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

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From a special education mail list:

God blessed me with the opportunity to attend the Congressional Hearing on IDEA with a 24-hour notice! I encourage every child advocate and every parent to contact Congressman Burton's office with recommendations to improve IDEA implementation and enforcement. The record will remain open until March 15, 2001. Congressman Burton is deeply committed to this cause, as he has been personally touched by a child with disability, his grandson, Christian, who has autism. He related the struggles of his own daughter in obtaining educational services for his grandson. He has attended IEPs with his daughter and was shocked to find the recalcitrant system that we have all grown so accustomed too. He stated that if this happens to a child who has a Congressman for a grandfather, he could not even begin to imagine what is happening to other families and other children. His experience with the special education system is what motivated him to investigate the implementation and enforcement of IDEA.

Contact information is as follows:

Hon. Dan Burton, Chairman House of Representatives Committee on Government Reform 2157 Rayburn House Office Building Washington, D.C. 20515-6143 Attn. Ms. Beth Clay Tel. 202-225-5074 E-mail address: beth.clay@mail.house.gov

The following is my own personal impression and observations of the Congressional Hearing and my own opinions:

Congressman Dan Burton from Indiana, Chairman of the Government Reform Committee, opened the hearing, which was titled, "Special Education: Is IDEA Being Implemented as Congress Intended?" What follows are excerpts of his opening statement: .. Why is it that, when we have federal law that requires that every child receive a free and appropriate public education, many families are having to go to court to receive these services?. The committee received thousands of e-mails, telephone calls, letters and faxes from families, teachers, administrators, and organizations about the implementation of the Individuals with Disabilities Education Act (IDEA). Are teachers and administrators trained in the changes in the Federal laws regarding special education? Are families fully informed early in the process about their rights?

He quoted President Bush, "the federal role in education is not to serve the system. It is to serve the children," and stated that he was in 100% agreement with that statement. He also stated: . We repeatedly heard that parents do not want their children to be 'warehoused,' or placed in classes where they are not intellectually challenged. We repeatedly heard from the disability community and families about the need for accountability for schools that do not comply with the law." ".Families across the country do not feel that their schools are following the IDEA law. A majority of over 2,500 families we heard from had to fight for services. We repeatedly heard from families that the schools did not inform them of the programs available to their children or of their rights under the law. We also learned that families spend tens of thousands of dollars out-of-pocket to obtain educational services for their children, as well as to hire lawyers to fight for their children's educational needs. It was never Congressional intent that taxpayer dollars be spent on hiring attorneys to fight parents in long and expensive court battles that will keep children from getting services. The role of Special Education Directors, teachers, and administrators is to serve the children, not to serve the system. The new mantra at the Department of Education is that "No Child Be Left Behind.' It is very important that no child be left behind, including any child with a disability.. When Congress passed legislation to require a free and appropriate public education to all children with disabilities, we never envisioned that parents would have to fight for these services. We never envisioned that schools would refuse to accept the diagnosis of a doctor and then not evaluate a child for six months or a year delaying all services until the school evaluation is obtained. A six month delay can have a detrimental effect on the child for years. When Congress passed IDEA we never envisioned that schools would tell parents, 'if we provide it for your child, then we will have to provide it for everyone!' We repeated heard from families that schools used this as an excuse not to provide services. If the service is an appropriate service to meet the educational needs of a disabled child, any child with the same disability in the school should be offered access to that appropriate service.

Marca Bristo, Chairperson of the National Council on Disability, beautifully delivered the major findings and major recommendations of NCD's Back to School on Civil Rights report regarding the poor implementation of IDEA and the lack of enforcement actions. Back to School on Civil Rights was entered into the Congressional Record.

Patricia Guard, Acting Director, Office of Special Education Programs, U.S. Department of Education, testified. Congressman Burton interrupted her testimony reminding her that what she was stating was what IDEA law says and that Congress is fully aware of what IDEA says, that what they want to know is why is not being implemented and what needs to be done to improve it. He asked her for specific recommendations from OSEP, but OSEP was unable to provide any, aside from increase in funding. Ms. Guard indicated that she had to get back to the Committee with specific recommendations. It's hard for me to resist offering my editorials, so I'm not going to resist the temptation. for OSEP not to even have a set of recommendations to improve IDEA implementation and enforcement is so tragic that is almost comical!

For me, the absolute highlight of the hearing was the testimony of Melinda (Maloney) Baird, Esq. From Knoxville, Tennessee, now in private practice previously involved with the Weatherly Law Firm, followed by the testimony from Mr. Gary Mayerson, Esq. From New York, a parent attorney. I wish I would have had a video camera so that we could all relive the moment together. I will do my best to describe what I observed.

The following are excerpts from Ms. Baird's testimony: I am an attorney in private practice in Knoxville, Tennessee, and have been working in the field of special education law for almost sixteen years. My practice is devoted exclusively to the representation of school districts in special education matters. I formerly served as an attorney in the Office of Special Education Programs for the Tennessee Department of Education and as Associate Publisher for Education and Disability Publications for LRP Publications. Over the past twelve years, I have provided hundreds of workshops and in-service training seminars for thousands of teachers, administrators, and parents of students with disabilities.. For the past four-and-a-half years, I have represented school districts in Tennessee, Alabama, and Florida in litigation concerning the IDEA and Section 504 of the Rehabilitation Act of 1973. Despite the best efforts and good intentions of lawmakers, the paperwork burden for special education has increased rather than decreased. In my opinion and based on my experience, local school districts are doing an ADMIRABLE (emphasis added) job of providing appropriate special education and related services to these students, and are rising to the challenge of meeting the mandate and increasing expectations of the law.. I annually prepare a yearly summary of federal and state court decisions affecting special education, which I have attached for your information and review. I think it is remarkable that, on average, less than one hundred lawsuits are filed in federal and state court out of a total of more than six million students receiving special education and related services. The Committee members should remember that in each state there is a federally funded agency providing free or low-cost legal representation to parents of students with disabilities. Therefore, families of students with disabilities are able to initiate a legal action against their local school district either at no cost or low cost whenever their child's rights have been violated. Parents also have the option of filing a complaint with the Office for Civil Rights and their State Department of Education, and of requesting formal mediation at no cost to them.. The law provides a complex scheme of procedural rights and the availability of free or low-cost legal representation for parents of students with disabilities. I can testify that the parents I encounter are well aware of their legal rights and freely take advantage of the legal process. My husband is a retired educator with twenty-eight years of experience as a special education teacher and administrator. It would be wrong to assume that all complains filed against school districts are without merit. It would also be wrong to assume that all complaints filed against schools have merit. The fact that we have disputes between school districts and parents of children with disabilities is proof that the system is working, not proof that the system is flawed.

Then the hero of the day, Mr. Gary Mayerson, from New York, who by the way was borne and raised in Miami, Florida, provided the accurate information regarding the state of affairs regarding special education litigation. He stated: Unfortunately, while there apparently are enough lawyers and law firms prepared to work on a steady retainer basis for school districts (or the insurance companies which insure school districts), there are relatively few lawyers in the country who are ready, willing and able to represent children. The subject matter is complicated, the learning curve is steep, the pay is uncertain and erratic, and the risks of failure can be catastrophic to the child and the child's family. There clearly are easier ways to earn a living.

Mr. Mayerson included as Appendices to his written testimony, a seminar brochure entitled "Special Education and The Law, a private briefing designed for school board members, central office administrators, special education directors, etc." Page 2 of the Program agenda announced a session titled "Special Education for Early Childhood Autistic Students How to Avoid Parent Demands for Lovaas/Teach Methodologies," and also another session titled, "How to Avoid Liability in Lovaas Cases." Mr. Mayerson also attached a copy of "workshop" brochure from our esteemed LRP Publications tiled "Building a Blueprint from Defensible Autism Programs," with Melinda (Maloney) Baird as the workshop's presenter. He also testified to Ms. Baird's presentation in Tennessee back in November 2000, titled "The New Reauthorization Back into Hell?" We are all too familiar with these workshops and "private" conferences at taxpayers expense.

Congressman Burton and Congresswoman Maloney from New York did not find Ms. Baird's "catchy" titles amusing at all, to say the least. As one observed proper and posed Congressman Burton's increase in facial color, becoming redder by the second, Ms. Baird was asked several questions regarding Mr. Mayerson's appendices and testimony. Among the questions asked of Ms. Baird, was an explanation of how could she put on "private" conferences with taxpayer dollars designed to teach school people how to break the law and get away with it. OK, we can all relish the moment now... SMILE, SMILE, SMILE.. Of course, this refers to the famous LRP's "National Institute on Legal Issues of Educating Individuals with Disabilities," which caters to school boards and school board attorneys who attend these conferences at taxpayers expense to learn how to win against parents in court. Congresswoman Maloney from New York literally yelled at Ms. Baird, stating that this practice could not be legal and that she would get this under the Sunshine Law. Ms. Baird was not a happy camper.

At the end of the hearing, it was observed how Ms. Baird found refuge and comfort among her friends from OSEP, Ms. Patty Guard, Ms. Joleta Reynolds and Ms. Ruth Ryder, who were all there. Whose interest is OSEP protecting? Do we have any doubts left? How could anyone in their right mind expect that OSEP would ever enforce IDEA, much less sanction state education agencies that allow its local school districts to violate the law?

