Such is the nature of the social animal.
An autistic person is more like a cat. Cats are independent, solitary creatures;
their own needs are their only motive. You would be hard pressed to train a cat not to eat (for no other reason than
you say so) when he is hungry. The only way to do that would be to convince the cat that he would be negatively
impacted if he ate the food... in which case, he would still be acting in his own interest (not wanting to be punished), not
in the interest of the owner. A cat has no innate desire to please anyone but himself. A cat does not care if
other cats wish to do a certain thing; he does what he wants to do, and that is that. A cat has no concept of the needs
of other cats; even if he did, though, they would not concern him. Cats are inwardly motivated, not externally motivated.
To the parents of an autistic child, it can be horrifying to think that that child
will not automatically defer to the needs of the collective, which in this case is society. As a member of that society,
the parent will obviously desire for the child to fit in as well. It is tempting to push that child to fit in, and to
act like all of the normal people. Although the child may look enough like you to make you think that he really is pretty
much the same as you, the fact is that in his head, he thinks nothing like you do. On the outside, autism and AS seem
like behavioral abnormalities; bad habits that need to be broken. If you got to be on the inside for a minute, though,
you would realize that this is not the case at all.
The autistic person is as different from the NT person as a cat is from a dog.
While you, as a social being, are able to seamlessly blend into a group, the autistic person has no concept of what it means
to be a part of a group. He may not even realize that these other people are other living beings like him. They
may appear to be moving pieces of the landscape, no more important or similar to him than a tree or a rock. In time,
he will begin to understand, but the social connectedness, the ability to truly feel like a part of it all, will never be
there. He may learn to relate to others relatively well, and maybe to be social at times. Even so, he will always
be in a group only of one... himself. That is simply the nature of the independent being that he is.
There is nothing wrong with being a cat. In a world of dogs, though, it seems
abnormal and pathological. To beings that prize their ability to be a part of a collective, a condition that would cause
a person to be disconnected from that collective would seem like a horrible tragedy. To the person that is so affected,
it's just the way he is. Far too many parents harbor the illusion that their children can be taught to be normal.
Autism is a neurological disorder; it relates to the unusual structuring of the brain, most likely occurring during pregnancy
(and not as a result of vaccination). No training or diet or drug is going to change the structure of the brain.
Sure, autistics can be taught to act normal, but it is, indeed, just an act. No matter what the behavior, the ability
to feel a part of the collective will just not be there.
Normal people's actions in social situations are governed, in large part, by their
feelings of connection to the group. An autistic person has no such connection, and that is why the social behaviors
must be learned by rote. Without that connection, relating to others as if he were connected is just an act, and like
all acts, it is learned in a rote fashion, from a script. Mastery of that script does not make him normal or recovered,
any more than mastery of the M.A.S.H. script made Alan Alda an army surgeon. It's pretend; make-believe; not real.
The depth of the lack of connection is greater than a simple inability to conceptualize
himself as being one of the group. Many of the innate social behaviors and nonverbal communication methods are absent
as well. Not only does the autistic person find it impossible to truly see himself as part of a group, but he also lacks
the ability to use eye contact, body posture (stance), gesture, and other such things to communicate with others. He
lacks the ability to conceptualize the "unwritten rules" of conduct that govern action within society, but are never spoken
overtly. Normal people may never realize how important these things can be in ordinary relations with other people,
since they are processed subconsciously. Their importance is only really noted when the NT communicates with a person
that does not have these social functions enabled. In many cases, such interactions end in disaster, with the autistic
person normally on the losing end of the exchange.
The ability to presuppose what a normal person may already know, as well as the ability
to guess how an NT will be affected by various statements, are abilities built-into the NT person. Once again, these
are social functions that allow the NT to be the pack animal that he is. Like the other social abilities, the autistic
person lacks these. The ability to empathize with others is predicated upon the ability to read the nonverbal cues,
which teach the NT person early in life that others often have different opinions and moods than he does. Without the
ability to read those signs, the autistic person may never fully realize that. Higher-functioning autistics and those
with AS will recognize this difference in opinion and mood, but it will be cognitively mediated, not intuitive. Normal
people don't have to analyze someone to know what his mood or state-of-mind may be during conversation. It is automatic;
they get a feeling for it without even trying. Higher-functioning autistics (including those with AS) can often do a
remarkable job of figuring out what normal people may be thinking, but it is something that requires a lot of effort and thought.
It does not come naturally.
In the higher-functioning autistics, including those with AS, this cognitive substitute
for intuitive NT behaviors is normal, and it is fairly effective. Some teachers, therapists, trainers, et al, want to
teach social skills to autistics. While this may be difficult at first, they say, soon the social skills will become
ingrained, and the autistic person will do them automatically. What those well-meaning but misguided folks have missed
is that the foundation for the social skills (the ability to read the nonverbal cues) is not present-- nor will it ever be.
Even if you teach the autistic person how to read these signals by rote, it will be something he has to think quite hard about,
and while he is attempting to process these signals, he will not be able to concentrate on what the other person is saying.
Normal people have two channels for conversation: the cognitive channel, which processes
speech, and the nonverbal channel, which processes the nonverbal cues (eye contact, facial expression, body posture, gestures)
that many say make up more than half of the communication in a typical conversation. In autistics, the nonverbal channel
is not present. So, while you can teach the autistic to try to make eye contact, you cannot teach him to properly modulate
that eye contact in a communicative way, as NTs do automatically. He will neither be able to read the other person's
eye signals, nor will he be able to make any eye signals of his own. That is why attempts at eye contact by autistics
come off as stares. In time, autistic children that are badgered to make eye contact learn to fake it in one way or
another... by looking at the ear, the nose, or by looking "through" the person. You may think the child is making eye
contact, and is thus improving, but that is not the case at all. As one that has been looking "through" people for decades,
I know what I am talking about here.
NTs seem to be rather obsessed with getting their autistic children to make eye contact.
In doing so, they completely ignore that the autistic lacks the ability to make use of that eye contact. The assumption
seems to be that the ability to use eye contact is there, if the autistic person could only be trained to make eye contact.
The same assumption is made with regard to the other nonverbal cues. It's good to teach the autistic child that these
signals exist, but it must always be kept in mind that the autistic person will never be able to process them automatically,
as NTs do. Don't waste precious time in the early years trying to teach and ingrain social skills that the autistic
child has no ability to use. That time would be best spent rectifying sensory difficulties and getting the verbal processing
parts of the brain working. Worry about faking eye contact and other things like that later. The 0-6 years are
too critical to waste on such nonsense.
The autistic brain and the normal brain work very differently. Despite the normal
physical appearance of the autistic child, there is no normal child in there, waiting to be set free from his autism.
Sometimes an autistic child will seem to act normally for a while, and for that time you may think that he is "getting better."
