Letters from parents and professionals (mostly to me, but also some selections from the Internet)

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Dear Richard,

My son was also diagnosed with Autism. But, it was of no help from the doctor's. When my son was first born I noticed he didn't respond to or look towards my voice. He just wanted to be left alone. He also would scream for hours, and the doctor's said it was probably his formula making him colic. We put that child on a couple different formulas and he only seemed angrier. By the time he was 2 he still wasn't talking or even acknowledging his family. Finally a friend of ours, who works with special children, adviced us to try speech therapy. Well, when the case manager came to our home she immediately knew something was very different about *. And suggested we make an appointment for a Neurodevelopmental specialist(s). It was then that he was diagnosed with Autism. After 2 years of asking doctors "Is he deaf? Does he have sight problems?"

Now my son is doing much better. When I read about Autism, I grabbed my son, screaming and fighting, and held him. i decided no matter what the doctors say, the therapist do, I will break his shell. And he's now 2y 7ms. says about 15 words without prompting, and know a few simple commands. I still worry because of his overly aggressive behavior, but, I just keeping fighting for my son. My Heart Goes Out To You And Your Family. Stay strong.

Good afternoon. My name is * and I am a psychology major at Purdue University in West Lafayette, IN. I have been an ABA therapist for 2 years now, although to date I have only worked with 2 families. The reason I am writing is to simply say "Wow!" I have never seen such a dedicated and comprehensive source of information regarding ABA, available resources, and basically anything else anyone would ever want to know about autism/PDD. I came across your website because I am working on a project that is supposed to show us as future professionals who work with parents how prevelant and attainable information is for parents. This involves going to bookstores, public libraries, the internet, etc., in order to see how much information in general is out there. We also made up 2 specific questions a parent might ask in which we had to go and find answers to. My questions asked, "What type of private and/or government aid is available for parents wanting to enroll their child diagnosed with autism into an early intervention program?" and "Where can I find a support group that caters to the parents of a child with special needs, especially autism?" By sheer luck I managed to come across your website relatively early in my search for answers to these questions. Based on the level of information I had seen in books and on the internet up until I saw your site, I never would have guessed that I would be able to find such useful and comprehensive answers to both of my questions in one location. In other words, thank you for making this assignment an easy one.

There is one other aspect of this assignment that was included in order to make us aware of the problem. We were suppose to see how many and what types of resources were available "out there" that were designed specifically for parents in a minority group. To give you an idea of the amount, let me just say that at the West Lafayette Public Library, I found 1 book in all of the parenting section of the library (dewey decimal 649's). With that in mind, if you ever come across any of that type of information, I have a feeling you would be helping many people by posting it.

Well I'm already late for class, so I'll just end by saying that it is nice to know that there is someone who believes strongly in ABA and has the dedication to get information out so that not everyone will have to go through as many trials and disappointments as you did to get to where you are today. On behalf of many families, Thank You.

Hello,

My name is *. I Love, Love, Love your website!!! I am in the process of starting a home based ABA Program for my son * (age 3years,4months) who has ASD/PDD-NOS

I have very much to learn. Your website has consolidated so much information and saved me so much time. Thank you. Thank you. Thank you.

Hello Richard,

I am the mother of a very handsome, happy, energetic little boy with autism and probably some degree of MR as well. He has been in a special ed preschool which has normally developing children as well for the past 3 years. Next month is time for all his reevaluations and a new IEP. I know what we need for him as well as us, his family, but have absolutely no idea as to how to start to try to get it for him. His name is *, after his great grandfather.

I've been doing a great deal of research on the Internet, on current teaching methods and I keep running into case after case of success with ABA or DTT. I mentioned this casually to one of his teachers, who has been very helpful up to this point, and she flat-out told me that there's no way the school is going to pay for ABA, that they didn't have the money. Needless to say I was devastated.

I've now been to a couple of STEP meetings, gotten a little familiar with all those vast laws, regulations, etc., and I've decided that this answer is unacceptable. I truly believe that this kind of training is going to make the difference between a hopeless, institutional, nonproductive and sad existence, or one where he can function within the family, enjoy at least some degree of independence, and be able to by both productive and happy.

At present, his behavior is completely out of control. He has many negative behaviors which I've tried everything I know to try to eliminate, and he will do them over and over and over with absolutely no regard to anything I try to do. Some of these include: hitting, biting, spitting, pinching, tantrums, doing aggressive things when he doesn't get his way, perseverating on many behaviors ranging from the mild, ( keep going to the 'fridge" ) to playing in the sink, to keep getting different spoons and forks out for the same meal, to the more severe, hitting himself in the head, smacking his sister every time he passes her, hitting me when I tell him not to do something. It also seems like his chief goal in life is to make as much mess as possible for every task, every day. He still doesn't wipe himself well or consistently, brush his teeth, take a bath by himself. But he has started going into the bathroom and stripping his clothes and playing in the water several times a day. Needless to say, it's hard to get anything done when he is at home.

I'm pretty sure you've heard all these things before, but I need help SO badly. I don't know where to start. The director of his school says they are going to be starting up a DTT program soon and that * is one of the kids they think will benefit.

That doesn't solve my problem though, because he will be leaving his school this summer, and starting regular kindergarten in August. That's only about 6 months away. Also, school is only a small part of his life and educational experience. I want him to have a picture schedule and all the materials, as well as someone who has experience in ABA to come into my house from 3pm to 9pm, five days a week. I need them to come in and implement his therapy, work with him until he's got it down, ( All inclusive ), and work with myself, my husband, and my 15yr old daughter to teach us how to accomplish and adapt his schedule.

I guess it may sound like I expect too much, but I truly believe this is the only possible workable solution. Otherwise, I think his little life is going to be a total waste, and I'm not willing to accept that tragedy.

What I need from you, if you are willing, is advice on where to start, and what steps to take after that. To begin with, I need to know how to get them to let me include home goals as part of his IEP, and implement a PECS schedule.

Also, and I'm extremely embarrassed to ask, but our printer was melted last April in our house fire. I'm lucky to still have a computer. Anyway, I really really would like to have hard copies of your pages, and anything else you think might be useful in my endeavors. I know this is asking a lot, but I'm doing it for my son, who can't do for himself. I won't give you a mailing address, unless you tell me you are willing to do this. Thank you for you time and your great website. I hope to hear from you soon.

Regards,

I am new to the illness Asper Syndrome. My son is 11 years old and he is an Asperger Syndrome Child. He has been diagnosed with ADHD, Bi POlar and Sensory Integration Deficit. He is on heavy meds which the combination do not seem to be helping. From what research I have done about Asperger, it fits him completely. IT describes my child as if someone has been living with us. Yes, I feel he is also ADHD, and he is extremely depressed and cannot seem to shake it. We live in Florida, Pasco County. And it is here I feel alone as other mothers. The education in this area is a joke by all standards. He has an IEP, which they do not follow well. Asking for the schools assistance in testing him has fallen on deaf ears. Because I fight for his education and treatment it has put me at odds with the school and school board. Heaven's help the educated mother. As far as respite programs, camps that know how to deal with this child is rare. We have one program in this tri county area and it is booked three years in advance. The cost is so prohibitive it is not even funny. $250 a week. For a single mom that is a second mortgage. lol. We have one treatment center called the Harbor and they are truly a meat market. There primary focus is to collect the insurance money. IF they happen to help you it's a miracle. I have been with them for six years and I feel like most mom's know. I am tired, beaten, and I really don't have the energy or drive to push on for help. How can I obtain assistance here in my area to push the education system to get him the education he deserves and needs. He is in fifth grade and hasn't done a lick of homework in three years. To find a doctor that will treat him with the insurance that I have and get him tested and give him the official diagnosis of Asperger syndrome. Someone who can find the right combination of medication and treatment. Someone who will also treat the family as that and not idiots.

Help....

From Babycenter.com

Hi, I too very highly recommend ABA based on our experience. We had a home program for our daughter for about 10 months after she was diagnosed with autism at age 2. She just blossomed! Basically, she outgrew the need for that type of intervention because she did so well. Her language went from severely delayed to being at age-level. Her cognitive skills went from being unmeasurable (because she was so difficult and wouldn't do any task for the evaluators) to being above age level. But really, most importantly, she became happy and pleasant to be around. She still has autistic traits, and we are struggling with how to treat her remaining issues, but we've come so far. A friend just visited that last saw Julia at age 2 and couldn't even believe she was the same kid. I'll tell you why I think it's a great method - it's 1:1 and tailored to your kid. I think someone who isn't engaging with people and whose attention you can't get and keep absolutely needs 1:1 structured intervention. I can't even imagine how Julia would've been served by any type of school setting back then, and I see kids at her school now (she is now in an autism class, though moving to a regular preschool this month) who are just lost and I believe need an ABA program. I know very little about VB, though some parents I know are very gung-ho on it. Good luck!

Happy New Year, I found your site today, looking for info on continuing my "formal "education,(graduate) in ABA studies. I am also mom to 4 1/2 year old * who has autism. Thanks so much for all your hard work in creating a spectacular site. I will frequent it, and am thankful to find a site that is trustworthy.There is so much trash out there, packaged as "truth" regarding autism, and although we have been on the "battlefield "since * was born, I still marvel at what people actually believe to be true about kids on the spectrum. Thanks again, God bless.