In conclusion, for the first time I feel confident that IDEA is getting the attention it deserves (THE CAT IS OUT OF THE BAG). Thank God for little boys and little girls like Christian, Congressman Burton's grandson, who through the miracle of their very own existence raise the level of awareness of those who are in a position to make a difference. What would the rest of us do without them?

Again, I encourage all parents and advocates for children with disabilities to make recommendations to improve IDEA. It is scary to hear the recommendations that I heard at the hearing coming from school people and from uninformed legislators. The school people complain bitterly about the burden of paperwork and about the discipline of children with disabilities. What they really mean to say is that paperwork makes them somewhat accountable and they just don't like that. They also stated that they miss the days when the parents "trust" them. We need to demand accountability, not necessarily through "paperwork" (I'm not interested in killing trees), but through technology (instead of paper and pencil tasks) and, of course, through measurable student outcomes.

Just wanted to drop you a line and tell you, GREAT SITE. Very encouraging collection of literature and information. I will forward this page to all of the families I work with. Thanks!

Sometimes things just happen (from news:alt.support.autism)

Hello to you all,

I've missed being here, but I have had a bad start to the year, and even now i'm struggling to cope each day, but there is something that has happened that is so wonderful I can't believe it and this is my reason for trying to get myself together.

My darling Daniel at last is a happy little boy. He wakes in the morning with a smile on his face. He happily gets ready for school and enjoys himself. He comes home and is still happy. Bed time and yes he will go to bed without crying.

He told me he feels happy and likes school. Every time I look at him now he is smiling. He doesn't get angry, he's not argumentative and most of all he doesn't tell me he wants to die anymore.

He has been this way now for 2 weeks. I could see the change in him gradually happening. I'm not sure what has done it and I don't know if it will last. But now I know what he is like when he is happy and that he can be happy there is so much more to be thankful for.

Every night I look at him sleeping and am so amazed at how peaceful he is now when asleep. When he's playing through the day he enjoys himself and laughs so much. He's busy a lot like he is trying to make up for lost time. He keeps saying I can't waste any time.

He is still autistic, he is still my beautiful boy, and he still needs me more than anyone does, but he is so HAPPY!!!!!!!!!!






Your website for autistic children, and the resources you provided are wonderful. However, the anger you start with is something you may want to modify. I understand that you are frustrated - this shows in your words. What we (as supporters and helpers of autistic children) long for is a positive approach. I would like to suggest to ixnay the poor attitude phrases and fill this page with love, faith and hope.

Hi, I am a Behavior Analyst and I was just surfing and came across your site, it is a wealth of knowledge, has wonderful links and tons of them. I applied you for spreading the word and helping others!!!


I just had to send this email, I was so moved by your story and I just stumbled on your web site by accident. I am the mother of a almost 3 year old daughter who was diagnosed originally in march o3 with sever delayed development. We recently received the diagnosis of pdd-autism spectrum disorder. We have been trying everything with * and have been very fortunate we have 30 hours of aba a week and we have filled it with about 15 hours so far. But I was really discouraged recently with the transition into pre school, how un trained and oblivious the teachers are to autism aba and any basic therapy skills to help these kids. After fighting NOT to place * in a self contained classroom, I had the horror of meeting the head of special education of our school district who informed me that there is no formal training for autism and that my child " wont learn through osmosis " therefore she does not need to be around typical kids. This was so disheartening for our family. The head of special education is not very special at all. Anyway I was just wondering if you had any advice for us because we are pretty confused and I believe time is of the essence.

Thank you for listening

I just wanted to let you know that your website is one of, if not THE best websites by parents of children with autism. It is informative and provides accurate information in a clear and easily understood manner. I am in the process of putting together a small information packet for parents of children who are newly diagnosed with autism in our clinic, and your site will be at the top of the list. I am so sorry that you had to work so long and hard to get your son the services that are legally mandated to be provided, unfortunately, it is a story I hear time and again. Best wishes to you and your family,

Richard, Your website is amazing. You have done an incredible job of putting my exact feelings into words on many issues (which relieves me of having to do this) . I am a parent of a 3.5 year old girl (actually we met 2 years ago in Worcester at the hearing over the sped law changes with Driscoll and I brought * with me- remember?). I am in the process of putting up a website mainly for sharing our story with friends and family. I was wondering if you would mind if I clipped some of your stuff and pasted it on my site ( I will of course credit you and provide a link to your site).

My daughter is still in a full time home-based program run by * (after significant legal fighting with our school district) . They provide 30 hours (well, 25 really) and I provide 5-10 hours more per week. She is not having a miraculous turnaround in her progress and it gets discouraging at times. Cognitively, she is way behind. Her biggest improvements have been in her behaviors (the only way anyone would know she has Autism is by what is lacking rather than by odd things she is doing). One- on- one her social connectedness is getting better but in a group she is still lost. She has been able to talk since she turned 2 but language is not progressing from labeling, and manding. She is not putting many words together (only things we taught her rotely). I am 100% immersed in her program and a firm believer in ABA, but I have been starting to get the feeling that maybe we are not going to get to where we had envisioned back 2 years ago when I diagnosed her. Because she began her ABA at such a young age and we quickly became well informed, we assumed she would be able to recover. In May she will have been doing this for 2 years. She is not even close to recovery. She is still over a year behind developmentally in most areas. So, now it is becoming harder to believe the possibility of recovery exists and I worry that this will affect the intensity of our intervention. I still persist with the knowledge that even if she remains disabled, she will go further if we push her further. It just doesn't seem fair that with all the work I expend on her program... We go back to Dr. * in March for her 3rd eval - this should be interesting (and painful).

Well, sorry to ramble on whining. I am actually feeling much more positive than I sound and I thank you, your website has re-inspired me. Despite everything I have to continually remind myself that we have much to be thankful for. Best,

Just a heartfelt thanks for your website and all the VERY USEFUL info. It's the only place I could find a national list of schools (and I've been searching a lot!)

A view from both sides of "the system" (from news:bit.listserv.autism) 

I'll preface this by saying that I'm a special ed. teacher who has been teaching special ed. for about 7 years. I've been a parent of child with PDD-NOS for only 23 months...

There's a little legal phrase that school district personnel bandy about called "Free and Appropriate Public Education" or FAPE. "Free and Appropriate" is sufficiently vague enough that districts can usually avoid giving a lot of 1:1 therapies and services as well as over the summer services. Many parents see private therapists in addition to the ones provides by the school, in order to fill those long summer gaps, which can really set a child back when they are already delayed and behind. It's an expensive proposition, I know.

It's an adventure learning about this from the other side of the desk.

From a teacher's perspective, the prospect of teaching autistic kids is one thing most teachers dread more than any other because it is seen as being so much more demanding than any other disability. The average burn-out rate for these teachers is 4x higher than other sp. ed. teachers (which is already quite high). This means that by the time your child (and mine) is in the 4th grade, you'll already have more experience with this than most of his/her teachers.

I find having concerned and involved parents like you infinitely more preferrable to those who don't care at all. But some of my colleagues do not share this view. They'd rather be left to their own counsel and their own ways of doing things. Those are the folks you'll have the hardest time with, because they'll actively avoid you, and you'll have a hard time getting ahold of them. You'll drive each other nuts.

I'm not sure why the school is dodging the full evaluation. Seems this would be necessary in order to establish his eligibility for services.

As one other poster said, you have the right to request an IEP meeting pretty much whenever you want. If you dog them enough, they'll give in just to get you out of their hair!

Get in touch with sp. ed coordinator at the county or district office and talk to them. They can often help move things along in a way that satisfies you and the school. But you probably won't get everything you want.

Mr. Saffran:

I was directed to your web site by a parent. It is most impressive, thank you for helping to get out such good information.

Thank you again,

*, Ph.D., B.C.B.A. President, * State Association for Behavior Analysis

Thanks Richard! Your website has been a great help to many of families including my own!

From a "Website review" of ABA Resources, by a special education teacher

Included in the site is an email address but no biography, nor are you led to additinal information about the author. In many ways it would be more interesting to have additional information about the author.... The site is not interactive (other than clicking on additional links). The parent (author) states that he is happy to answer questions & concerns through the email address provided. In this situation the parent is seen as the expert and this is clearly stated at the the beginning. Information is being presented from the experiences (and bias) of the parent.... The site is clear, straightforward and simple. In fact, in my opinion the site lacks animations, visuals and /or sounds.. The backgrounds are sparse and lack creativity. Clearly the author's intention is for the audience to focus on the information being represented with minimal distractions. The inference being that the parent wanted to get the inofrmation out to others as quick as possible.

Richard, WOW what a website. I have not had the opportunity to visit this site recently. WOW WOW WOW. Nice job. and thank you.