Don't fall for that... if you do, it will only be that much more disappointing when you see the autistic behavior return.
The autism goes straight through to the core. Autism is like being of a different species; like a cat rather than a
dog. No matter what you do, that brain in that skull will be an autistic brain, thinking autistic thoughts. You
can train an autistic person to act normally, but don't mistake that for "recovery." Autism is not a mental illness
or a disease. It is a different state of being; like being a different species. If I train my cat to act like
a dog, he will be a trained cat, not a dog.
There is no recovery from autism. That does not mean that huge improvements in
function are not possible; they are, and if there is one thing I have learned about autism, it is that the best predictor
of poor outcome is low expectations. I am not saying that you should not act to help your autistic child be the best
he can be... I only want to let you know that the goal should be to make that person as successful an AUTISTIC person he can
be, and not to help him "recover." Despite what many parents are going to tell you, despite what many of the "experts"
that may themselves be selling an autism treatment program are going to tell you, the fact of the matter is (and it is a fact)
that autism is permanent.
Now that I have told you what autism is, let me tell you what it is not.
Autism is not the inability to communicate. I am autistic, and I am communicating
with you right now, am I not? Not all autistics can talk; not all that can wish to do so very much. That
can be helped, though, and the earlier you start, the better. Autism cannot be cured, but that does not mean that communication
difficulties cannot be. The autistic child will grow into an autistic adult, but that does NOT mean that the adult
he becomes must be nonverbal or uncommunicative. Being autistic is not the same as being uncommunicative.
Autism is not sensory difficulties. All, or nearly all, autistic people
have these to one degree or another. They can range from oversensitivity to touch or sound (which are both quite common
in aspies and very high-functioning autistics) to a complete garbling of sounds and images from the ears and eyes. Sometimes
they cycle between good and bad. A child with severe sensory difficulties may be totally unresponsive to you and to
the world in general. You may mistake that for the child being "in his own little world," or "lost in his autism," or
some equally trite phrase. Don't make that mistake. Sensory dysfunction is not autism. If you can get the
senses to work more effectively, the child will begin to connect with the world on his own. When I say that autism is
permanent, I am NOT saying that the child that seems lost in space will never be any better. Sensory problems can, and
should, be addressed, and again, the earlier, the better. If there is one area of autism where the "locked in a shell"
analogy was true, it is in the area of sensory dysfunction. This is probably the single most important area to remediate
in kids with these problems.
Autism is not violent behavior. Many autistic children (and some adults that
have not had effective help) may be abusive to themselves or to others. This is often a result of horrible anxiety,
anger, and frustration that build up when the autistic person is not able to communicate his needs effectively. The
child may be communicating the best he can, but because you may be looking only for more "normal" communications, you may
miss them. This is horribly frustrating to the autistic, who is very aware that he cannot get through to you no matter
how hard he tries. Your ways of thinking and communicating are as strange to him as his are to you, but he lacks your
years of experience. An autistic child may seem totally strange and even inhuman at times, but realize that he does
have feelings and thoughts and fears and needs, and that he needs those needs to be met just like any other child. You
have to make the extra effort to understand him, because he cannot do any better than what he is. Violent, angry behavior
is not a given in autistics of any age. It is a sign that some needs are going unmet.
Anxiety and fear are big factors in the life of any autistic person; children are certainly
not exempt from that. The worse the anxiety in the autistic child's life, the more he will tend to overreact to change
in routine, things that seem to be "wrong" (like an open drawer or something like that), et cetera. Remember that your
autistic child is like a fish out of water; nothing in the world makes sense to him, even to the extent that it does to normal
children. The world can be a very scary place to an autistic child. Do what you can to allay that fear and anxiety,
and you will probably notice that the "problem" behaviors seem to be less intense and frequent as you do so. If you
see them merely as "bad" behaviors, and you try to suppress them with disciplinary measures, you will often be worsening the
anxiety and frustration that caused those behaviors in the first place. Autistic children sometimes misbehave, like
any children, and they need to have limits set... but you have to be aware that not all "bad" behavior is as it appears.
It can be nearly impossible to know the difference, but you have to try.
I am convinced that a big part of my relatively meltdown-free, nonviolent childhood
was my mother's complete acceptance of me as I was, with no efforts to turn me into something else. My 'stim' behaviors,
like pacing, rocking, flapping, making silly noises, et cetera, were coping mechanisms, as they are in all autistic children.
If my mother had forced me to suppress these behaviors, the stress would have built up until it finally reached the meltdown
stage much more often. These behaviors are perfectly normal for autistics; don't think of them as undesirable because
they are abnormal for your neurology. They are not abnormal for your child's neurology; in fact, they are vital stress-releasers.
If you want to reduce the stimming, find out what causes stress in the child's life, and reduce that. It works.
I can't overemphasize the importance of reducing stress. Your child will feel better, behave better, learn better, and
be happier and more likely to be social or show affection if you can reduce the stress to a manageable level. And keep
in mind that things that you would not care about can cause more stress for your child than you imagine. It's not about
what your child "should" be able to tolerate; it is about what he can tolerate. If silly things cause stress for him,
fix them anyway. The child can learn to cope with those things later.
Autism is not mental retardation. That's a really scary sounding pair of words,
isn't it? I am sure that you are aware by now that 75% of de facto autistics (in other words, not counting people with
AS) are low-functioning, or mentally retarded. That leaves one in four that is not. Even though most autistics
are retarded as such, it's not the autism per se that makes them so... it's the sensory problems early in life, which I mentioned
above. The sensory dysfunction prevents the brain from getting the stimulation it needs during the critical developmental
years. Without that, the brain develops in a manner consistent with what we call mental retardation. The good
news is that if you can get the senses integrated as early as possible in life, the brain will get what it needs, and the
child will develop as high-functioning. Sensory integration is the single most important factor in deciding how an autistic
child will develop. Make the most of those early developmental years!
Autism is not your fault. There is nothing to be guilty about if you have an
autistic child. The theories of autism being caused by bad parenting have been absolutely, unequivocally proven to be
100% bunk. It is a biological thing, and it is not something you did wrong. There is no shame in having an autistic
kid. Please don't let your child get the impression that he is something to be ashamed of.
Autism is not a tragedy. It is a difference. The autistic way of thinking
is no less valid than the NT way. Different is not bad, or wrong. It is just different. It is true that
other kids may be harsh and unaccepting of those that are different, but whose failing is that? The lack of acceptance
of those that are different is a function of the pack animal mind. Autistics do not intrinsically dislike people from
different cultures, races, religions, or whatever. NTs innately see those that are like them as members of their "pack,"
and those that differ from them as members of a rival "pack," or as potential enemies. It takes a lot of effort to combat
prejudice in NT minds. That is not so in autistics. They are relatively unconcerned about others, so whether they
be black, white, Asian, et cetera, makes no difference. The lack of the "pack" identity prevents the autistic person
from seeing himself as part of a certain group, and it prevents him from grouping people that he is not like. To an
autistic person, people are individuals, not members of a group. In this way, you can see that it really is the NTs
that are impaired in this area, not autistics.