Dear Richard, Jennifer, and Alexander,

I have known about your website for some time. I often reference it whenever someone asks me "What is ABA and should I look into for my autistic child?" but not until tonight did I sit down and read through all of the sections. My husband and I were laughing (and crying) at your description "Does he really need help". I had never heard autism described so accurately before. And this line: "We judge even young children by the qualities we value in other adults, which are not always the qualities a child needs to be a competent child." completely summed up our experience with our child, *. He gets along great with adults and adults perceive him as an amazing, precocious child and are always amazed when we tell them that he is autistic. "But how can that be?", they ask. The answer lies in that one line. He doesn't act like a child, he acts like an adult.

I was absolutely appalled at the difficulties you had with your school district. What an awful thing for all of you to have had to endure. We were (and are) incredibly lucky and blessed. * was diagnosed with ASD when he was 20 months old. He began 4 hours of ABA therapy through the Eden Institute (we live in New Jersey) immediately and worked up to 17 hours a week by the time he was 3. Our school district put up no resistence when we asked that he be send out of district and to our utter astonishment and extreme joy, was accepted into the Douglass Developmental Disabilities Center in September of this year. They are an amazing and dedicated group of professionals. When he was diagnosed, he tested in the 6-8 month old range in all areas except gross motor (he has always been very physical). Today, he tests at age level for most of his skills and is slowly learning that his peers are not his enemies.

Thank you again for putting together such an amazing resource for parents such as ourselves. You have done a great service for the autism community.

Sincerely,

I just discovered your website as a link from the Yale Child Center, and I wanted to thank you for putting together such a useful web site. I am father of a boy (*) who is nearly 3 years old and he has been diagnosed with PDD-NOS, and we are embarking on a treatment and therapy program. Fortunately we are able to do a lot of this privately, but based on your letter to the Brookline School Committee, I can sense the incredible frustration you must have felt. Although we are at the start of our process we our beginning to feel a similar concern about relying on the intervention services provided by the local Birth to Three organization.

Although we have made a lot of progress over the last 6 months I still found some new resources in your website, and rediscovered some other useful places that I had seen but not retained or bookmarked.

Many thanks again for providing such a service to parents everywhere, and I hope your son continues to prosper.

I love the succinct nature of your e-mail. No frills, very informative. I e-mailed the two listed potential employers you offered, but wanted to ask you some things directly. I am a Lovaas trained (master's) individual who completed all doctoral work in behavior analysis (all but dissertation on young autistic identical twins) and I am interested in beginning a consulting business to establish in-home programs for families. I did this at UCLA and at the University of Nevada at Reno, but at outrageous prices. Autism is my first love and I'd like to make a living at it without killing families financially. Do you have any suggestions/ideas? I would appreciate your comments and feedback. Thank you,

Richard

I just wanted to say thank you for your help & advice my name is * and i wrote you a few months ago regarding moving from n.c. to sacramento ca. to help my daughter * well i just wanted you to know that i did exactly that and she has just completed her third day in an in home aba program and i cant tell you how blessed we feel sabrina is doing GREAT! she is catching on so fast that they have started working on quiet,sit and my turn your turn the best part is * actually gets the concepts and is having sucess rates 50-80% after only 3 days! her ssb has decreased (when no demands) as well as her attention seems much better. when we recieved * diagnosis in june the doctor said your daughter is autistic/retarded that was in n.c. the attitude here is so much different as well as the quality of all the proffesionals that are involved in our battle.

Believe it or not this was going to be a short thank you note! I know in my heart that your web site is what pointed us in the right direction immediatly after we recieved the diagnosis i was fortunate to run across your site and my wife and i dropped out of our lives and implemented a very rough version of an aba program that was in july and now that she is in a professional program we know what a difference that time made i can only pray for those that are less fortunate knowing how many people recieve bad information or just give up without a fight. I hope all is well with your family and if ever there is anyone who might be in the same position as i was when i wrote i would love to help them as you have helped my family.many people go through life without realizing that there really are no problems until they have one that money will not solve also most never know that there are real heros like YOU!.just a couple of things ive learned since my frightning/fascinating journey began.

BEST WISHES AND HAPPY HOLIDAYS!

Richard,

Thank you for the web site that you established. It has great information. All professionals and parents will benefit. As a Speech-Language Pathologist (11 years - experienced with early intervention), I keep learning that there is so much more to learn.

My son, * (2 1/2 years) is autistic. Early identification and intervention has been key. What I do not understand is why are children with Autism not being identified until 4-5. There is no excuse in the present day.

Thank you and Cheers,

We have only just begun our learning experience with our son. He is 23 months old and is Autistic. My husband ran across your web site and shared it with me and we were thrilled. As you know we are overwhelmed with info right now but are trying our best to learn everything we need to know. We started the process for our son *, in July and he will finally receive his first OT and Sensory Group this week. ABA has come to the house last week but of course they smile and nod until they can get a lead teacher to our home. I just want to let you know your experiences and resource information have been inspiring to us. Thank you so much for sharing you pain, your hope and intelligence. You see... your task and battle are touching. Your courage to share is important for all us parents and more important for all our children. Keep well and many blessings.

Thanks so much, I live in a rural town in NV and I am throwing the first ever autism support meeting here next week. I was going about the internet to my old sites I remembered - my son is almost 8 now and I don't do much internet stuff anymore. I have printed out a bunch of stuff and started writing stuff - like a Gift Registry for young families to have a shower party and get handy stuff like a steam vac and bread machine etc. Anyway, I am now printing off tons of pages from your site, I haven't seen where you say I can not distribute this stuff of yours and I feel confident that you wouldn't mind. I don't think I can make that many copies of everything, so I willl try to pick the tastiest stuff. I love it all, I am printing out the wasted time part too - I love it, that is my dream too, now that I am not the only one seeking services here, maybe we can set the precendent with numbers of educated parents, and it would be so much easier to hand them a copy of your trials than to try to regurgitate ours - I get so emotional and flabergasted sometimes. So I just wanted to thank you for putting all this work out there on the web, it is well appreciated by me and I hope soon this suffering through ignorance will be over - I reckon based on the exponential rise in incidence - it will be hot education for the next few years. I wish I had more time to go to all your links, but you are now in the favs pile, hopefully other people will visit your site from our meeting next week

Richard,

Thanks for the timely follow up! I really appreciate all the effort and time you have put into your web site. I have spent numerous hours over the last few weeks pouring over hundreds of web sites. I wish I would have found yours first.

Thanks for all your wonderful work, it's priceless.

Kindest Regards,

...

thank you for your site. it has supported me when even my husband , mother and brother and sisters have not. My son is hyperlexic like yours and just because he's not banging his head against the wall and running in circles they tell me "he's fine" and "leave him alone". What would I do without you?

Richard,

I visited your site a few years back..... it has grown and is a credit to you.... Thank you for having it.... it will make a BIG difference for many parents just staring out. My daughter has had ABA since age 3 (she just turned 11yo). Although she has done quite well, there are still many issues involved with her behavior(s) (SIB's). We run an after school program for her (we fund it ourselves) in which she has made some nice advancements. Again..... your site is GREAT!!!

Dear Mr. Saffron,

I have a success story and some frustration to share, but first I would like to say a huge THANK YOU for your wonderful website. What a service you are providing!

My stories of frustration in obtaining appropriate services for my 3 sons (dx ADHD-age *, Asperger's-age *, and Autism-age 5) are many. I am happy to report that, after finally realizing that I was dealing with the "Queen of Denial", our Special Ed. Coordinator, we hired a great attorney, filed for fair hearing, and got everything our sons needed. Our son with autism has had 2 years of intensive ABA, and his IQ has gone from the mentally retarded range to normal. His expressive speech is also normal. I won't go into the horror stories that came before we were finally able to get his ABA program in place; I'm sure you have heard them before. Suffice it to say that he is in a typical kindergarten class (something that we were told would never happen) with a shadow aide from his in-home program and is doing very well but still has a ways to go...

Here is my question for you. The district really, really does not like us. Four families have successfully (with our assistance) followed in our footsteps to have them partially fund ABA programs for their autistic children. They would much rather put all autistic children in their Special Day Class, a setting which caused my son to become way more "autistic" and to begin injuring himself. The district wants to set a precedent with us and end ABA services (especially use of his shadow aide who is part of his in-home program) now that he is officially in one of their regular classrooms. They want to use their people, not continue paying for services from a NPA. By the way, our ABA provider has been exceprional!!! The district presented us with a "fade-out" plan which has no scientific basis. We feel that it is very important to continue with afternoon in-home services and a shadow aide from his program (The coordination, daily communication, and consisteny makes a huge impact on his success.). He is on a trajectory to begin the "fade-out" next year, but the district plans to eliminate his aide and replace her with thiers NOW. Do you know of any studies or cases that cite keeping the aide from the ABA program as part of the inclusion plan? I feel that we need to be prepared for battle at our next IEP meeting in November--for the sake of our son and the other four who are following.

Thanks again for the great services that you are providing for so many!

Sincerely,

oh,what a timely reply. thank you for writing. Firing our advocate has crossed our minds serveral times. Sometimes I think she is the one who has created the air of hostility with our District in this case.

We live in California. We are particularly confused because they have agreed to contract with * for the transition (for our aide to teach their district employee), yet, refuse to contract with them for this particular case. We are just very concerned that our son may regress without the proper intensive therapy. Upon visiting the classroom last Friday, he was doing a few non-adaptive things that the * supervisor pointed out to the aide. The District people remarked, "that's just what he does", not realizing that these are things he should not be allowed to do according to his current program. We are miffed. We are dealing with a very large ego with the gal that runs the meetings for the District. She cannot articulate why they will not contract in this case, nor can she justify the recommendation of changing non-public agencies. This is not reasonable nor is it appropriate.

