Child Diagnosed with Autism, School Won’t Help

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I had a question from JH today asking about an “educational diagnosis” of autism. Here’s what she asked.

“What do you do when your child has been diagnosed with autism from every medical doctor he has ever seen, including a developmental pediatrician and a neurologist, and the school says he isn’t ‘diagnosed educationally’? In other words, he doesn’t meet the education definition of autism.”

Autism is a neurological disorder that includes impairments in communication, socialization and behavior. The diagnostic criteria for Autism, Asperger’s Syndrome and other disorders on the autism spectrum are listed in the Diagnostic and Statistical Manual (DSM V).

Autism can affect every aspect of a child’s life – communicating with others, establishing and maintaining relationships, learning, and in the ability to express emotion.

If the school is balking at providing services, ask to see the “educational definition” of autism. How does it differ from the diagnostic criteria set out in the DSM V?

JH didn’t say what state she lives in, how old her child is, or how long she had been trying to get help from the school.

If you have a child who has been diagnosed with autism, you have no time to waste. According to the National Academy of Sciences, “the diagnosis of autism can be made reliably in two-year-olds by professionals experienced in the diagnostic assessment of young children” with autistic disorders. Early diagnosis is crucial because education is the primary form of treatment, and the earlier it starts, the better.”

Further, the Individuals with Disabilities Education Act (IDEA) does not require the school to “label” a child before finding him eligible for special education and related services. To be eligible, the child has to have a disability and “by reason thereof needs special education and related services.” If a child has been diagnosed with autism, that child needs special education and related services. We built a topics page of FAQs, resources, cases, organizations, and other information about Autism, Asperger’s Syndrome (AS), Pervasive Developmental Disorders (PDD), and other Autism Spectrum Disorders (ASD). These resources will help.

Write a polite, business-like letter to the school that describes the problem and your proposed solution. Ask what the school plans to do for your child. If you do not get a satisfactory response, you need to consult with an attorney who has expertise in special education issues. For attorneys in any state, check the Yellow Pages for Kids site at


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Can someone explain why a school district wants to avoid classifying a student as ASD. The student has been diagnosed with ASD and ADHD. The student currently is inaccurately classified under emotional disturbance. The district says that the services that the child will receive would be the same under either classification. It is obvious from discussing the classification with the district that they want to avoid ASD classification, but I cannot figure out why. I understand the “education diagnosis” argument. That is just a smokescreen – there is some fundamental underlying reason that they do not want to classify ASD. It has nothing to do with educational diagnosis. Does anyone know the real reason? State = Pennsylvania.


This happens some in TX because there are extra requirements schools must provide for students with Autism. Your state parent training and information should be able to assist you.


Thought this article was about how the school system is failing autistic people. We already have been through a pretty arduous ordeal to get our child into special needs programs but it’s not helping much. Her first year in an all-autistic class was amazing, but this last year we found out all too late that her teacher was basically letting her do whatever as long as she was quiet and content. She’s barely grown at all and they cut her ST and OT drastically because they “can’t afford it”. Now they told us in her IEP meeting that she is going into a general special needs class next year at another school, too. We’re hoping for the best but it’s a hell of a struggle just trying to get her a one-one aide IF that helps. She is very smart but non verbal mostly. I feel like she is being punished


Why does this take so long to get our students to a better plan. It could take up to 2 yrs. to get a plan in place by this time the child is so far behind he/she now need a tutor or held back for another yr. The schools don’t care about the situation our children are in and don’t want to spend the money.


Most people can’t afford a lawyer and some areas may or may not have advocates set up to help (and even if they do, they’re not always good and they may not even be allowed to go to meetings with you, assuming the schools don’t just illegally tell you no when you request an IEP (happened to me). ARC was helpful for parent advocates but not the paid ones. If it gets to filing a complaint with the government, know you only have a short period to do it (so start right away). It takes a while for the paperwork to get to you, then longer to be reviewed, and if I remember right, you then have to do it again,and then you’re offered a mediator (who isn’t allowed to tell you you’re rights, which is *very important to know*). A mediator might *want* to tell you your rights, but they can’t.


My son was diagnosed with educationally autism . Is this different then medically autistic? What are the pros and cons of one or the other? Should I have my son diagnosed medically autistic?


What you should do is research dietary and detox options for your autistic child. Immediately begin supplementing with omega 3’s and probiotics.
I am a teacher at a private school. The school and parents refuse to acknowledge the child as asp. Instead they give him at age 10 antidepressants and Ritalin which is horrific. The school has muted anyone from speaking the truth, which all of the teachers are in agreement of.