There are several articles on this site highlighting some of the good things about
being on the autistic spectrum. There are a few more that go more into detail as far as some of the "fix your autistic"
programs go, and why you should not try to do so. There is a purity you will find in autistics... a beautiful quality
that you will not find in NTs (at least not for long). If you quit looking at them as broken normal people, and start
seeing them for the neat whole people that they are, you will begin to see them as I do from my perspective. Throw away
your preconceived notions of what your child would have/should have/will/won't be, and embrace the child as he is. I
know it is hard to do, but for your child's sake, you must. Accept the autism/AS, but don't listen to those that tell
you the child is hopeless, or that he will never be able to take care of himself. Low expectations cause low results.
Don't expect the unreasonable (like for the autism/AS to go away), but don't go to the other extreme either. Push to
make your autistic child the best, most successful autistic he can be, and you may just be surprised by the results.
What is Asperger's Syndrome? © Frank Klein
Note: This article was written when this web site was entitled "Aspie Advocacy." When I realized that I am more properly HFA (high-functioning autistic) than aspie, despite my many similarities to aspies, I decided that a bifurcated view of AS and autism did not make sense. Thus, I changed the name of the site, as well as the editorial "slant," to reflect the unified nature of the spectrum as a whole. That is why I recently changed the title in the link to this article. However, for the moment, I am leaving the article as it was written originally. Keep in mind that when I say "aspie" in this article, I refer to all people on the higher-functioning end of the spectrum, regardless of which diagnosis they may have. Asperger's syndrome is a form of autism. Autism, in all of its forms, is what is called a pervasive developmental
disorder. In essence, it is a slight difference in the construction of the brain, probably present since birth, that
affects the way the child develops. It's not a mental condition... it is a neurological difference. Although the
terms that describe it (syndrome, disorder, et cetera) have onerous connotations, it's more accurate to simply say that so
affected individuals are different.
Most of the differences relate to the way that aspies (a term that people with Asperger's Syndrome use to describe themselves)
communicate with others. They tend to have a rather straightforward style, and that has several implications.
First, the roundabout way in which normal (neurologically typical, or NT) people communicate is replaced with a rather blunt,
sometimes apparently tactless approach. Aspies say what they are thinking, and there is no such thing as beating around
the bush. They don't "say things without saying them," or lace their words with innuendo or hidden meaning. There's
no subtext... what is said is what is meant, and it is that simple. NTs often have a hard time figuring out what an
aspie means, simply because he (the NT) is not accustomed to interpreting the words completely at face value. They often refuse
to believe that there is no hidden meaning, or that the comments they interpret as rude or harsh are actually meant to be
helpful. This can cause hard feelings and misunderstandings, and unfortunately the aspie is usually on the losing
end of the exchange.
Aspies communicate and interpret language literally. That's not to say that they do not make use of metaphor or
simile; in fact, many of them show rather advanced use of such concepts. However, the basic mode is to use words in
a very unambiguous and precise way. Precision and clarity (and often verbosity) are the hallmarks of typical aspie speech
and prose. Aspies typically use a formal manner in everyday communications, written or spoken. While odd to NTs,
this is an outgrowth of the aspie preoccupation with precision and accuracy in the use of language.
As children, aspies lack the inborn "detective skills" to automatically determine and integrate the "unwritten rules"
of personal conduct and body language (often including facial expressions). Parents do not have to actively teach their
children to recognize these nonverbal cues, because the children have a built-in ability to learn them, and to incorporate
them appropriately into their own code of conduct. Aspies never pick up on these things, so as adults, they still do
not have the ability to recognize these nonverbal signals. Of course, this can cause confusion when NTs and aspies communicate.
The NT may send signals that he is not interested in a particular topic, or that he has tired of talking to the other person
completely. The aspie will miss these signals, and the NT typically grows more and more angry as his signals, from his
perspective (and at an unconscious level), are ignored.
The aspie, whether a child or an adult, is not usually interested in the social hierarchy of the group. Popularity,
"coolness," jealousy, image, office politics... all of these are things that do not concern aspies. Unfortunately, this
often means that they end up at the bottom of the hierarchy. In school, aspie kids are often picked on by all of the
other kids, who seek to improve their own prestige by abusing others. That need to improve one's image, even if by making
others look bad, is not something that aspies can really comprehend. They just do what they want to do, without any
worry about whether something is "cool" or not.
Many of the medical texts suggest that people with AS prefer to be alone. That's not really accurate, though. While
most aspies will need to have some "alone" time each day, they don't usually want to remain solitary all of the time.
Most aspies do want to be social and to interact with others, but they often have long histories of disastrous results with
regard to interpersonal communications, for the reasons described above. It is not so hard to see why many aspies shy
away from others.
Aspies tend to be well above average in intelligence, and language skills far in excess of the norm for the age group
are common. Aspie children often read and write several grade levels higher than their like-aged peers. Aspies
of all ages often have unusually expansive working vocabularies, and it is often said that aspie kids talk like adults.
One of the most interesting aspects of the aspie personality is the "perseveration," or the special interest. Aspies
tend to be rather deeply engrossed in one specific topic, and that one area of interest dominates the mind and free time.
This is not to say that they cannot think of anything else, but they show a sense of zeal and enthusiasm for the special interest
that most NTs will never experience. The topics of interest can be quite common, like computers or car repair, or they
can be rather bizarre. Anything from dinosaurs to fleas to mimeograph machines can be the focus. The person will
typically seek to gather and absorb as much information on the special interest as he can find... from libraries, the internet,
experts in the field, and through direct experience where possible. Sometimes the special interest persists for years;
in other cases, it may only last for a few weeks, at which time a new interest will take over.
Aspies tend to be very responsive to stimulus. Loud noises, bright lights, powerful odors, or unexpected touch
can overload an aspie's mind. Loud noises of short duration produce an effect in the mind that resembles that of scratching
a chalkboard. Certain persistent noises, especially loud or "busy" ones (like multiple voices), can be very tiring and
stressful. Visually busy or bright environments can have a similar effect. Aspies tend to prefer quiet environments
with subdued lighting. Many of them carry earplugs and sunglasses to help them deal with unexpected sensory overloads.
The aspie mind by nature abhors inaccuracy and imprecision, and dishonesty and deception do not come naturally.
Aspies are by nature loyal, accepting of difference, and have a talent for being able to accurately assess themselves and
others. Their unique position outside of the norm allows them to see things as few can.