I know we cannot argue methodologies. Yet, why would the TEACCH method that failed him so miserably in Special Day class, do him so well in a typical class now?

I know our District doesn't like the Lovass method, but our son does. It feels like he doesn't belong to us when others are given the right to determine his future.

Hello! I am the mother of 2 autistic children, ages 9 and 6. I have recently been informed by my employer of 2 years that my hours will be significantly reduced because of the "special needs" of my children. I was told that the possibility of my needing to leave work to care for one of my children makes me an unreliable employee. I have not missed alot of work, certainly less than the single mothers I work with, and I feel this decision is very unfair. Can you offer me any advice or assistance? I would appreciate any info you may have. Thank you very much,

You don't know me, but 18 months ago I took something you wrote to heart and started ABA for my son. He is greatly improved, and I wanted to thank you. The point you were making was about not underestimating your child's degree of disability, etc., and I just wanted to say that I hope you don't underestimate YOUR ability to help people -- it is great. Thank you.

I just wanted to thank you for your website! After only one week of kindergarten, we've called for an emergency IEP meeting, (actually, we told the school that * wouldn't be coming back until we had another IEP meeting). His arms are covered in deep bite marks and his head covered with bruises from his self abusive behavior. My husband and I determined that this IEP meeting would be different and your website with all of it's wonderful links is going to help achieve our goal!

Many thanks and God bless you and yours!

Sincerely,

Mr and Mrs Saffran,

thank you so very much for the resources you have listed. I have a daughter, now 3, that has been recently diagnosed with PDD-NOS.

At one, she was not 'babbling' like other children her age, yet she was very agressive and very hyper. I took her to the pediatrician, he said she would grow out of it.

At two, she was still not picking up language, she was even more aggressive than ever before, and even more hyper. I again took her to her pediatrician who said that it was probably ADHD "take her home, learn to deal with it, and don't hurt her." I was very upset at this advice and got a new pediatrician immediately.

One day in particular, I felt like I could not take any more. I was exhausted trying to deal with the aggression...and I called a local chapter of Mental Health and Retardation. I had heard that they offered parenting techniques and I figured that whatever was wrong just had to be my fault--I felt like a failure as a mom. Much to my suprise, they enrolled her in an Early Child Intervention Program.

Last week, she 'graduated' from their program that ends at 3 years old and is now enrolled in a special program with the school system for autistic spectrum that is due to start in August. She is finally going to get the help she needs.

If I would have known earlier about these programs, she could have gotten help alot earlier.

So, from the bottom of my heart, I thank you and your wife for painsakenly spending hours on this website to inform others about much needed resources. Without people like you, children would go even longer without the help they need.

God Bless you and your little Alexander! I pray that our children get the help they deserve and are able to grow into the beautiful angels God truly meant them to be.

Sincerely

An absolutely awesome effort and website. I cannot believe you wrapped up such vastness (research, parents, referalls, info, experiences, IEPs, etc.) in such a great website. God Bless you.

If you care for a disabled child you may be surprised how differently some people will treat you (from a special education mail list)

Group,

As you know from my previous postings the PAC [special education parent advisory council], here in * can't get any notice, recognition and/or involvement from the school district, school committee, etc. In order to rectify this, via good practice, we have asked to meet with the Mayor (head of our school committee). Upon his "election" to office he offerred ALL citizen's an open door policy. ALL we are attempting to do is OPEN and ESTABLISH good lines of communication with the town, and to this point have been "shut out". It has been VERY difficult to arrange a date with the mayor, and then yesterday he refuses to meet with us without the Superintendent...and GET THIS...the DISTRICT'S ATTORNEY, Mr. *. I have tried to speak with Mr. * on other matters before, and have found him to be rude, harsh, unconcilliatory, domineering, etc... Can you see the scenarion being painted here... Would like advice on how to proceed from some of you seasoned PAC members out there. Also, we are considering asking for legal assistance from DLC or MASS ADVOCACY, if the MAYOR refuses to meet with us without his lawyer. Does anyone feel our DOE/PQA liasion might be of assistance in this matter?

Things are never dull here in Western MA....

Dear Mr. and Mrs. Saffron,

Thank you so much for this web site. As a child of the sixties (and a recovered/high-functioning autistic), we have been blessed (yes blessed) with the privilege of having a beautiful son diagnosed with autism. He is 2.3 right now and we literally in the beginning stages. We are setting up our own ABA program for him. I think the motivation for this started out with the fact that I homeschool my other two children. The reason have become much more deeper as I read testimonies such as yours. My husband is a * and we will soon be making the decision of where we want to move. We are thinking of California as a possibly duty station. We hear there are great resources out there. We are currently in North Carolina, and there are "few if any" resources here. As far as the county is concerned, ABA is non-conformist activity. Our biggest challenge now is of course funding. We are hiring two college students to come in 5 hours each a week to work with our son. We may be able to squeeze another "professional" out of the county who favors ABA underground so to speak. I am terrified, but excited as we begin this journey. Our son is verbal, which we have learned in a blessing even if we can't understand him or see it as functional. We also worry about our other two children being shoved to the side. Hopefully we will find balance between all. I am very honored to have found your site. I hope all is going well for your family and especially your son. He sounds alot like what my mother described me as. God bless you all.

...

It is comforting that there are so many experienced and knowledgeable parents like you willing to share your personal stories and give suggestions. We visit your ABA web site often and believe it is the best in the world. Your letter to the Brookline school system is very inspiring. After reading it along with others, we know we are not fighting alone and we admire your strength and determination.

Thanks again,

geez, 261,000 visitors!!! you've got to feel good for a the help you've given access to! My name is *, I wrote you a while ago about DDI on long island, NY, in which you soon after added it to your resource list, that is great! My son * just turned 3 on May 15, 2002 and has been at DDI since April 1, 2001. He had a tough time in the beginning adjusting to full day and the first few months would fall asleep at school by noon. In July 2001, some teachers became available to provide home services so he went to school M,T,W, 9-11:30am then home services for 2 hours on these days while still going full day (9-3:30) Th, Friday. We started seeing big changes in him but every other week or so he'd get sick (cough, congestion, ear infection-9 last year) that in Sept. we changed it to M-F 9-11:30 with 10 hours in home. In Jan. 2002 * had a his tonsils and adnoids removed plus tubes-needless to say he has had 1 cold since then and I got approved by EI to put him full day M-F plus keep my 10 hours in home and a PT twice a month. The change in him is amazing! The health factor has been a big influence! His 1 year eval last month showed he went from 50 on the bayles infant scale to 77 in one year, but the most beautiful miracle of this past year has been the strong bond he has developed with me, his father and his 4 year old big brother. His eye contact is back! Anyway I just felt like telling you Thank you again, because your resource sight has also been part of our "team". Also, I think * might be hyperlexic, by the time he was 25 months old I could write letters of the alphabet and he'd do there sound, he also is constantly looking at books (one of his best reinforcers next to cheese doodles and tickles), labels, enjoys tv credits, loves counting (although with many of his words his articulation is poor). Pecs has been a great thing for him also. Anyway if you have any suggestions for me like any materials you've found helpful, that would be great! thanks! Well, * just saved you from the never ending letter, he's grabbing me saying "Mommy bye, want eat." You want to eat *? replies "yes!" Have a great day, *

Richard,

Your web page was one of the first we saw when we recieved the devastating news that our 2 1/2 year old son * was autistic. I remember doing a web search on "autism hope" because I was looking for hope and knew very little about what autism was or whether it was possible to recover. Thanks so much for the information you have provided - it's a great resource.

While we are still very worried about our son, I must say that there are many signs of hope four months later. A developmental pediatrician stated he was "very bright" and his autism does not seem as severe as most. Yes, I hear you - it is by definition severe. True -- but he seems to be among those who are more likely to succeed with early intervention and have a better outcome.

After 3 months of ABA, he went from a child that could barely put two words together (he would say "Bird" but not "Big Bird" for the Sesame street character, for example) to currently asking for what he wants such as "I want read it again" "I want go see Mom", "I want peanut butter and jelly sandwhich". Not that "I want..." is the only sentence he can say but it's the one he seems to have gotten down the best since it has a built-in reward of him getting what he wants!

Sometimes he surprises us by picking up some language "naturally" (w/o ABA). And we can teach him flashcards so fast we can't keep up with him - he learns new words and concepts quickly.

To make a long story short, he is doing so well that our ABA consultant said she'd never seen any kid like him. While his language isn't caught up yet I could envision in 3-6 more months that he could be scoring normal or above normal on langauge. Although the development is uneven -- very good with overall vocabulary and answering questions, but asking questions is what comes harder for him. (We are working on it.)

So...what's the problem. Well, not reallly a problem but we do have some concerns. One is that his program is going so fast we can hardly keep up with it - but we're dealing with that.

Our consultants want to put Verbal Behavior into our program. My first question for you is do you think it's a good idea - for a kid who is learning fast and picking up language quickly? I remember hearing Dr. Sallows say he used some of the ideas but was also skeptical about what the VB "gurus" were claiming.

Another question which you probably can give no simple answer to...at what point do you stop ABA? Not that we're ready yet. We know another family who's son is 3 mos older than ours. He started earlier and has done very well. They are cutting down their ABA after about 1.5 years (he's 3 now) -- but I wonder if this is a good idea. When a child's language becomes more normal, arent' there still a lot of other things to cover. How do you teach social skills thru ABA? Or is it ABA but not DTT that can be used for more advanced kids who are getting to be near age-appropriate when it comes to language?