Dear Richard: 

I am trying to find an attorney to help us get reimbursement for our home program costs. We have had a program for 3 and 1/2 years, and I don't need to tell you how financially draining it has been. We live in the * City school district and they have refused to help, other than placing our son in a disgusting warehouse atmosphere and pretend to teach him. I am so happy for your family that things have gone well. Our son has done very well also, and we will continue to do whatever it takes to help him. Please let us know of where we might turn. Thnaks,

Dear Richard Saffran,

I encountered your "Another long posting from A & P" [*] on a message board when I was looking for some critical thinking on the Son-Rise Program. Most of your posting was on the locked doors, and your assessment of locked doors made a lot of sense to me. [* Note, I did not write that posting]

Because I work as a classroom aide with an autistic girl of 9, I've been looking up things on the web about autism. Hoping to learn more about the Son-Rise program, I sent for the Options Institute video, despite some gut sense that there was something wrong with that place. I decided to reserve final judgment until I learned more than the Options web site had told me.

The video was appalling. My impression was similar to your [*] observations, that they insist that just deciding to be happy about a problem was sufficient to overcome it, and that any "failures to be healed" were a failure of attitude only.

The program had all the earmarks of a slick advertising scheme to attract hurting people desparate enough to believe almost anything to find relief.

The people on the video were beaming with expressions of mindless joy typical of people who have relieved themselves of all critical thought and have agreed to cooperate with the program without asking questions.

When I saw that the program was endorsed by the ultimate guru of emotion-dismissal, Wayne Dyer, author of "Your Erroneous Zones," I let out a final groan and declared the Options Institute video fit for the trash.

Since little was said of the Son-Rise program itself, I still looked for some information on it. That's when I found your [*] comments.

What attracted me to the Son-Rise program in the first place was the emphasis on taking cues from the child herself and participating in avenues that seem comfortable for or meaningful to or delightful to the child, and using such things as possible springboards to help her learn ways to navigate in an often overwhelming world.

I instinctively do such things with this little girl. For example, she got a kick out of the word pistacchios in a book. She loves saying it. I bought pistacchios to use as counting and multiplication objects in math lessons that would otherwise be a strain for her. So we have fun with these props. I also cooperate with her wish to arrange objects certain ways between math problems rather than trying to prevent her from "wasting time." Not interfering with her wish to arrange objects in particular ways actually allows us more time. When she finishes, she says, "Ok, what's next?" or she'll start on the next problem on her own. We'd really waste time if we got into a tug-of-war over arranging objects. Besides, I certainly have lots of things in my life I like to have arranged in certain ways, so why can't she?

I think I'll abandon the Son-Rise search, although I may read the initial book, "Son-Rise," to see what their experience was. I'm willing to allow that they may have some valid insights to share based on that. But like so many contemporary how-to-heal-yourself writers, I think that they have gone beyond their original and true basis of insight and have become egotistic, self-appointed gurus on how everyone should live. Their catalogue even has an obnixous-looking offering on one's relationship with money.

I truly do not understand how they have come to fancy themselves experts on such a broad range of topics just because they had some inspired and successful insights on how to work with their child who, apparently, was not as "severely autistic" as they claim.

Dear sir, I found your webpage on tripod and found it fascinating and quite useful. Yuor explanation of ABA gives hope that this method will help my son. I have held out against aba up till now because of what was presented to me as the ONLY way being the Son Rise method. After researching their claims and looking into their adult interventions( my son was 16 when Options was firt brought to my attention)I could only feel that what they ewere telling people "was the best way" of treating autism actually amounted to brainwashing. 

When I was in the army I was told that such activity constituted a "crime against humanity" and would be punished severely. I could not, in good conscience, put my son through such treatment. The resources on your webpage and reasoned explanations give me new hope. 

Thank you!

hi Richard 

im from England and have an 8yr old son who at the age of 2 and a half yrs old started displaying typical autistic features lost use of speech, screaming, lining toys up walking round and round in circles, im sure you get the picture, i spent a lot of time working with him, talking to him, trying to get him to respond to me with sentences not yes or no or grunts, i would make him ask for a drink not just point or take my hand and place it on the cup it was very hard on both of us and lots and lots of screaming tantrums from him , it must of taking about 18mths before he had made major turns around when he started school he still had problems, he didnt know how to interact with the other kids he wanted to play with them but just stood on the side lines watching, he thought he could only have one friend ( a boy who attended the same pre-school as him and both would constantly fight and hit each other , but it was his "friend")and when that friend left the school and he had no one, and he would come home crying because no one would play with him and he couldnt understand why , i spent ages explaining how he had to approach the other kids ,how he had to make friends and how to do it, it took time, he also had speech problems and attended speech therapy up to he was 7. 

He is now almost 9 his teachers say they wish they could clone him he is so popular,he mixes well with his peers and older children, he plays for a local football team , he took his SAT`s at age 7 and got the level expected of a 11 yr old in maths, he reads avidly, he is very very cuddly he likes nothing better than to cuddle up with his mum to watch tv and always wants a kiss when he leaves me for school. he has a fantastic sense of humour ,to look at him now he is so difficult to associate this child with the one who would have screaming fits in his sleep who would roll to the edge of the room and bang his head against the wall if you tried to pick him up I have never heard of the ABA method but reading your pages can see it is virtually what i was doing with him. i found your pages very interesting and hope that this will be a comfort to parents who look at the child they have now and cannot comprehend that it can be any other way it can be, it takes a lot of hard work but when that child asks you for a cuddle it is worth it , i now work with autistic children and consider my child very very lucky to have recovered from it .

Dear Richard Saffran: Although I am the mother of an already 6 year old autistic and adorable boy, who has undergone all kinds of therapies (ABA, diets, vit, supplem, sensory integration, secretin, etc), I have at the end come to realize that if there is any hope, that is ABA, mostly. As a full time working mother, w a full time working husband (unfortunately usually away on business related trips), i had quit my job a few months ago to keep the family together. Today I went into the Internet to check on autism related information (best places to live where my child can have a chance), I was very pleased to see your web site, it is so good. I just wanted to thank you, and I am feeling more hopeful. I have a lot to keep on researching. I am planning to get back to work, but it will all depend on wether I can find the right place for my little boy. 

Thanks again.

Mr. Saffran,

On Thanksgiving, I wanted to thank you. About 1 year ago I came across your site while researching Autism treatment for my newly diagnosed 2 1/2 year old son. I sent an email to you asking whether you felt our son would benefit and you encouraged us to try ABA. We "scraped" our money together and after 9 months of treatment, a once non-verbal child can now make simple 3-4 word sentence requests appropriately and is using purposeful language. He knows his basic preschool skills ( colors, shapes, actions, over 300 labels etc.)- you get the picture! He is still 1 year behind in language but everywhere else, almost age appropriate. He even does appropriate imaginary play. Everyone is pleased with his progress -except of coarse the public schools. He even said "no fair!" the other day when I made him do something; very age appropriate for a 3 1/2 year old! So, thank you for having such an informative web page for parents like me who were discouraged from doing ABA and thank you for responding directly to my email. It is input from parents like you that have helped "awaken" our son. Sincerely, 

Given its widespread validity in the courts, I’m not sure I would classify ABA as an “unconventional” treatment approach anymore. Perhaps this requires a shift to the “conventional” column?

I must say, though, this is an incredible resource that you have pulled together and I applaud this as one of the most comprehensive sites I have seen. I have bookmarked it and I will pass it along.

Well done!

Hi Richard

thanks for wanting to share and give time to other parents. I am particularly interested in how you got the school to pay for ABA services. I have 3 students to work with my son 7 after school. We are using the ABLLS system. I pay for this, I would like to implement a totally home based program but I can't afford it, the schools simply will not embrace ABA and say we are not required to embrace any methodology. we live in *, Texas and no matter what George [W] Bush says about education in Texas it stinks. and like other parts of the country the special education stinks even more.

please provide any guidance

Dear Richard, I have just finished reading through your website and wish so much I had it as a resource three years ago when our family embarked on the autism journey! What you have put together is just wonderful, and is sure to help so many parents and therefore children. I wanted to quickly tell you about my son - he has just turned 6 this week and is a complete ABA success story as he is totally recovered and I owe this completely to "Let Me Hear Your Voice" which I stumbled across when he was jst diagnosed at age 3. In the country I lived in ABA would never be covered by insurance, so my mother and I spent 25 hours a week doing ABA ourselves (we both have psychology degrees - this helped!) and the progress was so rapid and so encouraging that we continued it for 6 months, then dropped back to around 12 hours a month. He had one hour of speech therapy a week, and constant ABA style teaching from us, on a casual basis. 

My son had never spoken a word (other than pure echolalia) until after his third birthday. He had never pointed, never requested, never communicated a need to me. Not once in three years. He had hardly noticed I was there. I used to always say if I dropped dead he would walk right over me to get his books. He read before he communicated. By his third birthday he could read almost anything (the White Pages was a favourite back then) but he couldn't request 'milk'. In fact, he used to gather the appropriate magnetic letters from the fridge and place them in my hand, such a MILK and I would have to put them on the table and try to spell out what he wanted. He actually found it easier to do that at 3.0 years than say 'milk', which he found impossible. 