By nature, people with AS are innovators; their inability to recognize the unwritten rules means that they live in a
world largely without preset limits... so ideas and concepts that may never have existed without such a perspective are born.
People like Ludwig von Beethoven, Thomas Jefferson, Albert Einstein, and Bill Gates were (or are) probably aspies. Arrogant,
eccentric, strange, intelligent, perceptive, genius. They're all words that have been used to describe the people above,
as well as many or most known aspies.
Medical texts tend to describe AS in terms of impairment, disability, and the problems it causes. They're all written
from the perspective that normal is good and unusual is bad; that all deviations from the usual are signs of dysfunction and
must eventually be cured. They fail to see the beauty of AS, and of being different. Many aspies, including the
author of this article, like their AS... it is more than just a condition in a medical book. It's a part of who they
are, and what thy are. As this article's author says, "I would not be 'me' if the AS were not there. I really
do see it as a thing of beauty."
Thanks, Mom: What My Mother Did Right © Frank Klein
I would like to take this opportunity to express my thankfulness to my mother, who did not seek intervention for my autistic
traits. At the time I was a toddler, which was in the early to mid 1970s, autism was not thought of as a spectrum disorder.
It was synonymous, for the most part, with what we now call "low-functioning" autism. Certainly I did not present as
low-functioning, so I never would have been flagged as having been autistic. The condition we now call high-functioning
autism did not gain any real notoriety in the English-speaking world until after the publication of Lorna Wing's 1987
review of Hans Asperger's work. The debate as to whether Kanner's autism and Asperger's autistic psychopathy, which
Wing dubbed "Asperger's Syndrome," were completely separate or related conditions led directly to the concept of the "autistic
spectrum," which is now considered to be factual by most. As far as de facto autistics go, I am very much on the "mild"
end of the spectrum. Still, as a child, my behaviors were pretty obviously autistic.
I do not blame my mother a bit for not making the connection between my unusual childhood behaviors and autism.
Even most doctors at that time knew little, if anything, about autism, so I would not expect a young, first-time mother to
know what her physicians probably did not. She knew from the beginning that I was unusual, but as long as I seemed to
be thriving, she was not too worried. As I learned more about my first three years, as a result of pestilent questioning,
I realized that my first signs of autism went right to my date of birth. I could not suck from a nipple (of any kind)
and coordinate the swallowing movement. I lost nearly a pound of my premature six pound weight before this was remediated.
At one month of age, which would have been my due date, I learned to suck and swallow. Still, though, things were not
normal.
I learned to turn over early, but it was not a graceful movement so much as a flopping over by flapping my spindly limbs.
Soon I lost that ability and did not regain it until much later. Babbling was limited, and other than fits of screaming
for unknown reasons, I was a quiet baby. I did respond to tickling and such things with a smile, though, and no one
ever thought I was deaf. If anything, my hearing was hypersensitive, and I noticed every little noise, even if others
initially didn't.
Before my first birthday, I began to resist being picked up, and I did not like to be held. I never crawled; I
rolled, right up until I began to walk in the fourteenth month. I still hadn't uttered any words. I continued
to make noises and verbal stims, but no words, until about the twenty-fourth month, at which time I began to speak... in sentences.
Many of them were echolalic, including instant and delayed parroting of TV commercials. As my ability to express myself
grew, I began to do the pronoun reversals, and to call myself by my first name instead of "I." At about that time, I
was first introduced to children my age. I ignored them totally, as if they were not there. I could be "in a room
full of kids and still be totally alone," my mother tells me. I would also spin any object I could get my hands on,
sometimes causing frustration in adults.
Through all of this, there were no worried visits to the doctor, or fears that I was some genetic freak. When I
was about thirty months old, my mother enrolled me in Montessori preschool to try to get me to be a little more social.
The curriculum did not stress group achievement much, but at least I would be exposed to other kids, my mother thought.
I did pretty well there, aside from screaming fits when I was first dropped off.
Years later, I began at the local public elementary school, and I began to experience shutdowns in class. The special-ed
teacher somehow knew what to do, and would come and get me and give me short breaks from class. That problem was solved,
as far as everyone was concerned. It was in about the first grade that I made my first real social overtures toward
other kids without prompting.
At home, I did the toe-walking all the time, and I did all sorts of stim behaviors like hand flapping. I still
preferred to be alone. I would get obsessed with certain subjects, and I would want to talk about nothing else.
I never did that with my peers; I still had little interest in them. Adults, though, would often listen to my precocious
lectures, probably very amused by them. I struck everyone as an amazingly bright little boy, and I suppose that I was.
That goes a long way in having people excuse your bizarre behavior, at least in the early years. My status as a "gifted"
child seemed to be a handy explanation for all of my strange behaviors, including my notable hyperactivity. Certainly,
no one thought that there was anything "wrong;" if anything, something was very right about me. Had I not been
hyperlexic, I am sure that my autistic behaviors would have been much more objectionable. Fortunately for all involved,
I was not self-destructive, and my angry impulses, while obviously present, were well-controlled. I suspect that my
mother's acceptance of my unusual behaviors may have been a significant cause of my nonviolent character. If she had
tried to change me, I may not have exhibited such control.
My mother never pushed me to be social when I did not wish to be, and I am glad she didn't. Some autistic children
(aspies especially) want to have friends, but do not know how to make them. These children should be helped to make
friends, but never should the issue be forced. Some children, like me, did not really care about their peers at all,
and these children should not be forced to socialize against their will. In time, most will begin to desire social contact
in their own way, and forced social interaction will not make that happen any sooner. In fact, it may feel so unpleasant
to the child that he associates unpleasant feelings with social contact, and he will be more asocial in the future. Parents
often think it is "so sad" to see the little boy or girl playing alone in the corner of the yard, but it is not sad at all
if the child is happy that way. I have always preferred solitude, and I am most happy when I am alone. Even now,
as an adult, people think it is "so sad" that I spend so much time in my apartment alone. I do it by choice; it is not
sad... it is just different.
Similarly, I was never forced to make eye contact or to stop stimming (which my mother called 'fidgeting'). My
mother gently suggested that I might want to stop hand-flapping, so that my peers would not give me a hard time, but never
made an issue of it. She never tried to get me to stop rocking; in fact, at one point she bought a rocking chair.