I know this is a long and rambling email but just am concerned about what happens next. Do we drop the DTT and go to VB? Or is that unwise? Do we use DTT to teach "social skills"? When is it "OK" to cut down on ABA hours (we are not thinking of this just yet!). How do you know when success is enough success? Are there some kind of milestones to look for?

BTW, saw your son's drawing. That's great! How is he doing? We all want our kids to recover. It's still very emotional for me when I think about it - we want to do so much for him - but we are not getting a whole lot of help and have to travel this road with many choices by ourselves for the most part, with advice here and there from other parents, mostly.

Thanks in advance. Don't feel the need to try to answer all my questions - just a short reply would be appreciated, to point me in the right direction. I hear stories of other parents whose kids do well and they start to cut back the ABA hours - I sometimes wonder if some of them do it too soon. On the other hand, traditional ABA (DTT) seems geared either to lower functioning kids or kids who are just starting. When does a kid who has done well with DTT "graduate" to something else. Do kids get bored if they succeed too much with the DTT approach?

Thanks,

Mr. Saffran,

I am a father of three toddler boys. My middle son's name is * and he has been diagnosed with Autism. We caught the autism at about 18 months of age and have been working with him non-stop using the ABA program. * has made HUGE improvements as he is now using sign language for more than 20 signs and starting to play approperiately with his two brothers. The therapists that have been coming to our home have been paid for by the state of Indiana and stop the day that he turns three. That is only 10 days away!

My wife, * and I have met with his school district team and have informed them of our desire for * to continue his ABA in the classroom while in school. The school's team refused the idea by stating that they have never had such a request and do not offer behavioral programs like that. I really dont know where to turn here, his ABA will stop in 10 days because he will reach his 3rd birthday and the state will no longer cover the behavioral sessions and the school district will not even think of including ABA into thier plans. Where do I go from here??? I really believe that one week with out ABA will send * into regression and we will have lost one years worth of therapy. * is getting ready to open its first private school specificly dedicated for ABA in September 2002 but, unfortunately the tuition is over $18,000/year. My family is unable to find that kind of money to send * to the schooling that he needs. I have heard that the public school district is required to perform ABA if that is what he needs to succeed. It has done the trick so far as all 5 of his current therapists belive that he will be un-reconizable from a normal child by the time he reaches kindergarden, but only if he continues the ABA. Can you give me any information or advice on what to do or where to go from here?

Thank You for your time,

"I was a Mom. What did I know?" (from About Special Education)

Dear Mr. Saffran:

I am a mother of 2 boys. My oldest is 5 and is due to enter kindergarten without a hitch in September. My youngest is 3 and we are wandering down the road to diagnosis. Currently, he is receiving special education services from our local school district. These services are provided at the private preschool he attends 5 days a week. Finding your website was like hitting the lottery of information. I don't know if ABA could help my child but at least I now know where to get some information. I teach Adult Education at night so that I can stay at home during the day with my boys. I am a state certified teacher, grades K-8 but first and foremost, I am a mother. It is so frustrating to feel that I can not help my own child at times. I collect old magazines from various sources (doctor's offices, friends, etc.) to share with the students in our adult night school. One from 2000 caught my eye and I thought I would peruse it before taking it to school. This was the first time I had ever heard of ABA. I did a search on the internet and found your website. We have gone through 2 full developmental evaluations and I have attended numerous IEP meetings with a variety of professionals represented. Yet, this is the first time I had ever heard of this ABA. ??? I just wanted to thank you for taking the time, which I can only guess how much, to assemble this wonderful grouping of resources. This is a wonderful gift you have given others. Thank you.

Saffran family,

I wanted to write you a brief letter of profound thankfulness for your website. It was one of the first ones I found when my son was 23 months old and starting to slide into autism. Thanks to your valuable information we decided to immediately sell our house and relocate to a larger city with access to ABA. We waited for 5 months for a diagnosis (long wait in Canada to see specialists like this) but we were able to work with him in the meantime ourselves and get the program set up immediately after the diagnosis. By age 2.6 * was in an intensive 33 hour per week ABA program. He is now 3.1 years old, and is doing marvelously. He has almost caught up in receptive language (had a 16 month delay before ABA) but still lags in expressive language (was a 16 month delay too, but now maybe 8-10 months), but this is coming along now too. He amazes his clinical team with the speed with which he is picking up new programs and concepts. We still have many issues to deal with, but feel confident we can meet them within the framework of ABA. May God bless you and your family for the great service you have provided to those of us just starting out in the journey. If it had not been for your website, it would have taken so much longer to get help for my son. I hope you realize your kindness and desire to help others may have saved many children from long term disability including my precious son. Words seem inadequate - but thank you from the bottom of our hearts.

Mr Saffran, I am a special educator and work with children who have severe and profound disabilities and that includes children with Autism spectrum disorders. I am not surprised at the situation you experienced. I know that parents only want the best for their children. However, I just wanted to say that Autism is becoming more and more prevalent and their are many school districts that honestly do not know what to do with them, because they are all so different and they do not have monetary resources to provide training. I have 2 autistic children along with 6 others who are all non ambulatory, non-verbal and require an equal amount of instruction and 2 assistants . We are willing but where is the time. I am not going to neglect the other children to get in 2 hrs of ABA time during the day for each Autistic child. Don't get me wrong I enjoy my job. But there are a lot of external circumstances that we deal with each day. I know that's not an excuse but I am sure my load as well as others are too much for one certified teacher. Rigth now we are working on one assistant for ABA training. I am fortunate enough to be a trained,certified ABA therapist. My school district is very rural and there aren't a lot of resources. So a one on one aide is virtually impossible. I just think that parents and teachers should take more time to see where the other is coming from and work with what are reasonable requests and functional, age appropriate goals for these children. I just wanted to let you know that not all TEAMs are resistant to outside consultants. I practically thrive on them to keep my children going. We love these children and want the best for them too. So, if there are any neat suggestions or helpful literary resources you can lead me to; other than PECs and visual schedules (smile) I think I'm overloaded with them, I would be more than happy to hear them to help make all of my children more independent.

Hello! I wrote to you some time ago about my son *. * has shown great progress over the past year and a half. He has speech five days a week. Three days paid out of my pocket. OT once a week from the school, and he has a special education teacher that comes to the house three times a week for one hour each day. The school did offer a special education class five days a week, but I refused it. I felt that the three hours of one on one was much better then the full week of sitting in a group. The school feels I am wrong, but I feel that * learns better one on one. I have tried my best at implementing ABA at home. I cannot afford an aide or even training. * learns things very quickly. He is reading and spelling. He is only 3 1/2 and academically he is phenomenal, but his communication skills are a major issue. Through ABA * has mastered many communication skills. The school feels that * is amazing. I feel that if he does not have a proper ABA program my son will fail. His IEP's show very little progress from their work, but when I step in with a different method (ABA) he learns. They feel it was them that taught him. In reality it was me. How can I go about getting ABA funded? Everything I have heard and read concerns children that had ABA through parental funding, and then the schools had to reimburse. I cannot afford that. I need help. Is there anything I can do to get the ABA program funded for my son? Am I doing the right thing for him? I am so worried that I will fail him because of my inability to pay. This just doesn't seem fair. Please, any help that you can give me would be greatly appreciated. Thank you for your time. Respectfully,

Richard, my name is * and I have a B.S. in Psychology. I am currently working on my masters in Special education. I have been working with the "Lovaas Method" for the past 2.5 years (a year in the USA where I got my training, and a year in Israel). I worked with 4 different kids with different levels of autism (2 in the states and 2 in Israel). My idea, for my masters, is combining Art Therapy with the Lovaas therapy (DT). although it sounds contradicting (which is the main reason why it sounded appealing to me in the first place) I think there is a correlation or there can be one . I have noticed that when the girl I worked with was frustrated her doodling were sharper in comparison to her doodling while being calm and happy. Also in a fine motor program where she was asked (or rather taught) to draw a straight line and a circle, the results were much clearer or correct for all that matters while she was relaxed and happy. these results clearly showed mood changes. ( my minor was Art and behavioral science. In one of my art classes we talked about mood drawing and the example above is a clear one for mood drawing).

I have found your page while looking for information about art therapy and autism (with no luck what so ever). What I did find on your site is the clearest most understandable definition of what ABA and DT are. I would like to use some of the things you wrote but I don't know who to credit it to. If you are a Dr. or a Ph.D I'd like to know so I can give you full credit, and you deserve it (I have heard Dr. Lovaas speak about it and heard a few people in the ABA field here in Israel, and didn't find their explanation to be as clear as yours).

I would gladly accept any information you can give me about Art Therapy combined with DT and ABA as a whole (if you have any) or if you could point me to where I can find info about it :)

Please email me back and tell me about your experiances with the therapy. Thank you,

How did I guess this message was from a behavioral therapist?

Hi. My name is * and I am a line therapist with WEAP and a college student. I just wanted to pat you on the back for your web site! Great job! Would you mind if I referenced from it for a paper that I am working on?

Hi,

I am a school psychologist in Sweden. I found your site via a link at www.schoolpsychology.net. I just wanted to thank you for your comprehensive site. It is a refreshing difference from a lot of the trash on the net.