Thank you for sharing. I have witnessed teachers wanting to say or even not say certain things but they are made to. It can seem like a breach of ethics even, but as long as the school is protected forget the children. (sarcasm) My child has ADHD and ASD but we will avoid hard drugs (prescription drugs) as long as we can. My nephew has been on various drugs for his ADHD and it’s been heartbreaking to see what he goes through so his parents can avoid therapy and putting actual work in as parents. Teaching is such an important job and especially difficult with sped kids. Hats off to you <3


Oh my gosh…I’m not alone!!! My daughter is pretty much labeled at her school with behavioral problems. When I bring up the word high functioning autistic or aspergers they look at me as if I am crazy or don’t know what I’m doing.
I’ve always thought that the state assigned therapist; play therapist, was enough to get us to a the appropriate professionals needed to diagnose my daughter properly to support her needs. It seems though that the school’s seem to think they know my child more than I do. Something just doesn’t jive with the system. Mommy instinct on, moving forward. Thank you all for the knowledge and stories.


Jamie, I have exactly the same problem with my son at school. What steps have you taken to improve his situation. I’ve tried and tried but seem to be getting nowhere with the school.


Oh my gosh no! You are not alone at all. I’m surprised there’s not a subreddit on this. It becomes a full time job learning all your rights and the exact way to phrase things (they can ignore requests if the wording isn’t exact). There are many websites online on how to deal with the schools to try to help a special needs child, but be prepared. It’s going to take years, a lot of knowledge, and a lot of endurance. There are example form letters on several websites to help with the wording. Be sure to always respond *in writing* to every phone call and every in person meeting. Schools can and will lie. Ask ahead if you can audiotape IEP or 504 meetings if you’re lucky enough to get them. ~Best wishes~ You’re not alone!


Can you please list the website(s) that have example form letters you are referring too? Thank you!


That public school system is horrible! But the non public school adds up to your stress and more behavioral is learned! Maybe there are good ones too


I have an ADHD child who has also been diagnosed with ASD and an anxiety disorder. At a school meeting prior to the diagnoses, the school put me at ease by informing me that they are the only school in the district with an ASD program. Fast forward a few days and after diagnoses, they now say they have to test him “educationally” and that the guidelines are strict. I read it as, “Don’t get your hopes up, no matter what the 4 psychologists he was evaluated by said, we do our own thing.” I’ve tried for an IEP in the former school and they had denied it based on my child’s “strong academics.” They are supposedly trained and have school psychologists, yet they won’t acknowledge that most autistic and ADHD kids are very smart!


Your state parent training & information center should be able to assist you in dealing with this situation.


I was told by friends of the family that my ASD child should be getting free in-home care but we have looked for such a thing for years now and it seems like a fairy tale. The schools tell us they cannot offer more therapy (they do very very minimal in group sessions), because of funding and the doctors tell us they cannot get my daughter recommended for therapies outside of school because she is getting it in school. We could barely afford therapy twice a month with her disability and now the state has taken it away we definitely cannot afford it. We were told by SSI that my husband should work LESS and that we would get more help if we had more kids!!! The whole “system” is a joke. Be prepared to fight for life and stay strong! <3


My grandson has autism. The school will only let him go to school for hour an half a day. Live in AR.


My granddaughter is been diagnosed with autism and the school where she is attending does not use the eligibility of asd in her IEP, but instead they use language impair and other health concerns. Please can you point what I can to to help grandchild to get the services she needs.


In California a Dr. must give diagnosis for most issues including Autism, Color blindness, dyslexia, ADD, etc. It does help to have an evaluation done by an agency. Unfortunately you maybe getting a better education for your granddaughter having her in mainstream exposure. Our grandson has had an IEP since he was 3, he was non verbal until 5. The District placed him in a moderate to severe special ed. classroom. Unfortunately he is 11 and is still being exposed to ABCs, 123s, coloring and other things he was being given in pre-school.


I have had the same problem with my daughter the Mod-severe autism self contained class. Some work sent home non special education teacher I work with 3 grade they sent me some coloring pages home ! She is working less because of her behavior and they can never help her with behavior also they give her low IQ so they can save money so sad to hire lawyers to struggle with the school system!