These stims are harmless behaviors that help an autistic child release stress and get back in tune with the world. The
autistic child's experience is a bewildering one, full of motions, lights, noises, and odors, and the sensory input sometimes
gets to be way too much for the child. At these times, an autistic person may stim, pace, or seek a quiet place with
no one around. This is a necessary thing for any autistic person, children included, and by no means should a child
be deprived of his outlets to release stress. Normal people have no idea how stressful it is to be autistic. Things
that you do not notice may cause more stress for your child than an unfinished 1040 on April 14th does for you. Never
underestimate the stress your child experiences in noisy, bright, crowded, or social environments. It can be brutal,
and the tantrums that may result are beyond your child's control. This is what autistics often call a meltdown, which
happens when you have ignored the signs of stress too long. They are there if you look for them: increased covering
of the ears or eyes, increased stimming, increased restlessness or hyperactivity, complaints of upset stomach, increase in
that glazed-eye, "million mile away" look... the signs of impending overload or meltdown are numerous, and each child will
have his own set. Be aware of them, and do not underestimate them.
In retrospect, my early childhood was quite unusual, but I was accepted for the odd child I was. In my case, that
was the best thing for me; I am firmly convinced of that. I began to realize I was different in about the third grade,
but it never bothered me. I was never given the impression that unusual was bad, or that I had a problem. No matter
how well-intentioned a parent may be, taking a child to a doctor to see why he is so "weird" tends to implant the idea that
there is something wrong, something "bad" about the child. I never knew why I was taken to the special ed classroom
to play on the balance beam, but I knew that I was being singled out, and even though it apparently did me some good, I did
not like it, and I wondered what was wrong with me. Imagine how much worse it would have been if I had been taken by
my mother, whom I trusted more than anyone, rather than a teacher. Imagine if I had to stand there listening to her
tell a doctor about how weird and unacceptable I was (which is the message the child gets). Imagine how much more "weird"
I would have felt if I was taken to special classes, or gone to a special school. I am not saying that such things should
never be done; on the contrary, in some cases, such things are vital. All I request is that you be aware of the effect
these things have on self-esteem. Please, don't discuss your child's behavior with the doctor while the child is listening!
As it turned out, at least in terms of academics, special education was not necessary for me, as it is not for a lot
of aspies, and a few high-functioning autistics like me. Sometimes parents overreact and put their kids in all sorts
of programs just because those programs are there, though. They listen to the doctors make wild guesses about prognosis
(and that is all they are-- wild guesses), and they panic about their children's future. Don't panic! This has
to be approached rationally and logically. If the child cannot function in normal classes, then alternate plans must
be made, but don't make use of resources that are not needed just because you can. Doing so can easily prove to be far
more destructive than helpful. An autistic child's self-esteem is going to take a beating in the years to come, no question
about that, so it is imperative that things that will hurt that self-image be avoided if at all possible. Only a very
strong self-image will be adequate protection from the self-esteem clobbering that is to come. You must daily work to
build that self-esteem.
Depression is an ever-present menace in the autistic community, and this must never be forgotten for an instant.
Even if the child does require special education, be sure that he never gets the idea that he is broken or defective.
This means going to what you may consider to be ridiculous extremes to prevent this idea from forming in the child's mind.
Never allow the child to think that "different" is not a good thing. This may even mean prohibiting exposure to certain
relatives that do not understand that autism (including AS) is neurological, and not a sign of bad parenting. Some relatives
may take it upon themselves to "correct" your child's behavior... things like pulling the child's face to theirs and saying,
"Look at people when they talk to you, or else they will not like you," or things like that. If that does happen unexpectedly,
rebuke the relative immediately, in front of the child. Explain to that relative, in private, that parenting is your
job alone, and if that is not something that relative can accept, they will not be allowed exposure anymore. This may
be very tough to do if the relative is one that you have typically been intimidated by, but it is imperative that you do so.
Anything that makes the child feel bad or embarrassed by his behaviors will cut away at his self-esteem. Please
be aware that even when you do all you can to prevent this, the child will begin to notice his differences on his own, and
if you allow anyone to plant the smallest seed of doubt regarding the validity of those behaviors, the child will begin to
think of himself as lesser than his peers. The child's peers, especially in a regular school, will pick on a child
who is different, and this is tremendously damaging, especially for children that want to have friends. This cannot
be prevented fully, and that is why you must do all you can to prevent that which can be prevented. Be sure the school
is aware of the problem of bullying, and be clear that the only acceptable amount of abuse is NONE. You may have to
get rather belligerent with the school to get them to stop the bullying.
Through elementary school, it is reasonable to expect that bullying will be stopped.
It's much harder to prevent in the multi-class middle school environment.
Middle school is the worst. My mother tried to help me here, but she lacked the experience I now have. In
my school district, fighting back was just as unacceptable as attacking someone, and I was taught to respect the rules.
I did, but the other kids did not. As much as you may not want to hear it, your child should be allowed to disregard
the rule against fighting back if he is physically attacked. If your child is attacked, it is a sign that the school
is not doing its job in preventing bullying, so the child that fights back is not the one at fault-- the school is at fault.
If the school suspends your child for legitimately defending himself, use the day off to take him to get some ice cream.
Your child's self-worth is more valuable than some arbitrary rule. The bullying in seventh grade is brutal, and it is
unrelenting. I am not really sure if it is possible to stop all of the abuse in the middle school years, and if you
are at all up to the task, I strongly recommend home schooling from the first year of middle school through the end of the
first year of high school. Those are the most abusive years, by far, and the level of brutality and intentional terrorism
of which middle school-age children are capable is astounding. In my case, this abuse destroyed my self-image, and I
suffered depression that lingered eight years after I graduated from high school.
My mother did the best she could in middle school, but it was not enough, which we both know now by experience.
She told me that if I was attacked or threatened, I should go tell an authority figure. That only made it worse, and
after more complaints to my mother resulting in the same advice, I quit telling her. I suppose she thought that the
problem cleared up, but it didn't. I suffered in silence for years, with only the occasional obvious bruise or food
stain on my clothes giving testament to the abuse of the day. Be sure to tell your child to tell you ALL of the bad
things that were done to him, and be sure he understands that it is OK, and that it is NOT his fault. He may be embarrassed,
and may not want to tell you. Keep in mind that autistic kids are generally stoic, and the actual abuse is probably
a lot worse than you think from hearing the child's reports.
All in all, my mother did a great job of raising a strange kid. Before I knew I was autistic, I used to think she
did a rather mediocre job, but as I have learned about the things parents do to their autistic children, I have become very
appreciative that my mother accepted my weirdness and did not try to make me into a normal child. Too many parents and
professionals try to do this to autistic kids. Take my word for it: your autistic child is not normal, nor will he ever
be. There is no recovery from autism-- the stories you hear about that are not as they appear.
Temple Grandin claimed to be a recovered autistic when she wrote her autobiographical book Emergence: Labeled Autistic,
but in her next book, Thinking in Pictures, published nine years later, she simply refers to herself as autistic. She
has improved in her ability to function, but she realized that she was still autistic, and that she always would be.