Hi I am writing to tell you about my daughter * she is now almost 5 years old -next month. We got * DxAutistic at age 2and half. We researched and decided to go with an a.b.a. program. We started it in March of 2000. In school * was in school for 25 hours a week,with an additional 1 hour a day at home . Making her program 30 hours a week. She has made tremendous gains-even poty trained. Her Dx changed to P.D.D.N.O.S. She is doing extremely well we are looking into putting her into regular kindergarten next year. I believe its because of A,B.A. She needs to be re-evaluated-but its really hard to tell she has had problems. Her eye contact has really improved her sensory issues are barely there. She no longer needs a schedule board. She talks well and can hold a conversation. Once all these improvements have come about when do you go to next step? what is next step? Her teacher doesnt think she needs the a.b.a. anymore and is concerned she may be bored in kindergarten. Please e_mail back.Sincerely

Just wanted to drop you a line and say what a comprehensive site you have on autism and everything involved. I am so looking fwd to sending it to all the families of our MV FEAT chapter. Here in OH. were seem to have too damn many children on the spectrum (22 within a 2 mile radius of our home). This info will be a blessing to them. Like a one stop shop. Thank you for the time I and only imagine you have dedicated to this effort.

Dear Richard, I just read your Bio. Wow! I have been a teacher in an autistic program for 3 years and I can relate to everything you said. Prior to working in this program I worked for 5 years with the emotionally disturbed. What I find so disturbing is the amount of behaviors in the autistic program. When I questioned what is being done about the students aggressive behaviors, I was told that it is part of their autism and I needed to ignore it! After about six months of watching staff and other students being physically abused, I relied on my training from working with the emotionally disturbed. --I ignored nothing! I continue to work on behavior modification daily with students who have come from other classrooms in the program. I am VERY frustrated. The basic tenants of the program are: having the children follow a schedule, teaching them how to do work jobs (starting at preschool age), doing knill, and using PECs. Are you familiar with PECs or Knill? Both are programs designed to encourage communication. I would love to implement new ideas and learning strategies into my classroom and feel that my documentation would warrant trying new strategies. What types of strategies were used to encourage your child to communicate? Any information you have would be very helpful. thank you,

Dear Richard,

Thank you for your awesome web site! I am a speech/language pathologist who works at an early intervention program in * and have become a convert to ABA having seen it do what I could not. I continue to work with many PDD children under age 3 and work hard to give them intensive ABA programs as I continue to learn as much ABA as possible. I recently completed a PECs training course and work closely with * with the children on my caseload.

Recently our program has moved away from ABA to a much larger emphasis on Floortime. I have great concerns about this approach even after attending the national convention in November on Floortime. ...

I find my background as a SLP inadequate to provide the kind of intervention these kids need. In the mean time I am constantly getting into trouble for "advocating" for the children on my case load as they turn 3 to make sure they get an intensive ABA program with adequate supervision. Just last week my boss got called into a local sped dir office due to my "advocating"! Yeah!

In the mean time you need to know the "Floortime" people are coming en mass to our area. They are radical, anti-ABA people who want "child-led" instruction and feel "respecting" children and getting in tune with their "affect" cures they much better than ABA. These people want our EI program to leave ABA and "trust them". They have very little in the way of goals or plans. Ugh! Get ready. They are here!

Mr. Saffran,

I am an SLP working with a large Autistic population in Georgia. I have found your site to be extremely well organized and helpful. In reading your introduction I could almost "see and hear" the frustration and dedication you must feel as the parent of an Autistic child. Your dedication to dispensing accurate information regarding Autism is to be commended. As a service provider I can assure you I am thankful for kind guidance and for the patience of helpful parents. I currently spend many hours outside of what I am paid to spend, researching and reading about the many faces of Autism as do many of my peers. It is a very nebulous disorder and presents with a different range of behaviors with each individual it affects. What you find works like a charm with one student will not with another. How typical is that? My current frustration is balancing professionalism with work ethic and diplomacy. What I will now attempt to do is explain from an educators prospective what I mean by that statement. Please continue to read with patience and forgive my verbiage as it may be lengthy and less than eloquent. I intend to be as truthful as I can from my perspective. As I see it, parents produce this unique bundle of joy that turns out to be a little different from what they ordered. They quickly begin see that this different, but still wonderful creation appears to have some very unique needs. While other parents are easily able to meet the needs of their little ones, parents of Autistic children may see that they are frequently enlisting the help of others to figure out the needs of their little one. The first scoop of dirt on the pile of proverbial frustration that results in tremendous inspiration to return this "Autism" that was not ordered. The child then comes to the school setting and hopefully is met with professionals who have dedicated their careers to helping children celebrate their strengths and overcome weaknesses. Your "exceptional" little one is just what we ordered in that we could have chosen to be stock brokers, however; we asked to work with children who are considered to be "exceptional". In my county, * Georgia, that includes participation in the operation of an inclusion model for our Autistic population. * designed and piloted the program and continues to monitor our progress. I have no idea how successful or progressive we are on a comparitative basis, I only know that we all give a tremendous amount of energy to the effort. Sometimes that effort is overtly rewarded by our students measured success and sometimes we must assume covert success is present in order to justify continued efforts. In * County I personally can say that in some situations, if we measured our success by kind, and encouraging comments from parents we could potentially feel like failures. Not all parents, but certainly a few appear so frustrated, obsessed and bitter about the Autism that they did not order, but must now live with, that they allow the dirt of frustration to be piled higher and higher without ever considering that they may possibly be holding the shovel! That is the "bundle of joy" that educators did not order!!! If an educator is obviously not doing their job then that educators integrity should be questioned, however; I think it is flat out wrong to hold an educator responsible for a tenacious diagnosis of Autism will will not cease to exist. Here is where work ethic comes in. Our school system in Troup county is full of professionals there by choice from 7:30 - 3:30 being paid to work with children. For SLP's that means caseloads of up to 55 students with our efforts relative to each child's needs, no one student being more "exceptional" than another by definition, if we are doing our jobs fairly. We realize quickly, just as the parents at the beginning of that nurturing road of parenthood realize, that we need help to successfully meet the needs of our special students. We are therefore all on the same team!!!!!!! Service providers are not an enemy that must be convinced to change our belief systems or constantly urged to fight in order to earn a certain status on this team. Assuming a professional is worth his/her oats, they just need to be made aware of the need. We cannot however, single handedly transform your "order" to exclude Autism, we can only continue to search for the "thing" that works for your child. How typical is that? In this described quest, it is my opinion that parents must buy into the programs they fight so diligently to implement in the school systems. Their cooperation in my opinion is paramount to the ultimate success of their students at school, and vice versa. Parents cannot play the "typical verses special" cardgame with their children's education and expect timely results. Students cannot be held hostage to the use of a system at school and potentially relieved of the use of it at home. "Typical" at school and "Special"at home undermines educational efforts in either setting. Please be sensitive to the plight of some educators and consider helping other parents to see that sometimes their obsession with making their child "typical" most hinders the process of "making" typical happen. Here is where the diplomacy comes in, in some cases parents could possibly meet with so much more success if they received counseling regarding the mounting frustration sometimes generated by dealing with Autism 24/7. Educators certainly cannot make that part of an IEP, but boy would it be a helpful goal! Teachers, choose to read professional journals, attend workshops, come early and stay late, and delight in figuring out your child's strengths and how to teach that unique little one you created. We also appreciate kindness, patience and to be acknowledged as team members and professionals. What a load off a parents back if they could just get to that point and get the gun out of their allies face. That one educational stratagy costs nothing and buys alot.

Hi Richard-

I am writing to thank you and to compliment the appropriateness of the information on your web pages. From what I read, I gather you are a parent and if you are not a professional in ABA, you are a very well informed parent. I recently moved from Utah to New York to work in an ABA school providing services to children with disabilities mainly autism. I got to your site through a Utah site, but I don't know if you are affiliated with them at all. As for my current interest in your info...I established a large scale parent education program for my school. Actually, it is in progress. I give workshops, host support groups, provide individual ABA services to parents and families, encourage advocacy, and try to give them the best information about services. This was my dream job. I was in the process of searching for credible sources that are "parent-friendly." Thank you. Your info was just what my group of parents need. And I felt it was "good" information especially about ABA

...

Hi, A friend of mine (a parent of a child with autism I used to work for) emailed me your site. What a great resource! I have been fully trained as an ABA therapist and have been working in the field for the last 5 years. I am currently in grad school for speech and language pathology. I just wanted to say that your site has proven to be a valuable source for information in both my work and schooling. Thanks a lot!

I am the parent of 3 boys with autism...my 9 year old had years of "aba" therapy and experienced the aversives and control mechanisms that it implies....he suffers from post traumatic stress from the entire experience.(restraint, barbaric behavioral interventions)....please include the risks involved with such an intensive controlling therapy that does not allow for self growth and emotional growth which is critical in most of these very young children who are lacking a sense of self and are not nearly ready for the "drilling" that a typical 3 or 4 year old could never handle .. it is not a miracle cure that it is being portrayed as.......please check out the book by Dr. David Holmes, "Autism through the lifespan""The Eden Model", a behavioral program in Princeton, new jersey...please read his section on aversives, and how he behaviorally deals with behavioral problems...., "tying children to chairs, making them sit, forcing them to do things...it is horrifying..... thank you for your time....even though i am sure aba has helped some children...it can be quite dangerous as well.....thank you

Hi Richard,

I inadvertently came across your site while looking for something entirely different, but was interested nonetheless as I am the parent of an 8-year autistic son.