Today, thanks to ABA, he is in a normal first grade class with a teacher who has no idea there was ever anything wrong. He is the youngest in the grade and is coping beautifully. He is empathetic, he is social (we have to take him to a birthday party almost every weekend!) he loves sport, reading, playing, showing off, fighting with his sisters, competing for his teacher's attention - all of the things that are so normal they bring tears to my eyes. I, too, will tell him of his autism. I will show him the videos of himself at 2 and 3 unable to respond to his own name. I will let him read Catherine Maurice's book and let him understand how proud we are of him - while every other 3 year old was out playing and watching TV and just being 3, he was stuck in a room with me doing drill after drill, working his little heart out. I am immensely proud of him and hope you can pass my story onto others to encourage them that recovery is possible. Get them early. Allow them no 'down' time. Do not allow autism in your door. And fly right into the eye of the storm - the best advice (other than Catherine Maurice) that I ever got. 

Best wishes to you and your family, and again, thankyou for this wonderful resource for the families out there.

Dear Mr. Saffran,

I am the mother of a four and a half year old boy who was diagnosed with Pervasive Development Disorder/Autism two years ago. Although the initial diagnoses lead to much heartache it ultimately led us to a sense of joy. There was finally a lable for my son and therefore a direction. I am proud to say that through ABA my son is currentley in his second year of attending a mainstream jewish day school. He attends school from 9:30-3:15/12:15 with a shadow in class the entire time. Our journey has been a bumpy yet incredible ride. What my husband and I have learned is amazing and we look forward to uncovering much more. Your web site has been helpful in that endeavor. Although you seem to have much on this topic I would be happy to share my insights with those who need it and be would be delighted to help in any way possible. I live in * . I look forward to hearing from you. 


Excerpt from a post to news:bit.listserv.autism 

My school district refused to allow ABA in home they would not pay for it. They claim to have their own DTT but when I asked what their curricullum was they said "we dont have to tell you that" and "it is up to the teacher depending on the circumstances of that day". I refused their DTT and went with "in home" ABA. I also refused their IEP, because they dont recognize autism as an "educational diagnosis", all children until age 7 (I think) fall under "early childhoood special ed" that means my son's IEP could essentially be the same as a child with downs syndrome or cerebal palsy. They also had as his "goals and benchmarks" such things as learning his colors which we told them he already knew, I guess they didnt believe me. They also had their speach therapist start PECS on him although he was completely verbal. This school district is unreal. 

Another fine example of their "education of parents rights" is when a federal and state funded organization offered to teach IEP, IDEA and transitioning to the parents, the director of special ed said she would allow it *Only* if she would determine the curriculum for this outside agency. Basically, the district wants to control the info to the parents about their childrens rights, so they can continue their "Status quo" of treating disabled children. As a side note that had a 6 year old autistic child arrested for lashing out, fully knowing he had behavioral problems. Im getting my child out of this district as soon as possible, we are going to Wisconsin which I hear is better than most states.

Im sorry your child had such experiences, I am still having to cope with my sons oppositional response to any therapy because of his ABA being messed up by untrained and the lack of time and funds for the therapy to continue as it needed to. When we first started the therapists were EXCELLENT well trained and motivated, now the funding is cut, the therapist to be, has to take the training with no pay and their training is down from 3 10 hour days to 2 6 hour days. Im so frustrated because he was doing so well until this big bump in the road, hopefully Wisconsin is better.

Richard, ... I really like what you are doing. To me, the best part of the web is pages you can actually use. Yours fits this category. Have a great day and may God bless you for your help to those with autism.

Dear Mrs and Mr. Saffran,

I have just finished reading most of your web site. It is wonderful - congratulations. I am doing some research to try to help a couple of close friends who live in Montevideo, Uruguay, and who have a 4-year old autistic son, a beautiful and affectionate boy called *.

From age 2 to 3 they went through the non-diagnostic hell that you know well. Since then they have been able to select the right professionals - trusting their own judgment, WWW research and against much "professional" advice - and implement an ABA-type program (40 hours a week on 1-on-1 plus mainstream kindergarden with a therapist, parent training, weekly evaluations etc) under the supervision of a specialist who flies once a month from Buenos Aires. Progress naturally followed.

But you have no idea how much harder it is to get this kind of advice in South America - most professionals here still consider Bettelheim as cutting edge, and 3-times-a-week sessions at the psychologist´s office as a valid therapy. I am now trying to interest a psychologist friend in Brasilia to get proper training and start the first ever ABA-type program here - not a distant backwater, but a 1,5 million people city and capital of Brazil!

If not for the web pages of people like you and ordering books from Amazon, we would still be in the dark ages. So thank you very, very much.

It is my conviction that all loving parents, siblings, therapists and caregivers of autistic people will one day be able to look our Creator in the eye and, whatever other flaws they may have had in their lives, say truthfully:

You were alone, and I kept You company. You were scared, and I encouraged You. You felt guilty, but I judged You not. You were desperate, and I gave You hope. You were neglected, and I fought for You. You were lost, and I helped You find Your way. You were sad, and I brought You joy. You loved me - and I loved You back.

God bless you and your son,

Beware the experts (from news:bit.listserv.autism)

Some of you may know me. My son Nick started ABA over the summer. He is high functioning, and his acedemic scores are way above his age level, however, he is agressive and has some aspegers traits---and full blown autistic traits as well. He is almost four years old. Last summer the school agreed after EIGHT MONTHS OF WAITING) to have him put in ABA. After only three weeks in ABA, we had a new little boy. After two months in 30 hours a week of ABA the results were almost phenomenal. No more agresssion, social intereation. It was a dream come true. Now, just a month ago we had another IEP and they said he only needs 10 hours of ABA per week, and since _They_ are the experts we agreed. Since then he has regresssed over a year. All of a sudden all the old behaviors are back ( self stims all day long, screams, asks for things by screaming, more screaming, violent)

When I told the school district this they said it must be MY fault because they don't see any of that while he is at school---therefore it does not exist. They see him two hours a day------OUr familyu spends the rest of the day with him and he is terrorizing us. We want him back to 40 hours a week of ABA, but the cheapass school district 1. has never seen an autistic with such a high IQ, so they don't know how to deal with it and 2. they are just too cheap and stupid to give my son what I know he needs. His abbls test showed him way above the norm on acedemic skills, and that's the only thing they world with, I guess. I don't know.

But-----I really need to find a way to force SOMEONE to give the treatment my child needs Help?

Richard, i just read your article, as I watch my 4yr old son sleep. i am sure you get, alot of emails. i wanted to call you but, i live in *, and its late. I am about to attend IEP meeting with school Board in Oct. My son is PPD, and he attends a daycare, the schoolboard provides him with speech twice a week and a special instructor. I feel this is not enough speech, he just started getting speech a year ago .They stop speech in the summer. They keep telling me he is doing great. I do not agree when I told them last year he needed more speech. They told me he didnot meet the guidelines. My son cannot even say his own name on his on! Plus this past summer he received no speech. Now I am paying for private speech every other week. Very expensive. So this is where I need help, in Oct. they want to have another IEP, I want the most for my son. He is on a small dosage of ritlan because they need him to focus on daily tasks at daycare. (he loves it there!). Could you help me find out what my rights are for my son. I can't seem to get a straight answer from schoolboard. Also could you recommend maybe someone to help us teach him. I heard there is special clinic in Texas? I have alot of questions to ask someone but, Neuog. (just said he won't have many friends etc.) Didn't tell me where to go? My sons loves other children, but they lose interest in him, when they cannot understand him. He also sees a pysch. she just asks hows he doing, blah, blah. Never tells me how to help him learn. He is on a small dosage of ritaln, because he is so hyper, he was unable to still long enough for anyone to work with him. Since hes on med. his temper, and language has improved. Although he is still very hyper! I know this letter is very long and I am sorry, but I don't know where to turn. We also so DR. *'s, partner, they wanted to try a bunch of vitamins. I cannot put him thru 12 vit. a day. right now. God i am going on, on. Its late. Just please tell me any info. thanks he is my only son.

Dear Mr. Saffran:

I just finished reading the documents from your web site. Actually I am not really sure how I even ended up there - not quite internet saavy yet.

Our son was just diagnosed - finally - with autism. He sounds exactly like your son. * is very bright and it really has been his undoing as well as his savior. Because of his intelligence he was just diagnosed at age 3 1/2. We have been questioning since he was 18 months old.

Anyway I can't tell you how overwhelmed we feel but I guess I don't have to. YOu obviously know. Your information was so well organized that it made it easy to figure out. We just started and frankly I really don't know where to start. We are involved with a Dr. who specializes or treats autism with ABA. As all other parents we are not sure how we will ever implement and/or pay for it.

I just wanted to write and thank you as I cried all weekend after the diagnosis and then decided this morning that crying was not going to help *. So I got on the internet and found your information. Its the first time I felt like I may have some control over what is happening to * and his life. Thank you.

After we get going I will write again and let you know of *'s progress. As I said he sounds so much like your son. I only hope that we will have as much success as you did.


Just wanted to let you know that we are still just plugging along. I can't believe how difficult each step is. Every time I think I take 1 step forward I end up 10 back. This is not easy for a Type A controlling personality such as myself.

Actually we are moving along. We decided upon the Lovaas clinic out of N.J. We are waiting for approval. Our insurance is still paying. We have pulled some strings (actually lucked out and knew someone in high places) and think we may get the professional services covered. We just hired an attorney to represent us for the school issue.