Recovery from autism is a wishful-thinking fantasy borne of denial. That does not mean that there is no hope for a bright
future! If your child is allowed to grow up appreciating himself, his differences, and is given the tools to live in
this strange world, WITHOUT trying to cure or remove the autism (which won't cure the autism, but will instead promote self-hatred),
he can grow up and do things the doctor said would be impossible. You may be really surprised at how much is possible
if the child never gets the idea that he "can't." Can't is a horrible word, perhaps one of the most disabling words
in the English language. Don't concentrate on what your child cannot do; concentrate on what he can do, and build on
that every chance you get. As you do, "can't" will get smaller and smaller with the passing of each day.
* * * * * * * * * * * * * * * * * * * * Here's a song by Jessadriel Darkmountain (to the tune of "My Favorite Things" from the Sound of Music):
My Unfavorite Things Bright clashing colors, machines that keep beeping, Phones and alarm clocks that ring when I'm sleeping, Getting told off when I'm scattered or late, These are a few of the things that I hate. Tags in my clothing and seams in my stocking, Those who say "teasing" when really it's "mocking", Fluorescent flicker and noises that grate: These are a few of the things that I hate. Too many people in too small a room, Vile reeking chemicals mis-named "perfume", Voices too loud and weird food on my plate, These are a few of the things that I hate. Being expected to follow the fashions, Not being able to share my true passions, People who bitch when I perseverate, These are a few of the things that I hate. Indirect questions and vague explanations, Having to smile when I'm losing my patience, Looks of disdain if I stim while I wait, These are a few of the things that I hate. When my hands flap, when my voice fails, When I'm meltdown-mad, I simply remember - I could be NT (ack!) - And then I don't feel so bad! © 2/10/04 Jessadriel Darkmountain (Per Jessadriel: "Feel free to send it around wherever you wish, as long as my name stays on it.") * * * * * * * * * * * * * * * * * * * * * * * * * * * * Asperger Syndrome and Mom's Secret Weapon (A Mother's Day Reflection) By Dan Coulter This is for all the moms of children with Asperger Syndrome. Want to be more effective in helping your child? Want to give him the best possible training to deal with AS and succeed? Then you need to access a secret weapon. You. Your immediate reaction may be, "Yeah, right! I'm already doing everything I can. More than I can! In fact, I'm so stressed that just the thought of doing more threatens to shut me down." But I bet you're overlooking something. Over the years since our son was diagnosed, I've talked with a lot of mothers of kids with AS. And Ive watched my wife, who, like most AS moms, has taken on the main burden of researching AS and dealing with schools, doctors and on and on and on. A common thread that ties many of these moms together is frustration. Look at AS online discussion boards and see how often moms talk about failing and being discouraged day after day. But how many are truly failing? I think these moms care so passionately about their kids and want them to succeed so badly that they don't give themselves enough credit for what they're accomplishing. If you have a goal for your child and you don't reach that goal, do you give yourself credit for the progress you helped your child make toward that goal? If you try your hardest to reach the top of a mountain and you make it halfway up, did you fail? YOU MADE IT HALFWAY UP A MOUNTAIN! And maybe you established a basecamp to help you reach the top in the future. Like many AS moms I've met, my wife easily qualifies for sainthood. Over the years, she's worked closely with our son, Drew, and with teachers and principals and psychologists and support groups and more. Drew is now living three hours away from us in college. He's making good grades and has friends. And my wife still frets over the messy state of his dorm room and worries she should have gotten him more "executive function" training. My point is that no matter how much or how little progress you make, it's easy to overlook that progress and focus on falling short of perfection. My wife told me about hearing a psychologist warn, "Don't 'should' on yourself." That's always obsessing: "I should have done this," or If I'd only done that." Focusing on failure is depressing. It robs you of energy and generates stress. On the other hand, don't you feel good when you succeed? Don't you feel energized and optimistic? Don't you have better ideas and relate better to people? That's the secret weapon. And you can legitimately tap into it if you just break down your objectives and goals into steps and give yourself credit for every step you and your child make toward success. I've seen the results with kids. Praise their progress and they work harder to reach a goal. Criticize them and they tend to shut down and avoid even trying. The same thing works for us. If you focus on feeling good about progress instead of criticizing yourself for failure, your secret weapon kicks in. Don't get me wrong. I'm not saying set low goals and be happy with mediocrity. I'm saying that giving yourself legitimate credit can put you into a positive frame of mind that gives you energy and better ideas And if you have a positive attitude and energy when "Plan A" falls short you're more likely to try "Plan B" -- and "Plan C" and "Plan D." My son has already exceeded expectations so many times I can't count them. In big ways and in small ways. And if I've played a significant part, it's because my wife helped me see the role I needed to play. Them wives are heaven-sent. So set your goals high. Help your child find the best in himself. Help her find the best in others. Don't settle for less than your best. But you may be the only person in a position to truly appreciate all you're doing for your child. Those on the outside looking in cannot see how truly challenging Aspergers is. So step back occasionally. Look at the progress you've made in the face of pretty stiff obstacles. And give yourself a pat on the back. I'm betting you deserve a lot more than that -- and I hope you see your reward in the eyes of your child every Mother's Day for the rest of your life. Dan Coulter and his wife, Julie, produce videos to help people with Asperger Syndrome. You can find more articles on their website at http://www.coultervideo.com. Copyright 2004 Dan Coulter * * * * * * * * * * * * * * * * * * * * * * * * * * * * A Mothers Journey Author Unknown The young mother set her foot on the path of life. Is this the long way? She asked. And the guide said, Yes, and the way is hard. You will be old before you reach the end of it, however, the end will be better than the beginning. But, the young mother was happy, and she wouldnt believe that anything could be better than these years. So she played with the children, she fed them, bathed them, taught them how to tie their shoes, ride a bike, reminded them to feed the dog, do their homework and brush their teeth. The sun shone on them, and the young mother cried, Nothing will be lovelier than this. Then the nights came, and the storms, and the path was sometimes dark, and the children shook with fear and cold, the mother drew them close and covered them with her arms. The children said, Mother, we are not afraid, for you are near, and no harm can come to us. The morning came, and there was a hill ahead, the children climbed and grew weary, the mother also grew weary. But at all times she said to the children, A little patience and we will be there. So the children climbed, and as they climbed they learned to weather the storms. With this, she gave them strength to face the world. Year after year, she showed them compassion, understanding, and hope, but most of all she gave them unconditional love. When they reached the top they said, Mother, we wouldn't have done it without you. The days went on, the weeks, the months and the years, the mother grew old and she became little and bent. But, her children were tall and strong; and walked with courage. The mother, when she lay down at night, looked up at the stars and said, This is a better day than the last, for my children have learned so much and are now passing these traits on to their children. When the way became rough for her, they lifted her, and gave her strength, just as she had given them hers. One day they came to a hill, beyond the hill they could see a shining road with golden gates flung wide. And the mother said, I have reached the end of my journey and now I know the end is truly better than the beginning. My children and grandchildren can walk with dignity and pride, with their heads held high. The children said, You will always walk with us, Mother, even when you have gone through the gates. They stood and watched her as she went on alone, and the gates closed after her. They said, We cannot see her, but she is with us still. A mother like ours is more than a memory. She is a living presence. Your Mother is always with you. She is the whisper of the leaves as you walk down the street. She is the smell of certain foods you remember. She is the flowers you pick. She is the smell of that special perfume she wore. She is the cool hand on your brow when youre not feeling well. She is your breath in the air on a cold winters day. She is the sound of the rain that lulls you to sleep. She is the colors of the rainbow. She is Christmas morning. Your Mother lives inside your laughter, and she is crystallized in every teardrop. A mother shows every emotion: happiness, sadness, fear, jealousy, love, hate, anger, helplessness, excitement, joy, sorrow, and all the while, hoping and praying you will only know the good feelings in life. Shes the place you came from, your first home, she's the map you follow with every step you take. She is the one you run to when you are scared. Her arms are always open to hold you and to console you. * * * * * * * * * * * * * * * * * * * * * * * * * * * *
A Broken
Spirit ©Elaine
Flasher February
10, 2004 A broken spirit is hard to see, Sometimes it presents with glee. Hiding for it has no place to go, Only struggling within the soul. A broken spirit cannot see, The torment brought to thee. If it does fear will set in, A flaming sun will not bring. The light to see another day, All reality will fade away. The body numbs from the pain, Not knowing how to feel again. * * * * * * * * * * * *
Mothers who get something more
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through? They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child. Where are the parents? They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of there own.