Our paths were very similar, although the * School system was not so resistent. Once we told them all about ABA (we had * work with our son in a special study, and also had * some with us to the meetings) and showed them the way, the were mnore than happy to fund the program. We hired the consultants and therapists, I built a dedicated therapy room in my house to run the AB program in, and we went at it full force.

The difference is in our children. Despite the best efforts by a truly remarkable and wonderful team ("Team *" - many of whom will now be our friends for life), it turns out that * is at the wrong end of the "Richard's Rule" scale. He is 8 years old now and in a special needs classroom at a * elemetary school. He has a wonderful teacher, and a competent ABA therapist assigned to him full time, but the official home program was stopped a couple of years ago. While he can operate his CDROM games by himself, and operate the VCR, his expressive language lags far behind his receptive language. He has a small vocabulary that he typical uses one word at a time. When we ask, he is capable of converting that to a simple sentence, although people outside the immediate family might not understand it because is diction is so sloppy. When he was young, we were very hopeful about his future, but now we have resigned ourselves to the fact that he is unlikely to ever be independent.

...

Dear Richard

First of all I would like to congratulate you on your enormous effort of constructing an information site for other parents of children with autism to benefit from. I'm sorry this letter is long winded but it is difficult to make any shorter but there is a purpose, so I apologise but ask you to please proceed.

I live in * and also have a 7 year old son with autism. We participated in a home program from * age of 2yrs4mths and carried it through until the beginning of this year. * is in mainstream schooling and coping well and most people wouldn't notice anything different from other children. He still has a few problem areas but has a sound understanding of emotions and is very social and popular with his peers.

...

Mr. Saffron:

I am so pleased to see that you have had a positive experience with ABA, and that your child is making progress with this therapy. I have worked as a TSS in a home-based ABA program, and am a master's candidate in occupational therapy. I think that your web site provides some very valuable information as well as prime networking opportunities. I hope that you will consider some of my comments as they pertain to your site.

I have seen ABA both work, and fail, and as with any method of teaching/learning, each person must find what is right for himself &/or his child. There are many children who may benefit from ABA, but I truly caution you in using the word "recover." Autism isn't cured. Even such accomplished persons such as the renowned Temple Grandon still have autism; they have learned potent coping techniques, but they still have autism. Some children will never benefit from ABA. Some children are more profoundly impaired than you can probably even imagine, and ABA is not the key to unlock them.

My guess is that you would concede to my previous point. The more pressing point from my perspective, is an element of realism. I have seen many parents fight and fight for their child, and somehow, the welfare of the child gets lost, and the fight takes center stage. We all have a somewhat limited potential... I will probably never understand higher math, or have a reliable sense of direction... everyone has some limitations. I hope that as your child grows older, you will recognize that there are some limitations, and you will focus on areas for maximal growth potential. Some parents fight for academic preparedness and full inclusion when their child is still unable to carry out such functional skills as counting money, taking the bus, ordering a meal, asking for help, cooking a meal, etc. I would encourage you, and other parents, to strive for maximal community independence, and let the school districts pay for that... because the money & the resources are going to be harder to come by once your child is 18 or 21 (depending on your state's legislation). Concretely, if your child is having difficulty with both money skills, and with social studies class, I would really suggest focussing your IEP goals,etc. around that functional money goal. The school district will (hopefully) work hard to help you and your child meet this goal, and others like it that work on functional skills. I'm sure that your goal is maximal independence for your child, and why not work with your child and the school to promote the most realistic, and most functional skills while you have the government paying for it, and while you are around to most effectively advocate for your child.

Just some thoughts that I hope you hear out.

Dear Sir~

I am the mother of a 6 yr old son with autism (and 3 other children). My husband and I adopted * when he was 4, along with his twin sister (who was diagnosed with PDD, Bipolar, ADHD, ect..but is now normal :) ) . * has other medical issues as well.

Is there a listing of schools, residential, or day-schools, or programs, around the country that are implementing ABA for school-aged children??????

We use an intense program (similar to that available thru the NACD)~ a Neurodevelopmental program, that entails about 4 hrs per day of one-on-one therapy activities with * in our home (which we are trained to do). The activities include sound therapy, auditory processing, physical therapy, speech and language, sensory integration, ect. It is a great program. We pay for this (dearly) privately, and * is considered homeschooled. Our local district can offer NOTHING to *, that we want, anyway :). They don't think * can get better (tho he has exceeded ALL the expectations his drs. had for him even as an adult!). So, anyway. We also use ABA, following Catherine Maurice's book. This has shown great improvement as well.

We are finding ourselves unable to fully invest the time and energy, and money, required for this home program. Nobody around here is doing ABA for school-aged children, that I am aware of. There is one program that is for preschoolers, and it has a waiting list. We would like to enroll him in a school that will implement an ABA program with him, or something very similar. When I visited the schools around here, the autistic children were stimming to hearts' content, and not encouraged to participate, not taught new skills (compared to what could be done). After seeing how far our son has come, our hearts broke for these undirected children. So, we do want * in school, but we want it to be helpful. We are even willing, at this point, to consider a residential setting if it were in this part of the US (northeastern).

Can you please direct us, or offer advice? We are very, very burned out and need help.

Thank you,

This one is from a self-proclaimed psychic... couldn't she just look in her crystal ball for the answer?

I have been to your website, and looked very carefully for the part "what the experts don't tell you". I was unable to find anything resembling a conspiracy in your webpage. Can you explain what you are talking about, please. Thank you

Hi,

I just wanted to let you know that I (*) have gotten a lot of questions about ABA and help in Texas, and I think it is probably the link from your web site. Saying that, I wanted to thank you for linking my site on your very respected site. It has led to networking parents here in Texas. I am talking with Sea World of Texas about having a special day for Autism Awareness and families dealing with autism (they do it in Florida). This has been a result of meeting so many people in this state. I make it a priority to have my site up-to-date so that other's may find good information. I have been able to provide names & numbers of ABA consultants and therapists, suggest techniques that we have used, and what we do to handle certain problems. This has helped me more than any of the parents that have e-mailed me since it pushes me to keep my son's ABA program top-notch. By the way, he is making great strides. He has sentences now, WOW! He is so much more spontaneous with his language and interaction. I tell parents if it wasn't for our ABA program he would still be non-verbal and hitting everyone (including himself).

I just wanted to thank you again for letting me give a little back to those families that are struggling with autism/pdd.

Most parents accept whatever services are offered their child. Of those who do ask for more services, most accept a compromise and make up the difference out of their own pockets. Of those very few who actually enforce their child's civil rights, there are some who make all the difference:

Dear Mr. Saffron: My name is *. I have a * month old PDD-NOS son. His condition is something we have been aware of for quite some time, and I have been researching this issue for more than one year. I have been reading your site and am quite thankful for all the work you have done to assist other parents through this maze. I am currently embroiled in a due process hearing with [early intervention] here in Texas. Some local [early intervention] providers in Texas do provide ABA services and therapy, most do not. I have chosen to file suit, not only to serve my child, but also in hopes of opening up doors for children beyond him. My question to you is [deleted, as this matter is currently before the courts]

Dear Mr. Saffran,

Thank you for responding to my request. Your site is extremely user friendly and has resources I am yet to be aware of. I look forward to utilizing it to the fullest.

Mr. Saffran, I have made several attempts over the years to network with other parents within the city limits of *. It has been my experience many parents demonstrated a contentment I just could not understand, and were not freely willing to discuss how services were acquired etc.

I realize this may not be your area. Maybe you never had that experience but as for me, it frustrated me tremendously. For example, I have a case worker at our local regional center (*) who frequents the local FEAT org. in *. For some strange reason my family gets virtually no support in terms of association, resources and services from this person. I ran into the worker at a parent workshop and didn't get the time of day from that person, not even a discussion.

Needless-to-say, I will be ridding this person of their involvement with our case but this is my poor attempt to describe a couple of experiences we've encountered. We're hoping for new associations and a new start in educating ourselves.

Thanks for hearing me out.

What a beautifully designed web page. Thank you! In short, my son was two when diagnosed, had three months of discrete trials (big dividends!), moved to a new "program" at three with NO ABA, very little continued progress. He is now 3.5 years and I'm panicking. I believe ABA is the answer - but the school will not provide. In the immediate future, I want to use "formal" ABA at home as many hours as possible. Is there a training facility for parents? Anywhere? What are the results of parents as therapists? We are not in a financial position to hire a therapist unless our insurance helps, but that could be a long fight. I need to do something NOW. I was very involved with his ABA those three months when he was two. Any suggestions? I'm feeling a great urgency as he is falling further and further behind. Thank you so much for your efforts.

my son wa diagnosed with autism when he was three. The doctor did not give us much hope for his future. We did not accept it. We studied all the alternatives and ABA becameour choice. We fought the school so that they would pay for a consultant in ABA, and pay for the therapy. That's what they did. For two years we worked very hard with our son, my husband and I, we also had a wonderful school aide who loved our son so much that she became her third therapist. He got his 4o hours of therapy. When he was better we decided to move away from our town, a new beginning for our child. He was in kindergaten without a aide. He went to first grade and his teacher adored him, she said he was the best behaved child.Nobody knows about him. Sure he has still some speech problems and he gets speech in school but what I do with him is normal homework. In his class he was the best reader . He does very good in math too. He is very special to his brother and baby sister . And I know why God gave us this child so that we could give him back his future. The e-mail I'm writing under is not mini, I'm on vacation with the kids and I will be here until the end of the month. I am glad to hear that your child too is doing well .But I have friends i left behind still struggling, and I'm sad for them. bye and god bless you and your family. Mrs *

Richard,

I've written to you before and still consider you to be one of the main influences who encouraged me to go to PCDI to receive further training in this excellent field. I just am taking a minute to let you know how wonderful I think you are and how thrilled I am to revisit your extensive website. Currently, I am presenting a workshop to a 7 county school coop in Indiana about ABA. We are instigating some good progress, awareness, and as always, controversy here. My next step is to begin law school next month in hopes to continue advocating for children and families to make effective intervention more readily available.