I decided that my energies need to be focused on * and my family. We figured we would hire (second mortgage time) someone from the beginning to deal with the crap that I know is coming.

I found a family near me that is using the Lovaas program and is having some success. Their daughter is progressing and they are pleased. They have been quite a comfort and source of local info.

I can't believe the number of families out there who do nothing. I have met two here in my town that are following what the school provides - special needs pre-school with 8 special needs kids and four community kids, one teacher and two aides. What bullshit. Their kids have been in the program for three years and still have not spoken more than three words. How sad that they believe that is what is best. I had one mom tell me that I need to lower my expectations for * and learn to deal with his limitations. Yes one day maybe I will have to do that. Obviously I pray that day will never come but I am not naive - I know the odds. I refuse to deal with his limitations until I give him the chance to prove himself. I refuse to lower my expectations until he cannot jump the high bar. He is a fighter. He lived through * at four weeks of age, he has been diagnosed with * (it took me two weeks to learn to pronounce that one!) , he has multiple severe food allergies, and I mean allergic to milk, egg, soy wheat, corn, peanuts, tree nuts, beef , legumes etc etc etc. The kid is an amazing thriving surviving machine!!!!!!!!!!!!!! ...

Anyway, I just wanted to let you know what was up. I hope that you guys are well. I feel as if I know you as I spill my guts to you! I truly believe you are a good person. Your website was my first link to hope. I will always remember that and thank you for that. You are doing a good thing. ...

I will keep you and your family in my prayers. I will keep in touch.


Hello' I just came across your web page and thought that I'd write you in hopes that you could help me find where to turn.

I am the mother of a 11 year old son * who has multiple disabilities such as-adhd-odd-anxiety-depression-bipolar-visual and auditory processing delays-dyslexia-and a IQ of 73 which they tell me is borderline mentally retarded.

*'s been in 5 different schools with his IEP, each school promises that they can handle him and get him to learn- but after a short time they basically tell me it's not working out and then I feel I have to find other placement. The last several months * has been in what the district say's is the last option for him but the best placement- I beg to differ. *'s in a behavioral school for children whom are not making it anywhere else- and since he's been placed there his behavior has gotten extremely worse in the sense that this school allows the children to run from the program-and leave the school-but they have 15 minutes to come back without punishment. not what I want for my child..safety is the first thing that comes to my mind! I'm don't disagree that my son has behavioral concerns, but I don't see his placement helping him in any way,shape or form, and I have been told that the placement will not help him because of multiple disabilities-basically saying that my son does not choose to be this way but rather because of his disabilities is why he's acting this way. Another issue is in sept.2000 my son will be going into 6th grade although he is only at a 1st and 2nd grade level. * is restrained daily by school and placed into a small room which the door is locked- and a month ago during summer school- was actually restrained by two people and ended up with a huge bruise mark on his arm, when I talked to the summer school staff they denyed it and basically dropped the issue. But for me it is very hard as a mother of a special child such as *- to send him out the door everyday to a place where he's suppose to be able to go and get a FREE APPROPIATE EDUCATION- and be TREATED FAIRLY- and have to deal with the same things day in and day out and I feel like there is nothing I can do about it.

I have tried everything that I could think of to find another placement for him- but the school district says *'s only borderline mentally retarded so therefore he doesn't qualify for other programs. And regular schools say they don't have the funding or professionals to handle *. I've even tried to Homeschool *, which was very difficult because I to am a very low income single mother of three and I had to spend over 150.00 on books from Kmart to start * out at the first grade level and try to bring him up from there. And when I have had jobs..school was calling telling me to come get * that they were dismissing him or they'd call several times in one day because of problems with *. Everyday I hear from school by phone regarding my child.

Do you have any suggestions on what I can do or who can help me?

Many people have told me to hire an attorney but I don't have the money.


Dear Richard, I read you page on PDD frequently. I have a son that at age 3.3 years old was diagnosed as having pdd. As your son, he was also functioning about one year behind his peers. I was devasted when I knew about his disability, since I thought he had ADHD (I knew nothing about autism). The school district (which were the people that first made the diagnosis) recommended us placement at one of the public schools that offered special education and 1.5 hours a week of group speech therapy. They told me: "there is no cure for pdd. If people offer you expensive treatment, do not believe them". I did research on the internet and found the books by C. Maurice, which you know very well about. I accepted initially the offer from the school district and took him in the first day to the special education class. It was one of the biggest disappointments of my life. That was just babysitting. My son would go downhill fast. He would learn the bad behavior that I saw in other children. I removed him immediately from there and kept him in the Montessori school that he was attending. I decided myself to be his therapist and not fight with the school district to fund an one-to-one ABA therapist. I did ABA with him, for several hours a day. I would not miss any opportunity during the day to teach him something. He is now 4.2 years old and achieved normal levels of functioning. He made an extraordinary progress. There is nothing of autistic in him anymore. He had for several months the speech therapy offered by the school district, but that thing is just a scratch on the surface. I claim his recovered to myself, and the pioneers of ABA. And of course, I will always be greatful to C. Maurice. Thanks for writing such a nice page.

Hi There

What an amazing website!!! thank you!

I have only recently become aware of all the information regarding Autism as all the specialists in this country have been telling me for the last two years that:- I musn't put labels on my child, that he is not Autistic, that I should just wait and see, etc etc etc.

He is now two and a half and after doing research myself through books and the internet I am shocked to see how clearly * fits in on the autistic spectrum.

I have him on the diet, dietry supplements and at physio, but she herself has told me that she has not had much experience with Autism. In fact the Autism society in this country have not even heard of some of the treatments available or PROGRAMS such as ABA!!!!!

I have been to hell and back over the last two years trying to help my son. Now that I know what I am dealing with I can not afford to wait any longer!!!!!!! I would like to find out as much about ABA as possible but more importantly I would need the best material in terms of full curriculum, in other words a practical "how too". Yuo make not of "Behavioral Intervention for young children with Autism" is this the best book to teach me how to teach *??? you also mention " let me hear your voice" What would you suggest in terms of THE MOST EFFECTIVE BOOK

Also I would love to join a support group, you make mention of the ME-List... how do I get onto that list???

Thank you for taking the time for my letter, I look forward to hearing from you

Love from *

Hello. My son was diagnosed with PDD NOS (mild to moderate autistic tendencies) 1 1/2 years ago, and due to the small area that I live in, it has been dificult to find adequate information, and or resources. I just wanted to thank you for providing help and info for people like myself.

It takes a lot more than the right label to make a good program (from news:bit.listserv.autism)


Our son recently received his IEP ...not what we were looking for (our son is diagnosed as autistic) . It was determined that he needs 30 hrs. of "ABA type" of therapy (although ABA is not mentioned in the IEP they did not hesitate to imply that their program is based on ABA). I visited the program offered by the school system - there were probably about seven kids +, most of whom were seated one to one with a "ABA type" specialist, separated by thin bed sheets - then there were other kids running around kicking and hitting each other. I know we're only allowed to ask for the type of education that is "appropriate" rather than best for our children, but I do have a problem with this picture.

I'm new at this -so please bear with me...From what I've read, from what I've seen, and from what I've learned from other parents in the same boat, I've become a true believer of ABA Lovaas therapy (not Lovaas type or Lovaas inspired). With that I mean ABA at home - the school system seems to believe that a room full of autistic children = inclusion. If my son becomes ready to learn from those around him I'd rather he'd not learn how to pull hair or kick people, and honestly the place just seemed like a very bad place for a child to learn. But that's that....

I don't think that we're going to go to due process...Don't need to waste time.

I'm in a position, work-wise, where I able to move.

So my question to the floor is: Does anyone know of an ABA friendly school system? Preferably in the Northeast (NY, NJ, CT, MA).

Also - If I end up paying out of pocket - can any of you who've gone through this please give me some tips? I've heard cost ranges from 30 to 60k per year.

Thanks to anyone who'll help, John

And this reply...

John, please try not to pay out of your pocket. I had no clue what to do in the beginning- I did not belong to any support groups. I was in it alone and a phone call got the ball rolling. I am in New Jersey and I called COSAC and SPAn. I learned my educatiional rights, made tons of calls, taped every IEP meeting which was crucial because they said some pretty stupid things, did alot of crying, then got the nerve to fight. Not only did they have to pay for my son's outside evaluation, withthe help of a great, REASONABLE lawyer, they have to pay for 1, possibly 2 years[since they wasted 1 year of my son's life in that school] of in home ABA. In 1 month, I cannot believe what these people had accomplished with him. Please, get yourself an aggressive special ed lawyer- WE DID NOT HAVE TO GO TO DUE PROCESS because I had so much info against them that the judge just OK it. Be aggressive, cry, yell, but then have this vision of your child trying to hang from a cliff with1 finger and the district is stepping on it. It can be done- just prepare yourself that when you do win, you will experience an invasion in your house-NO PRIVACY, but who cares! When you see your child connecting and being proud of himself, it's worth every bit !! Good Luck! Keep in touch, Michelle

This is the best web-site I have found. Loaded with a lot of great stuff. I have been on your site for 3 hours!

Thanks for taking the time to support others and help to maintain our hope!