Where are the parents? They are trying to spend time with their non-disabled children as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves. Where are the parents? They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families. They are busy, trying to survive. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Where Are the Parents? Adapted from a paper By Sue Stuyvesant -The author of this
adapted version wishes to remain anonymous.
Where Are the Parents? They are on the phone to doctors and hospitals, fighting
with insurance companies, wading through the
red tape in order that their child's medical
needs can be properly addressed.
They are buried under a mountain of paperwork and medical
bills, trying to make sense of a system that
seems designed to confuse and intimidate all
but the very savvy. They are weary because
everyone says they cannot help them, and oh,
Autism is excluded from your health insurance policy
because it is a psychological problem, not a physiological problem.
Where are the parents?
They are on the phone to school districts, teachers, special
education administrators, trying to get what
is just for their children. They are buried under a mountain of regulations and laws
that purport to help them, but just serve to confuse them.
They are trying to become school house lawyers
just to get what the law already says they are
their rights. They try to explain
why it is not acceptable for Johnny or Mary to
sit in the chair without stimulation for four hours a day,
or why circle time is just not something that a child with autism
can understand.
Where are the parents?
They are at home, diapering their 6 year old son.
They are chasing their child, who does not understand
the need to eat, or who is allergic to food,
because of the exorbitant behavior the allergies
to food bring on. They spend hours trying
to convince a child to eat that has no
interest. They are administering medications, hoping and wondering if there is anything that science will do to help.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital
emergency rooms, waiting for tests results to
come back and wondering: is this the time when
my child doesn't pull through?
It seems that Johnny ran out into the road because he did
not know any better.
Where are the parents?
They are incapacitated, after the sleeping aid the doctor
prescribed for Johnny had the opposite effect,
and caused the child to stay up for 10 strait
days. Somehow, they were not able to come to
the meeting.
Where are the parents?
They are home reading books about behaviorism and psychology,
hoping to learn enough to make some difference
in their child's lives, because the professionals
have told them that discreet trial or 40 hours
a week of intense behavioral intervention is not
appropriate for a child. "The child needs to play" they say but the child does not know how to play. "The child needs to socialize" they say, but the child does not know how to play.
Where are the parents?
They are sleeping in shifts because their child won't sleep
more than 2 or 3 hours a night, and must constantly
be watched, lest he do himself, or another member
of the family, harm. They have not slept
in years. They are sitting at home with
their child because family and friends are either
too intimidated or too unwilling to help with child
care and the state agencies that are designed to help are suffering
cut backs of there own.
Where are the parents?
They are trying to spend time with their non-disabled children,
as they try to make up for the extra time and
effort that is critical to keeping their disabled
child alive. They are struggling to keep
a marriage together, because adversity does not
always bring you closer. They are working
2 and sometime 3 jobs in order to keep up with
the extra expenses. They cannot make
the meeting because it was only acceptable
to the professionals to hold it during the day, when
the parent has to be at work. There is no vacation left, or
sick days. And sometimes they are a single parent struggling to
do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service
to helping those in need, as long as it doesn't
cost them anything. They are trying to patch
their broken dreams together so that
they might have some sort of normal life for their children
and their families.
* * * * * * * * * * * * * * * * * * * * * * *
* * * * * * * * * * * * *
This piece has generated both positive and
negative reactions by many people
on my support lists. Some people find it offensive and others can identify with it.
Welcome To Holland
©Emily Perl Kingsley (1987). All rights reserved.
I am often asked to describe the experience of raising a
child with a disability - to try to help people
who have not shared that unique experience to
understand it, to imagine how it would feel.
It's like this......
When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of
guide books and make your wonderful plans. The
Coliseum. The Michelangelo
David. The gondolas in Venice. You may learn some handy
phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours
later, the plane lands. The stewardess comes
in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed
up for Italy! I'm supposed to be in Italy. All
my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a
horrible, disgusting, filthy place, full of pestilence,
famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must
learn a whole new language. And you will meet
a whole new group of people you would never have
met.
It's just a different place. It's slower-paced than Italy,
less flashy than Italy. But after you've been
there for a while and you catch your breath,
you look around.... and you begin to notice that
Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and
they're all bragging about what a wonderful time
they had there. And for the rest of your life,
you will say "Yes, that's where I was supposed
to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * WELCOME TO BEIRUT
© Susan F. Rzucidlo (Beginner's Guide to Autism) "I am often asked to describe the experience of raising
a child with autism-to try and help people who
have not shared in that unique experience to
understand it, to imagine how it would feel.
It's like this.."
There you are, happy in your life, one or two little ones
at your feet. Life is complete and good. One
of the children is a little different than the
other but of course, he's like your in-laws,
and you did marry into the family. It can't be all that
bad. One day someone comes up from behind you and throws
a black bag over your head. They start kicking you in the
stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!
There you are in Beirut, dropped in the middle of a war.
You don't know the language and you don't know
what is going on. Bombs are dropping "Life long
diagnosis" and "Neurologically impaired". Bullets
whiz by "refrigerator mother" " A good smack is
all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.