Again thank you and keep up the amazing work,

Hi Richard,

I am a teacher in the uk and I have just been looking at your site to pick up information on autistic students. I teach young adults 16 - 19 years old and I feel that your ideas and insights will be a great help to me. It is so important that parents help to inform the so called'professional bodies'. Your descriptions of autism and aspergers I feel are probably of more value than much of the information I have received in the uk.

Thanks for taking the time to produce this valuable web site.

Hi. I just read your site. Very good information. I am currently an ABA therapist and love every moment of it. It's amazing how well this program works. I have seen such vast i mprovements with my clients in short periods of time it's very exciting. I wish you and your family the very best. Thank you, and Have a great day.

"Parents found incompetent to protect child from school system" (from news:bit.listserv.autism)

My son is autistic and was in the school here in a self contained classroom. He has been in this class room for several years. He has a behavioral problem. The teacher and the aid that were trained had to leave. Instead of the school finding another trained teacher, they put my son in the care of the teacher that was over the rest of the class and hired two janitors as bodyguards for the teachers and aids. I could have handled this if they would have provided training for these people, but the school would not provide any training.It may be to late to sue, because it has been a year since everything happened. My son regressed alot that year. He came home from school twice with a sprained wrist. Then at the end of the year the teacher, an aid, and an unidentified person, filed charges against my son for scratching them. They were told not to intervene when my son was biting himself ,as this was an attention getter, but the teacher wouldn't listen and when she tried to stop him he turned on her.The end results of this is that the County Attorney told me that if I didn't do something with my son, like take him out of the Lamesa School District and put him somewhere that he was going to take him to trial have him found incompetent and take him away from us.My son was 18 at the time. This is a long story and you can read about it on his webpage if you would like to. http://www.geocities.com/juju_9 [no longer exists, try archive.org]

TO RICHARD SAFFRAN, AFTER READING YOUR ARTICLE WHY MOST CHILDREN DON'T GET THE HELP THEY NEED. I REALIZED I TOOK FOR GRANTED THE AUTISTIC PROGRAM MY SON WAS IN AND THINKING THE TEACHERS WERE DOING EVERYTHING THEY COULD FOR HIM. AFTER REALIZING I WAS NOT AS INVOLVED AS AN ADVOCATE AS I WAS TWO YEARS PREVIOUS, I NOTED I MAY HAVE BEEN HAD BY THE THE WARMTH OF THE TEACHING TEAMS SUPPORT. FOR THE FIRST TWO YEARS I DID EVERYTHING I COULD FOR MY SON TO GET THE BEST SCHOOL AND SERVICES. AFTER THE AGE OF 5 HE WAS PLACED INTO AN AUTISTIC PROGRAM AND WE STARTED TO SEE RESULTS, HOWEVER LIKE YOUR ARTICLE STATED I SAW ACTIVITIES OF DAILY LIVING RESULTS AND SPEECH RESULTS SO I ENTRUSTED THE TEACHERS TO CONTINUE. NOW WHAT I REALIZE AFTER A YEAR OF THE PROGRAM IS HIS EDUCATIONAL RESULTS COULD HAVE BEEN BETTER. HIS SPEECH HAS DECLINED THE LAST FEW MONTHS AND HIS EDUCATION HAS EVEN DECLINED. IT WAS THE ACTIVITIES OF DAILY LIVING INCREASE THAT MADE ME THINK HE WAS DOING WELL ON THE OVERALL. I NOW KNOW DIFFERENTLY BECAUSE I TRUSTED TO MUCH. YOU CAN'T TRUST TO MUCH, YOU HAVE TO STAY AWARE AND COME ACROSS AS INFORMED AS POSSIBLE. NOW IM WRITING THIS LETTER TO YOU TO ASK YOU FOR SOME ADVICE. I NOW CONTACTED THE DISTRICT OVER THIS ACKNOWLEDGMENT HOWEVER THEY LIKE EVERYONE ELSE ARE NOT ALWAYS COMPLETELY ON YOUR SIDE. WHAT ELSE CAN WE DO OTHER THAN WORK ON THE IEP AND HIGHER A MANAGEMENT CONSULTANT TO ENSURE HIS EDUCATIONAL GOALS ARE MET? ANY SUGGESTIONS? ALSO WOULD YOU HAVE A LIST OF SPECIAL ED CONSULTANTS FOR THE STATE OF NJ, WE RESIDE NEAR *. ANY SUGGESTIONS YOU HAVE MAYBE HELPFUL. PLEASE RESPOND BACK. ALSO WHO WOULD BE THE BEST PROFESSIONAL TO EVALUATE YOUR CHILDS IEP GOALS AND ADD NEW ONES?

Just wanted to say thank you for all you have done to put together the information on ABA and autism resources. I feel pretty sure that my son (age 3) is on the left side of the curve like yours. He is fairly intelligent but is also quite disabled in several areas. He looks "so normal" to most people including teachers, pediatricians, therapists etc. that it took a miracle just to get anyone to believe my suspicion that something was wrong.He is also extremely handsome and cute. People gush over his beautiful eyes and long eye lashes and his hearty laugh. I am lucky that he does have many periods of just being so cute and fun, but it is often difficult to get others to believe that when his other side comes out that it is due to his disability. I could die every time someone remarks that he acts that way because I am a bad disciplinarian or "she must not care how that kid acts". It took 6 months to get into a good specialist at the Univ of Michigan and then it took several more months and a very good attorney to get an IEP written and implemented for an autistic child. I am still in the settlement stage with our school district, but I am hoping that within the next couple of weeks everything will be settled. My son did get offered summer services and is going to summer special ed preschool and will get a full day program in the fall. I am exhausted and my home will never function like the home I had in mind (our walls are full of chalk boards and felt boards and velcro strips for picture cards and lessons on learning ABC's and names of things and colors and shapes and animals and every other concept a preschooler needs to learn), but it is all worth it. He just turned 3 a month ago and had been in an Early Intervention program for about 9 months and I more or less home school him for another couple of hours every day after I get home from work at night. I am a single parent and it takes a lot out of me sometimes, but I am learning when and how I can give myself a break and learning to accept appropriate help from others too. Letting other people help was a big step I had to learn to take. I really thought I could do it all, but I found that it takes a village........and a great attorney. I am just beginning to learn the principles of ABA and can see how it will really help my son and I both. Everything up to now was very hard, but many things are beginning to settle down now that I have gotten appropriate services lined up for my son.

I have bookmarked your site and will share it with others. Again, thank you so much for all you did to put all the information together in a useful format for other parents and their children and family members. Time is of the essence in achieving early intervention and you have probably shaved 5-8 months off what it would have taken me to find the resources I needed to learn about ABA and other important techniques. Thank you for that gift of time. The best of everything to you and your family in your efforts to help and honor and nurture your special needs child.

Sincerely,

Thank you for your reply. I have a friend who's grandson is in your school district. They have a lot of help for SPED students. I am impressed with what she tells me and how they handle her grandson. He's in high school.

Actually, in a rather risky move, I withdrew my son from high school on his 16th birthday, put him in GED classes for one week and they determined that he was ready to take the tests. He took the five-section test on Friday and Saturday of this past weekend. Once we receive confirmation that he passed, he will enroll in Mt. Wachusett Community College in Gardner for the Fall semester and get on with his life! He also wants to take Psychology of Self this Summer (a 3 credit course) to become acclamated to college classes and the campus. He is so de-stressed and has resumed reading lots of books! He's into logic and different philosophies. Look what that shool had done to him. And it wasn't just that one--it was every school he went to. It was a struggle.

I tell you this story so that you at some point may pass it on to help someone else. Let's pray that is continues to be successful!

Dear Mr. Saffran,

Thank you so much for all of the information on your wonderful web site. When my 2 year old son was diagnosed 7 months ago I read about 10 books (all depressing) and then I got on the Internet. Your site came up as a result on the search engine. I learned more reading through your web site and exploring the links than I ever could have hoped. Thanks to you my son has greatly improved. We are behind the times here in San Antonio. I started getting calls from newly diagnosed families-my ECI program gave out my name - so I decided to take a point from you and make a web site that they could refer families to. I have a special page for resources in the US and a specific page for resources in Texas. It took a long time to find this information and type it in (I am slow with typing numbers). I hope that you will consider adding my web site as a link in your page. It is not as good as your page but I am hoping it may help some....

I have *'s first ARD [transition from state to local services] next week (he is turning 3). The school district is already out of compliance with the transition process but I have been encouraged not to make waves b[y] other parents because then they will give you only the minimum help. It is amazing that everyone else has control over your son's education but the parents. The ECI program said that they could not say he would regress without speech therapy so they district does not need to give him speech this summer. They all feel threatned by our ABA program. I had to change my ABA page to minimize the work we are doing with our son because they used that against me (ECI) and did not give us much for therapy (we do have insurance but ECI determines how much is appropriate). If we did not do ABA our son would still be at zero words. This summer we ARE going to do 20 hours a week with 2 therapists and I will work with him in the evenings. We are so short on therapist in this area. Thanks again for all the guidance and help you have given all of us families.