Hello, I read your heartfelt letter and I relate to everything you mentioned, yet I am coming from a different place. I am an assistant in a public school self-contained classroom, but my supervising teacher spent most of her years in a private special education school. I have my degree in Sociology and I also have a professional * business. So, instead of seeing public school education from the view of those with many years of teacher education classes, I see it more like an observer of society.

As you know, Asperger's and some of the other classifications have only been defined in the past few years. I was employed when Asperger's was defined. I was lucky enough to attend the same conferences as my supervisors and it was all very new to us at the same time.

Our class room behavior programs already existed because of my supervisor's background. When she came to our school the first year, we were starting up a Communication Handicapped class. You should have seen the principal's eyes and mouth pop open when she implemented the necessary steps to gain control. We had a very challenging class, several in diapers, two with seizures, one very aggressive, etc. She knew what to do because she had come from a private school but the principal, the regular Ed teachers and myself were horrified. Ten years later, her reputation as an effective teacher has spread and we have out of district parents begging to come to our class.

The problem is this, the public school has academic goals that out weigh behavorial goals. It also has a somewhat sheltered and naive view of the world. Many special education teachers are trained to teach basic skills to children with learning disabilities yet have no ideas on behavioral problems. These problems frustrate them to no end. They need to given constant updates on new methods of behavorial interventions, the same kind used in private schools. These teachers, along with the assistants, need to leave the school for this training, not just have a consultant come in. This type of intervention immediately puts them on the defensive and they refuse to be part of it. I have seen it in some other classrooms.

I will never forget when my supervising teacher tried to teach me how to do discreet trials while she was at the same trying to teach the rest of the class effectively. It was impossible and I disliked it. DT seemed a cruel and boring method (to me) and I certainly felt underpaid ($11,000), and overworked to be doing this and changing diapers, watching for seizures, etc. Now I understand the point of discreet trials but it is still not an option in a classroom with eight students of different needs, one teacher, one assistant, going out for speech, OT, PE, music etc. I have stuck with my job though and have certainly learned a lot, including how you must feel as a parent.

I have also become very interested in one student who has Asperger's Syndrome and he has inspired me to collaborate on a book of my photographs with text from two very famous Asperger experts. I am sure you will hear about it within a year.

Thanks for letting me sound off. I think my point in writing is to remark that generally the public school is a great place for learning and socializing once the child's behavior is under control. At this point, much of these successful behavorial methods are alien to the teachers and the administration. There is a great need to provide more teacher training on their part. Many teachers are programmed to run their class the same way every year and are taken back when faced with challenging or odd behavior. Our school is exceptional in that it's goal now is differentiated teaching/learning, a method made popular by Jackie Fife. We also have staff members who take it upon themselves to inform the mainstream teachers about autism.

One idea is to have the public school special education teachers and assistants spend one paid week in the summer at a private special education center. In addition to that, the entire public school staff, including music, art and PE teachers, should be made aware of these new definitions and classifications and methods. Let me tell you, they do not know what to do when they meet a student success needs specific behavioral methods that are beyond their college training.

That will open their eyes.

Well, now that I have sounded off, I want to commend you on your dedication and perseverance. You did the right thing. At the time, you had done so much research that you probably knew more about your son's needs than your child's teachers knew.

Yours Truly,

Thanks for the great resources you have provided on ABA! A lot of people are benefiting from your work! Your site is a great support for parents and teachers.

U* graduate student
Special Educator

What an amazing website you have! I am currently an ABA Therapist at * and am very interested in seeking out further education to become an advocate for families of children with autism. Specifically, I would like to help formulate public policy that makes ABA services more readibly available to families everywhere. I was wondering if you could give me suggestions on what type of degree to seek and where is a good place to receive it. Ideally, I would like to stay in * since many great ABA service providers are located here. Thank you for any information you could provide me with and thanks for all that you do,

Choose: your budget, or a child's future (from news:bit.listserv.autism) 

My wife and i always wonder about whether the grass is greener in other states regarding education and children with Autism. Maryland seems to be ahead of some states but it seems that the school systems react to parents demands for in home ABA or full time qualified aids (shadows) in classrooms by developing pseudo programs that just meet a requirement that stands up in court but really isn't that effective.

My guess is that Wisconsin, Minnesota, Indiana, New Jersey, and California may top the list. What is your opinion?


I had to send a message and thank you for your excellent webpage! I have spent COUNTLESS hours online having little luck finding ALL the resources you have LINKED on your site. Thank you, very sincerely, for helping pave the way for a smoother ride down a rough road! All the best to you & your family.

Richard, your web site is excellent.

Our daughter is * years 2 months and we too have been struggling for over two years accumulating services. We have had her in an inclusive pre-school with itinerant services.

We are getting ready for next year and have the opportunity to move her into kindergarten or keep her in preschool. We are leaning towards kindergarten in a high functioning PDD support classroom as you have described. The school system will not let us preview the classrooms prior to our IEP meeting. What do you think about that? They insist on there own evaluation prior to the meeting and are ignorant of the 2 years of comprehensive evaluations performed by our intermediate unit.

You cited 10 to 40 hours of ABA in the home. Can this be accomplished at the school as well. I can't see why it wouldn't. Our daughter is currently getting 4 hours/week with another 3 of speech therapy.

She has shown good progress but is still delayed by probably 2 years in some areas. Her difficulty seems to be with abstract thought and recall. She is intelligent but scored low (59)on a recent IQ test last month. One pyschologist told us that children can not be effectively tested for IQ until they were closer to 7 or 8. Any thoughts on that? Some of her problems during evaluations is compliance with the examiner!

Do you have any suggestions for our IEP meeting in the following respects: 1) Getting all the services our daughter requires 2) Getting the school system to do it voluntarily, they haven't been forthcoming with available programs 3) Moving the child out of our school district to where a better program exists 4) Coping with the daily stress and anxiety that all this creates!!!! Did I mention that we also have a * year old daughter and a son due in July.

Thanks in advance for the web-site, the wealth of information, and a reply if you have the time!


Is this typical or unusual? How do you know? (from news:bit.listserv.autism) 

My 12 year old daughter is autistic and non verbal, and our school district experiences have been hell, but that's another story. She has had her second total behavioral meltdown after 10 days in a full day program. I'm being told just bring her in, no don't stay, we'll take care of things, she's just being manipulative because she doesn't want to work.....yada yada yada. The class is multiply handicapped, 11 students, she has a one on one aide who's not trained and the behavioral level in the class is pretty severe. She has bitten her ams and hands until I'm fairly sure the scars are permanent, she's back to scratching her face and she's started hitting her head with her fist. The behaviors are definitely tied to her NOT wanting to go to the school. During a one on one program and at home. she was pretty happy, and responsive with basically "normal" pissy obstinate behavior. She can't learn anything like this, if things keep escalating I'm sure she'll be in a hospital soon for some sort of a staph infection because he looks like hell. She rampaged all day yesterday, at home and I physically couldn't get her out the door. She alternated between raging and sitting and staring blankly. Since I'm expecting the predictable phone calls calling me an interfering parent who won't let the schools do their work, and on an on, I needed to articulate to someone what I think happens with some of our kids - I think she is trapped in a world where she has difficulty understanding what's going on around her, and what's expected of her. I think she's terrified because she can't make anyone understand what she wants to say. I think she's dealing with nervous system screw-ups that make the world very uncomfortable, and I think she's scared to death to go out of what she see's her only safe place. I'm also afraid there is a child "in there" with normal intelligence who is suffering. I think if she's forced to conform in school she's going to totally withdraw inside of herself, shutting down contact with the outside world in order to protect her self. I think the autistic behaviors are her way of trying to cope with the confusing overwhelming sensations coming into her head that her nervous system can't make sense of. I think if I don't allow her to deal with the world in the way she has to, we are going to lose her permanently. I am sitting here crying and really needing to know.....am I wrong? And if I'm not what the hell can I do?

Dear Mr. Saffran,

If a psychologist stated and also testified in a due process hearing that DATA is not important to the educational program of an autistic child whose program is based on Applied Behavioral Analysis, would this be in agreement with other professionals in the field of psychology?

I believe that my son's school psychologist who has stated that data is not important is saying this because the school has taken no data in the ABA program in 6 months. They have done the same 3 drills for 6 months also.

This psychologist has not testified yet, the Due Process Hearing is on Thursday, but I believe he will testify that the lack of data has no impact on the child's ABA program. I believe he is saying this to protect the school. Is this considered unprofessional conduct? I am desperate to help my son, and I will appreciate greatly any answers you can give me.

Thank you for your time.


Read your letter to the School committee. Know you're not naive but bluntly, school districts don't care about your research on Autism. Our school district superintendent told a meeting several years ago he did not want to have a good special ed department. Then students would be flocking to the district, seeking services they could not provide. So they indoctrinate the administrators...so called therapists, teachers etc into believing in a mediocre program that can't possibly help children with Autism/PDD. Just be happy knowing your child will be funded privately. We cannot afford such funding....so the promise of "the pursuit of happiness," supposedly guaranteed in the preamble to our Constitution for all Americans will end up being a mere fantasy to our child.