Unfortunately, there is no one to send your resignation
to. You've done everything right in your life,
well you tried, well, you weren't caught too
often. Hey! you've never even heard of autism before You
look around and everything looks the same, but different. Your
family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.
Just as you start to get the first one figured out ( early
intervention) they drop you into a larger more
complex one (school). Never to be out done, there
is always the medical intervention maze. That
one is almost never completed. There is always
some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and
odd sense of humor. Every so often you get hit by a bullet
or bomb not enough to kill you, only enough to
leave a gaping wound.
Your child regresses for no apparent reason, and it feels
like a kick in the stomach. Some bully makes
fun of your kid and your heart aches. You're
excluded from activities and functions because of
your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.
And yet, hope springs eternal.
Yes there is hope. There ARE new medications. There IS research
going on. There are interventions that help.
Thank God for all those who fought so hard before
you came along. Your child will make progress.
When he speaks for the first time, maybe not until he is 8
yrs old, your heart will soar. You will know that you have experienced
a miracle and you will rejoice. The smallest improvement will
look like a huge leap to you. You will marvel at typical development
and realize how amazing it is. You will know sorrow like
few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be.
There will be a few nurses and doctors who treat your child
with respect and who will show you concern and
love like few others. Knowing eyes will meet
yours in restaurants and malls, they'll understand,
they are living through similar times. For those people you
will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.
But, there are lulls in wars, times when the bullets aren't
flying and bombs aren't dropping. Flowers are
seen and picked. Life long friendships are forged.
You share and odd kinship with people from all
walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal?
* * * * * * * * * * * * * * * * * * * * * * *
* * * * * * * * * * * * *
"Like Me" © Emily Perl Kingsley I went to my dad and said to him, He runs in a funnyish jerkyish way He studies all day in a separate class His face looks kind of different from mine, And my father said, "Son, I want you to think Well I guess, I admitted, I've looked at his face; And when we're in Music, he sure loves to sing, And I know in the lunchroom he has lots of fun; And he's always so friendly, he always says hi, And his folks really love him. I saw them at school, So I said to my dad, Hey, you know that new kid? *********************************************************
Before I Go To Sleep (for Dhylan) ©Sally Meyer ~ 1999 Dear Mommy, don't you cry now, and Daddy don't you weep I want to whisper in your ear, before I go to sleep. I know that when I came here, I seemed perfect in every way. And, you were so proud Daddy when you held me on that day. Mommy, when you kissed me, and wrapped me up so tight, I felt as if I belonged right here, and everything was right. When things got really scary, and I began to slip away I saw your face dear Mommy, as you knelt by my bed to pray. And, Daddy I always notice how you wipe away a tear, as you watch the other little boys, run and laugh and cheer. I may not be able to tell you how much I love you so, or even show you how I feel and what I really know. But when you hold me, Mommy, at night when all is still. I hear your dear heart beating and I know that all is well. And Daddy when you take me to the park to run and play, I know that you still love me, though the words I cannot say. So Daddy don't you cry now and Mommy don't you weep I want to tell you something before I go to sleep. I may be sort of different and you may not understand, that I know I am not the child that you and Daddy planned. But I love you both so very much and I know you love me too, and one day when this life is done, you will feel my love for you. I know the future is unknown and you'll always have to be the people who love and listen, and take good care of me. The road we travel is rough sometimes and you cry a lot of tears. But, one day we will turn and laugh, as we look back o'er the years. So Mommy, dont you cry now, and Daddy please don't weep I want to say . . . I love you. Before I go to sleep. I Would Still Choose You (for Dhylan) People have asked me what I would do I think of the days when you drive me to tears, You took my best marker and drew on the wall This morning when the bus came, you would All night you were up, afraid of the dark, At dinner you ate one chip and some fries In the bathtub tonight you took soap and shampoo But................................................................ When I look at you sleeping. I think and I muse * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * In Twenty Years (for Dhylan) I went to the grocery store this weekend. It could have been the innocence in his eyes, I smiled at him, stopped to say hello. His mother turned to him and grabbing his arm, I smiled again, trying to show him, he was okay. I turned with my own man child, sitting in the cart. I wonder if the years will cause me to become so tired, so careworn * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * In the classroom, the children gathered in a circle, * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Keeping Things in Perspective I hear a mother complain about her child "talking back to her" and think... I wish my child could talk. I
see two brothers playing tag at the park and think... I wish my child could do that. These poems were written
by David Spicer. He received the diagnosis of High Functioning Autism/Asperger Syndrome at the age of 46.
Autism and Holiday Gatherings ~ Viki Gayhardt
Dear Family and Friends:
I understand that we will be visiting each other for the holidays
this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more
successful.
As you probably know, I am challenged by a hidden disability called
autism or what some people refer to as a pervasive developmental disorder (PDD).
Autism/PDD is a neurodevelopmental disorder which makes it hard for
me to understand the environment around me. I have barriers in my brain that you can't see but which make it difficult for
me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have
to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities:
some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic),
or have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and
make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving
freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you
would if you landed on an alien planet and didn't understand how the inhabitants communicated. This is why I need to have
things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes,
then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can't understand what you say
because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.
You might think I am ignoring you--I am not. Rather, I am hearing everything and not knowing what is most important to respond
to.
Holidays are exceptionally hard because there are so many different
people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but
for me, it's very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It
would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaved or
that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy
and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal
for me--go on without me and my parents will handle the situation the best way they know.
Eating in general is hard for me. If you understand that autism is
a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating: sight, smell,
taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism
have trouble with. I am not being picky -- I literally cannot eat certain food as my sensory system and/or oral motor coordination
are impaired.
Don't be disappointed if mommy hasn't dressed me in starch and bows.
It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I
will just be miserable! Temple Grandin, a very smart adult with autism, has taught people that when she had to wear stiff
petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.
When I go to someone else's house, I may appear bossy and controlling.
In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!)
Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to
change the way you are doing things -- just please be patient with me and understanding of how I have to cope...mom and dad
have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help
themselves feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers
in my face, flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what
I have to do for my brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking
in an activity. The grown ups call this "perseverating" which is kind of like self-regulation or stimming. I do this only
because I have found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable
place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm
down.
Please be respectful to my mom and dad if they let me "stim" for
a while as they know me best and what helps to calm me. Remember that my mom and dad have to watch me much more closely than
the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you
tippies (what we autistics fondly call you neurotypical folk!) It hurts my parents' feelings to be criticized for being over-protective
or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents
are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average
household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies but it's very hard
work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that
I don't possess the neurological system that is required to follow tippy rules.
I am a unique person--an interesting person. I will find my place
at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes!
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It's Spelled Wrong!
I’M STILL HERE LYRICS From the movie "Treasure Planet" I am a question
to the world, You don't know me, 'Cause I'm not here. They can’t
tell me who to be. |