Mr. Saffran,

I am writing because I am highly impressed by your webpage. I have been a so-called therapist for over a year working with some kids diagnosed with autism, and I find that your connection is absolutely the best I have ever been fortunate enough to come across. You have somehow combined a portfolio of links with a touch of realism, giving people the chance to research and find answers to so many questions that are so hard to answer. I think that parents dealing with children with autism look to some of us as therapists for answers to their kids' progress, diagnosis and predilections for the future, and you have captured how difficult it is and yet how far you can go while trying to do so. So many people have asked me if their child is really autistic. I feel as if your webpage is a good starting point for parents who are too scared to dwelve into the whole autism world, hoping that their kids will wake up one day and be completely typical, and reluctant to spend time learning about their children and all that is important within this phenomenon. It pains me that many families do not access resources and information about autism to aid their kids because they are unwilling to accept this diagnosis. Thank you for providing a resource that I can direct my families to, in order to answer those nagging painful questions that we all wonder about. I appreciate what must be a time-consuming effort to stay on top of your resources and links. Somehow you have managed to capture an element of autism that is so hard for all of us to touch upon while remaining professional and tactful, and still drive right into the heart of all those questions and uncertainties that linger. Thank you again for the time you've spent trying to be a help to everyone here.

Dear Richard,

Hi My name is *, and I have an autistic son. * is now four years old, and has been getting special ed services for about two years. He started Early intervention at age two (not ABA) he received speech 3x a week and special ed 3x a week. I never heard about ABA until last spring when he was diagnosed with autism. I asked his teacher at his special needs school if this would be helpful for him, and she said " no it would not be beneficial for *". Well needless to say I told them to go ahead and place him in their ABA classroom. He only received two hours a day and I saw a slight improvement. After that we enrolled him in a school with more ABA services about 4 hours a day, and was able to get another ten at home. This has helped tremendously! He is now on his way to recovery. Now his CPSE meeting is coming up next week, and they informed me he will not get any ABA therapy after school ( their policy!) I am very upset he just got started with good ABA teachers and now in 3 months that's it gone. Is this Legal? I'm not sure but of course I want to fight it. Can you offer me any advice about how many hours is to much? Can they put a cap on services? Sorry I guess I have many questions. I think it is so wonderful that you have this website for us to reach out and talk to you, and to look up all this great information. Thank you so much!!! I hope I did not ramble on and on I am just so stressed out now about this. Well I hope you can answer my letter, and again thanks

Thank you for you web-site. It has helped my son get on the right track with ABA.

-Sincerely,

Hello. My name is * and I am currently a junior at * High School in Pittsburgh Pennsylvania. You are probably wondering why I am e-mailing you, well it is kind of a weird question. I am very interested in becoming an ABA teacher, and working with autistic children. Since it is quickly approaching my senior year I am searching for the right college to attend. However, I do not know what sort of major I would need to major in, in order to be qualified to be an ABA teacher, whether it would be something like Special Ed. or something completely different. Any information you might be able to send me would be greatly appreciated, I have not been able to find much. Thank you for your time!

With great appreciation,

Mr. Saffran, I am a fifth grade teacher in South Texas. I have a child who has been labeled "borderline autistic" in my class. He is considered a special education child, but since we do not have a "self contained special education program" at my school, meaning an all day, smaller ratio class, * is in my care for a little over half the day. He can learn but, as I have read and experienced, only in a very structured one- to- one environment. I try to modify the best way that I can, but have very little education on the topic of autism. If you could recommend some books or journals that would help me give * the best education I can provide, I would be very grateful, and so would *. Thank you for your time,

"Can I clone my son's teacher?" (from news:alt.support.autism):

Hi!

I am really happy today. My son's school has (mandatory) parent conferences in the spring, when the students get their mid-year report cards. Ours was today. Joshua's teacher has started doing all of the things the OT suggested, except where my son objected. (He doesn't like lollipops!) She mentioned that whenever he seemed apprehensive about doing anything that would make him "stand out", she had the whole class do it. For example, she spent about a half hour teaching the students to "play wrestle" (press arms or hands against those of a neighbor). She said all of the kids seem to really like to do it, and it helps them all to concentrate and stay on task afterwards. This is especially helpful, as we have been having a lot of rain, resulting in the kids having to do recess indoors--and the school doesn't have a gymnasium. It's sunny California, after all! The kids even requested to do it the day Joshua was absent.

Last year, we asked his teacher to make a list for him to refer to for the sequence of tasks for the activity centers. (All but one center requires the students to work independently or with their group, without an adult.) What did she do? Printed a list that said something like, do tasks at first center, clean up. Do tasks at second... (same list every day, not specific to tasks) She didn't want to take the extra time to do it in a more useful way.

Well, this year's teacher sees absolutely nothing wrong with taking a few seconds to make a checklist each day for him. In addition, the other students have been told that if THEY have trouble knowing what they should be doing, they should check with Joshua, as he will be able to tell them. She is making a point of letting Joshua know that his good reading ability is a major asset to the class. Since she started doing this, he has started getting his work done on a regular basis, and not wandering around the classroom when he should be working. I am so thrilled!!!!

She told us that she has seen major improvements in his focus and attention since starting the OT. It is so great to have a supportive teacher this year.

Oh--I'm also so impressed with his report card. He got great effort marks for all academic subjects, including art, which has always been a major problem in the past. He is willing to try in her class, as she recognizes when he needs a little help BEFORE he gets frustrated. His citizenship marks are also greatly improved. His biggest problem (big surprise ;o) ) is "self control". For the last two weeks he has been sitting up near the teacher's desk, with no "neighbors" due to a repeated problem with shouting out the answers, when she is calling on someone else. He finally got the point that she wants to give OTHER students a chance to answer. So, what does my cherub do? He starts whispering answers to his neighbors, so they can raise their hands and give (Joshua's) answers. He will be moving back from his "island" to the "mainland" very soon, though, since his behavior seems to be improving from the OT. Besides, the teacher says another student needs the island. The teacher does need to be careful, though--because of the fun way she phrases it when moving students, they seem to think of it as a privilege. They know WHY they have been moved (usually talking too much with their neighbors when the teacher is talking), but also know that sitting at the island will help them to get their work done and stay out of trouble. There really is no stigma involved.

This teacher is doing everything within her power to help Joshua not only succeed, but to excell--in his eyes and in the eyes of his peers.

I am so proud of the hard work Joshua has been doing and the improvement in attitude and behavior he has shown. Call me one happy mom!

Suzanne (who may actually share her Samoas with Joshua!)

Hi. I just thought I'd let you know that it is not possible to *recover* from autism. Even if a person is very high functioning and is able to pass as neurotypical, they never cease to be autistic. Sorry.

*, an autistic adult

Mr. Saffran:

I am 40 yrs old and in my second year of law school. I could not decide what type of law to specialize in until the last few months.

Last summer, my 2-yr-old son was diagnosed as mild/moderate autistic, and since then our lives have been transformed. I now intend to make a career of legal advocacy for disabled, preferably autism--insurance, educational, employment, civil rights, wills & estates, etc.

I just now found your website and am VERY interested in your process of fighting for and obtaining payment for ABA by your school. I've never heard of anyone else being successful with that, but I'm sure you can appreciate why I feel I HAVE to get your story!

This is not urgent--please respond at your convenience. Thank you in advance.

I have a 5th grade child that has recently been diagnosed with PDD. She also has ADHD. We live in *. I have tried work within the system. The principal has lied to me on several occasions, the school district doesn't return phone calls or when they do, they tell me to talk with the principal. This principal has told me that her staff doesn't like my child & doesn't want to be around her. I constantly receive conduct cards for the same behaviors. She doesn't have an IEP because this district says they have to even more testing on her. I spend hours in meeting and on the phone with these people, who do not listen. They double talk and do not follow through with anything. They want me to punish her at home. Her doctors tell me not to do it. I don't have all these problems at home. We have some problems but nothing like at school. My daughter doesn't understand why people don't like her and why she's constantly in trouble. She likes school and wants to learn but doesn't really want to be there.

I've given the school phone numbers of her doctors, but the school hasn't called. The doctor's have left messages, but the messages go unanswered. I've suggested the school get in contact with a group called Project Access for help. They haven't done it.

I've had my health insurance pay for speech therapists and tutors because this distirct doesn't want to help her. I've taken her to numerous doctors who all tell me the same thing, "These behaviors are happening in school not at home, and we need to find out what the problem is at school". How can I do that when the school administration lies to me and doesn't seem to want to help? They tell me one thing but do another. It's gotten to the point, that I'm not even interested in attending meetings any more. When I do attend, I don't have the right mind-set. I go knowing that nothing will be accomplished. Right or wrong, I am so grateful when the kids get a day off school. It's just one day of peace! :)

I'm very frustrated. I'm losing sleep and at times, I think I'm losing my mind!! My friends and family thinks I should hire an attorney. I'd prefer not to do that. I don't know what to do. Everyone tells to "hang in there". I've thought about moving, but I don't want to do that either. I can't afford a private school. We're almost to the end of another school year and my daughter will be in middle school next year. It terrifies me that nothing has been done. I'm afraid that she is going to "get lost in the shuffle" and I'm the only one that cares enough to help her.

Your advice would be appreciated.

Thanks so much,

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