You have assembled an impressive list of references and are to be commended for it. Please remember that in the literature, there is always a percentage of children who do not respond to ABA and that the studies which support it often do not control for many of the variables that may be therapeutic (interaction and affection, sensory input, etc...). It does not work for every child as Dr. Lovaas and other B. Mod experts will attest. As a father of child who is so severely impaired that ABA has not (so far) been very helpful, I sometimes tire of the sanctimonious tone taken by parents for whom it has (My son * is 9 y/o, has very little language, significant motor impairment, is still not potty trained, does not sleep through the night, and still gets violent at times. Our attempt at a home ABA program for several months at age 3-4 was a complete disaster). I think you have avoided this self righteousness for the most part which I appreciate(although I do think you are overly optimistic about ABA's benefits). This is a complicated disorder and different approaches may be needed for different children. I am glad that you added the section on other treatments toward the end of you page. I know it takes a lot of work to do the web page and I hope I have not sounded too critical. I encourage you to keep up the good work.

Dear Richard,

I discovered your site whilst surfing for more info on autism. it is more comprehensive than any site I have found so far!! I have a little boy of * who could be autistic. At first, he was diagnosed a being mentally retatrded and suffering from epilepsy. They placed him on * but, due to the side effects, I stopped it. Since then, he thinks clearer, etc. Yesterday, I took him to someone who runs the * programme here in South Africa who advised me that he is on the autism spectrum. She also runs an ABA programme. I need as much info as possible on this. Can you help me as the knowledge for the treatment needed for autism here in our country, is very poor.


Hi Richard - Your web site is so helpful. We live in *. We are trying to get funding for a home bases ABA program for our son with PDD-NOS. They school has said that they support ABA but not for kids like our son (b/c it is on mild end of spectrum). Children's wants him to have 10 hours of ABA, 3 hours of preschool (with typically devloping children) 5 days a week, year-round as well as individual speech and OT 3x times a week. School is only offering a self-contained preschool for 9 hours a week and an even shorter summer program. I saw that you have information on many * towns, including *. Do you know of towns that support ABA for "higher functioning" kids with PDD NOS? Any tips, research, advise is so appreciated. For us it seems getting the diagnosis, as terrible as it is, has been the easy part. Many thanks!

If I had a nickel for every letter like this, I'd be writing from a villa near Sienna...(from a special education mailing list)

We have a 4 year old son diagnosed with PDD/NOS. We are frustrated with the lack of support, planning, and services in our town. We would like to hear from others who may have experienced a more progressive educational system. We are considering relocating, however we need information about special education programs. We are especially interested in hearing if there are any communities that have preschool and kindergarten programs for children with PDD. Any information you can give us will be greatly appreciated!

I really enjoyed (?) reading your letter regarding receiving (?) services for Alexander. We live in *, close to *. Our story totally parallels your experience. Only the school originally agreed to provide 20 hours ABA with an excellent consultant. Only the therapists were ignorant, highly unmotivated aides with no educational background. They spent over a year reinforcing negative behaviors and game playing (our son amuses himself by hiding his skills until he is ready to give us a quick glimpse of his actual knowledge, then quickly withdrawing into a feigned pretense "I'm not sure what you want" demeanor. We finally pulled him from the program altogether when the TEAM made him work for four hours straight and denied him his breakfast snack and lunch. (They did no compliance sittings--and the two therapists that normally worked at 2 hr. intervals took turns switching every 5 min., because they felt that it was too hard to work for 2 hrs straight--of course, we felt this set him up for failure. He was totally defeated that day.) Now we are in the unfortunate position of trying to provide his therapy at our own cost. Though that is not nearly as difficult as trying to "break" him through these games that he plays. He's very bright, but you'd never know it by his progress. It has always been inconsistent. Generally, he worked for us at home, but not for the people at school. Though now, he is so fond of withdrawing into his games that he will not work consistent with us at home. We've tried tearing down his programs and adding them back as we gain compliance. We haven't got very far yet. Any suggestions?

Mr. Saffran, your webpage is just what I have been looking for. I am a 19 year old college student interested in teaching applied behavior analysis. I have wanted to teach autistic children since I was eleven, and have been surprised at the lack of knowledge about behavior therapies. I live in *, and am trying to find out what type of degree I need and where the closest place where I can get trained is. I don't believe there are any in *. I currently volunteer at a preschool that has two autistic children. As far as I know, their only therapy is speech. I'm sure that they and many others would beneift from behavioral therapy. If you have any advice on how to start a program after I have been trained, I would greatly appreciate it. Sincerely,

Dear Mr. Saffran, Although I could not attend the hearing [Massachusetts Education Committee] yesterday (my 3 yr old's school is shut down this week for school renovations!), I desparately wanted to attend. I too have a * yr old son with autism/pdd. We too went through the public system (a collaborative) after early intervention. He too regressed due to a lousy setup and inexperienced teacher in ABA. Thankfully, our school district (* School District) representative allowed us to pursue a more ideal school environment, namely * home program, followed by enrollment in *. He is doing very well, however I doubt this would have been possible without "maximum feasible benefit". My husband and I pray for *'s continued gains which hopefully will continue when he returns to his district classroom, but who knows. I feel for your situation and those of us with autistic parents know how hard daily living is not to mention your dreams and goals for your child. I hope to attend a future hearing. Such an important issue.

I was very impressed with all the information you provided on your web page! I commend you for all the work and time you spent on this, for other people to relate to. My son just turned * last month. He was diagnosed with autism at 2 1/2 from *, thanks to the referral from our second pediatrician.

Our first just kept telling me how boys just develop slower than girls! It made me sick how he wouldn't listen to my concerns and how he told me to stop comparing him to his twin sister. Anyway, that's when I think God, was sending me a message to seek out the pediatrician I originally wanted, but couldn't get because he had no openings for new patients. Anyway, *'s first IEP was (excuse my language) hell! It was terrible in every way! The manipulation and intimidation was overwhelming! But thanks to our advocate and our diagnosis from *, they met all our needs. That is not without an agreement to another independent assessment. The school is set that he is MR. That's a joke. Anyway, * goes to a private school for 3 hours a week and has playdates 3 times a week at a preschool nearby (which the private school pays for at the moment). He also gets DT 10 hrs. a week. He has been getting DT for 7 months now and I can't tell you the progress he has made in the last couple months, it's amazing. His DT was agreed to 6 months with review. We filed a compliance complaint against the district because they did not provide the DT till 3 months after the IEP! It was excuse after excuse (not to mention a hang up from them). Until the compliance complaint, we finally received the services! We requested a meeting with the district this month to update and modify *'s IEP. They did the usual of sending the formal notice with names of parties attending, but they happened to leave out the DT therapist! I questioned the district on this because he is part of *'s programming and the district does pay him for his services, but the response I got was that, if I wanted to invite him than I could! This bothered me because it's already clear how they don't want to provide the services anymore. We are ready to ask for an extra 10 hours (making it 20) too because he is doing so well and making such progress. I am just so fed up with the district and the games. I know that I have nothing to worry about because we have proof of his progress. I didn't want to ask for more DT hours at the first IEP because I didn't know how * would handle school and DT. I mean every kids different with there learning abilities and I didn't know if this program would work or not. But now he is ready for more now. Sorry to go on and on, but I guess I am just disgusted with the special education process. Just to let you know my son * does not speak yet...he has icons (about 50+) and is verbalizing more and more. He really tries to say what he wants and I am proud of him. He has come a long way. He loves the park, music, videos, books, tickles and hugs. He is now at least acknowledging his twin sister too. It really is wonderful to see the progress and behavior changes. We love our son and feel very blessed with this life. He is a happy boy! And we are a happy family. Thanks, for listening.

Hello- My name is * and I have a * year old son that has been recieving ABA therapy since October of 1999, sorta. My problem comes with finding people who are trained in giving such therapy. My immediate family and myself have been trained (still paying on the $1500 training session, but well worth it). My son has shown great improvement. Not so much in speech (he has a 8 word verbal vocab with over 100 word signing language vocab) but in behavior, my life has changed with this therapy, and so has my son's. This has been a God sent since we have been fighting for something to be done because we knew he had a problem since he had been 13 months old, we tried medications, strike three they were out. My son is not a lab rat. He has been diagnosed with Landaue Kleffner's Syndrome, verbal apraxia, expressive aphagia, tactily defensive, PDD (persuasive developmental disorder), ODD, ADHD--I think that is it (thought there was eight).He is my first and only child and since he has become difficult to handle at the age of 13 months, I am use to him, so most of the time his behavior is not hard to handle for me. My husband has just recently came to grasp with all of this about a year ago, he was very optomistic that our som would be talking by his birthday, then by Christmas, then is was by Easter so on. I was that way to until three years ago when I took him for a speech evaulation, neurologist, psychiatrist, clinics, you name it, I thought there was finally nothing more I could do for my son (allready recieving speech, OT, PT (privately and at his preschool) going to an Autism clinic every other month, going to a special needs preschool) until ABA came into our lives. Thank GOD. Enough babl about us, my question to you is how can I get some applications from the state government for non-aide providers to come to my home to provide therapy for my son. He all ready has been accepted since OCt. of 99 for 37 hours of Respite a week, I am currently getting between 0-8 hours a week. Actaullt he has nod recieved any therapy for four weeks now because one of his therapist always has an excuse (she must have a book). I have recruited my one people but if I have coverage for the state to pay instead of out of my pocket, I want to take it. My son has been accepted for $2200 a month for Respite and I think he uses about $250 of that what a waste and this month NONE. I have the 1-800 number to ask for an application but I have four people plus myself calling constantly ( I mean that) and the phones are ALWAYS busy. I have looked on the net, made phone calls and I am getting now where. I need a break from my son, whom I have been with 24 hours a day seven days a week non-stop except for going to work for five hours on every sunday and I am ready to pull my hair out. By the way he is sleeping now but I expect him to wake by midnight. He is very high wired, not stop all day, no naps any more , unfortualely. He does go to preschool on Mon, Tues and Wed but I have been unable to recover and build my self up for the rest of the week. My husband tries so hard to give me breaks but he works 2nd shift, and it seems the further into the day we go the more active my son gets and I can hardly make it to 9 o'clock (some times early sometimes later) I usually let him tell me when he wants to go to bed cause I can not handle anymore argument by this late at night. Let me now what you can if anything. Thanks for letting me vent.

I'm *, mom to *, atypical rett syndrome (autism spectrum).

To make a long story short, we have had some success with ABA/discrete trial with helping * - and still use it to this day. She is almost 8. It was the only way she learned new cognition skills and to speak when asked (imitation).

Nice site, good job, thanks for all the work you did - I believe the web will change the world for the better if we can all talk about our experiences improving our lives and the lives of others.....whatever it is we are dealing with....

Take care,

Yahoo! (from news:bit.listserv.autism)

I need to brag.

Yesterday I got my son's report card. He got only A's and B's. He is at grade level (3rd) alongside with all the 8yo NT kids. I am so proud of him!

It seems like only yesterday when at age 3 1/2 they told us that our son was autistic. At that time he did not spoke or understood a single word. We were devastated.

No he is not cured. He is still autistic, and I am also proud of that, because many of his beautiful personality traits are due to his autism. I would not want to change that for anything! He loves to learn! He seems to have such a thirsts for knowledge, is like he want's to make up for time lost. He absorbs like a sponge everything that he learns at school. He seem never to be satisfied, he wants to learn more and more, he keeps asking questions, he loves books, he loves school.

I love my kid!!!!

(Before you ask me, we did ABA, but I am not promoting this method since every child is different and respond different to different methods. You know your child and you are the best one to decide what's best)

You have a wonderful web-site! Right now we are in the middle of redesigning our web-site. Once it is completed, FEAT of * will be providing a link to your web-site from ours.

Thanks so much for all the work you have put in to help other parents.


I feel compelled to simply pay you a compliment on you very extensive web site. I am sure you have helped many parents and professionals with your resources. ...

I work under a psychologist named * who does consulting for the majority of school districts in the state. She has in the past deemed ABA detrimental, yet is slowly coming around. She has hired me and approved a few programs utilizing ABA. Often times I feel very discouraged because of the two opposing views and wish to bail out at times. However I stick with it knowing that I have a very unique opportunity, to bridge the gap and encourage everyone to focus on what is most important .... The children.

Your dedication will also help bridge the gap and educate those who really need it.

Thank you, congratulations and good luck.

Hi Richard!

We are the parents of three children, ages *, *, and *. *, the oldest, is a handsome, intelligent, curious, typical boy who never stops ceasing to amaze us, nor does he ever let us stop questioning our own thoughts and beliefs. He’s wonderful and we thank God for him everyday, as we do with our other two children. *, who is *, is a beautiful, bright little girl who challenges us every day because she was diagnosed with autism in December 1997. *, *, is also a handsome young man who very much has a mind and will of his own and was also diagnosed with autism in April of this year. They are so precious to us, and because of this we will do the absolute best for them, no matter what.

Needless to say, * leads a somewhat sheltered existence and any school that has the ABA program would involve us uprooting our entire family, which we are willing to do, but only after we’ve exhausted every other method first. So, if we can’t yet bring our children to this program, we will bring the program to our children. We have decided, after much careful thought and consideration, to institute a home-based school program for * and *. As you probably can imagine, the amount of work we have to put into this program is extraordinary as are the costs such as remodeling two rooms in our house into classrooms, not to mention the costs of materials and supplies.

We've seen the amazing progress this program has made with our children and so very much desire to help bring this program to other families. We have made yet another decision and want to give it our all and open an ABA school in our area. We have a good idea of a building, and have some parents very excited, but other than that, we're not sure which steps to take first....trying to get the funding....trying to find the experts...etc.

Could you possibly give us some much needed advice on which way to turn first, maybe some do's and don'ts on implementing this kind of private school, a few steps of what needs to be done first, second, third? Anything you could offer would be very much appreciated!

We know what we want, we're just not sure how to go about getting it.

Thank you in advance for anything you provide.

Parents desperate to start a school,

I came upon your website, and thought you might be able to direct me to where I can get information on generalization of skills taught in discrete trial.

We have had a successful home based program running for about a year now. Our son receives 20-25 hours a week one on one at home and then is in a preschool for children with learning disabilities (high functioning/nonautistic) 12 hours a week. We are experiencing difficulting with generalization of his skills between the two environments. The logical thing to do is to send one of my therapists into the classroom with him, but the school is resisting that (I can go, but my therapists cannot). It seems that every successful discrete program I have ever heard of eventually does this, but I think I need proof. Do you know of any papers out there on the subject?

Have you dealt with this hurdle with your child? How did you do it? I am open to advice, it seems I learn more useful information from other parents than from the doctors and "experts" out there.

Thank you!

I am very glad to find you in this web site!!! I have a son who is autistic, that is what the doctors told me. He will be 4 yrs old in Jan. He is with the Child Find since Sept. of this yerar. He seems to make little progress there. He is still not talking, but less frustrated and less anxiety. His doctor has recommended me that he should not be in there. He should be in The Lovass' Program because it will be more appropiate for him. I don't know what to do now . The thing is that I just put my son with the Child Fine not that long ago and it is not enough time to see if it is Ok for him to stay there. He is 4 yrs. old and if I wait more he will be to old for the Lovass' s Program. I don't even know if this program will be the right one for him.

Please help me find the right place for him to be. I am devastated to find out that my son is like this.

May you have a wonderful holiday!


Hello Richard~ My name is * and my third child *, age *, was recently diagnosed with Autism. I want to set up a home program using the ABA method and would like to know if there are resources in my area-therapists who are trained in the ABA method and funding availability. I live in *. and have used the early intervention but all I could get from that program was 1hour/week of ST and OT. Certainly not what my son needs. I know you are a very busy person and I am grateful for the information you have presented in your website. I respectfully request any information you may have for me to begin a home program to help my very beautiful and special son. I have ordered and received and read the books, "Let Me Hear Your Voice" and the "Behavioral Intervention for Young Children with Autism" By Catherine Maurice. I am not in a position to afford hiring therapists and will need to start this program myself until I get the resources to help me. I am desperate to begin helping my son. Perhaps you have a contact person in my area- *- that I may talk to. I would also like to call you. Please provide me a convenient time if your schedule permits. Sincerely,

I just logged on to your web site, and had to tell you how impressed I am. Many sites are a jumble of misinformation. Yours stands out as a very well thought out and organized site. You must be devoting enormous time to it. I have no doubt it will make a significant contribution. It's going to be one of the top sites I refer people to.

Best regards,

If the child fails it is the program's fault (from news:bit.listserv.autism)

THis may make some of you not happy but it is what my research is pointing to finally . Searching for the answers of what happened to Abbie and Matt in the video and other children.

This is the use of DTT [discrete trial teaching] on older more severe children in self contained (like Abbie and Matt) or residential (a 14 year old and a 16 year old) IT DOES NOT WORK.

It is made to work and does work on some and maybe MANY children when in the 2 to 5 year range. However in the case of the children above (all over age 10 years old it hits a DEAD DEAD end)

 These children need to have positive behavioral supports and interventions and academics . IDEA97 requires children have access to the general ciriculum and PBSI .

All of the children above were forced to sit at a table doing pointless repetive boring ridiculas stuff. They were deemed noncompliant , not motivated, behavior disordered, violent and they were punished for not doing this. 

THEY WERE BORED. Yes children with autism get bored by stringing beads, putting blocks of colored wood on paper, pointing to a picture of a truck and then a toy truck, sorting pennies, doing puzzels (all examples of the above children) day after day and week after week over and over and over and over and over and over and over....AGAIN.

My kid got dragged into time out and prone restrained when pushing them away , Matt was restrained like a common drug dealer in a drug bust, the 14 year old put on drugs and told to live the school and the 16 year old put in time out for not doing the puzzels.

Really really weird stuff to me.THe other torture is the baby preschool work that Abbie and Matt (at age over 10 and age 13 were also subjected to and the Lack of exercise and other activiites for hyperactivity and the jelly beans and other food given to them like dogs.

Yes DTT can help some kids if not many at a younger age BUT please make sure your kids don't end up with no education or academics and bored into being angry and more hyper. Think of the torture of doing something that makes you so bored at a table and being forced to sit and do this over and over and over again till you want to scream. They someone taking your hands and forcing you to do this or dragging you into time out or restraining you.

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