In CA too and my non verbal asd/adhd kid is 5. We’ve had her in school since she was 3 and this last year her teacher wouldn’t let parents visit as they had last year. I think I see why. They neglect to teach anything. My child at least has become somewhat more verbal thanks to the speaking Asd in her all-asd class but they are now putting her in sped class next year and I’m terrified it will hinder her. She is very smart earlier this year when her teacher excitedly told us she matched shapes we said “Yeah..” She has been good at that since she was 2! They want us to be impressed that they were consistent enough to get some hint of what she knows but they usually just give up on her when she is upset! Doesn’t help that some staff can’t speak english, can’t communicate with us!


I am going to same problem, my son has been diagnostic Autistic High Function. The school test him after a year asking for and they say on his MET Report that he do not has autism, but every day the teacher write that he has behavior problem, he been diagnostic OC, ODD, ADHD, auditoring processing, virtual perceptual, and that is when his pediatric Dr. referral me to a Neurology Dr., I have a appointment with a lawyer and I hope he can help me. If so want can help me I really appreciated, I like to know how I can fight the school district is so sad because children with high function are lost in the school system.


I agree completely. I live in Texas and my daughter is dignosised with ASD, OCD ODD ADHD SPD SLD

at school she is in an inclusion classroom and she does receive services for SLD but that is all I had her tested and was informed by the school that the only thing wrong is her family dynamics. SLD is the only school dx.

I am at a loss. Please let me know how things go for you this fight is exhausting and yet there is no other way.


Michele Ortega is good if you live in CA


I feel the pain! My son was also denied saying medical autism is not the same as educational autism, and on that basis the team dismissed a top multi-disciplinary team’s reports (they said my son should be a “shoe-in”).

I requested an independent educational evaluation (IEE) and went to professionals at different locations rather than the same office. I also had to file a state complaint, and won. It is an ongoing battle because eligibility is only the beginning. Then comes fighting for an adequate IEP, then comes getting them to follow it ….

Subsequent to the complaint, this past year we spent $10,000+ (in home equity) on a special ed attorney trying get that *free* public education with no real gain. Situations will vary … but we now wish we’d spent that money for direct services!!! Don’t give up, though!


we need to talk. AHHHHHHHHHHHHHHHHHHHHHHH. I’d love to hear what happened next.


Hi my name is Lisa and I am a widow with 3 children that are in the autistic spectrum. I have a 20 year old, and twins that are 14 years of age. I can’t even begin to tell you what I have been through with the schools and trying to juggle everything on my own with no help. All I know is teachers and schools now days are joke and kid’s now days in school are just horrible to children with disabilities. I could write a book on all the heartache and struggles so many people have put my children and I through. I am just disgusted with the system period and how messed up people are anymore.


I have three children on the autism spectrum. We have been told repeatedly by our district about a medical diagnosis, versus an educational diagnosis. We have had to fight with our district for everything.

One child has an IEP that is, at best, inadequate (no transition planning). The second child has half an IEP because we are still trying to get needed services after 1 year. The third child has autism, needs special ed, but has no IEP. Last week, we left another IEP meeting after more stalling tactics and games designed to keep our daughter from getting the services she needs. We are tired of taking one step forward and two steps backwards.

After 10 years, we have had enough. Today we retained an attorney. We are really scared, but feel a sense of peace that we are doing the right thing for our kids.


Is the school required to use the dsm-iv or IDEA2004,We live in NJ . We are JH he is 11 .He has pdd-nos . We have a recent court date to go and fight for a functional behavior analysis. The school is taking us because they dont feel they should do one. Not educationaly necessary! He is on almost 3rd grade level he is in 6th grade. We feel its his environment and the lack of knowledge on autism from the staff. They use teacher observation to eval his progressREALLY wake up its 2010. There is no scietifically based instruction or evaluation going on .He drowning . We cant afford a lawyer so we are going it alone ,Us against the district and their attorney that my tax dollars are paying for. WOW ! We read Idea 2004 that the school must use this to classify the child and the school must do an eval with BCBA . Are we off the beaten path?


I am going through the same thing here in Pasco county. The day I gave them two reports (neuro. saying PDD) and lisc. psyc. who accually has written books on autism and is in his 70’s and worked his entire life with autism did a CARS on my son autism dx 299.00. That week they wrote “dismissed” on his matrix which was the highest it can be 255 and told me he no longer qualified for speech nor school (preschool). So I fought…then I finally got him a good IEP (after 8 months of advocating) w/speech and lang. elig. I requested then you do your own eval. they did an ADOS and was “significant for autism spectrum disorder” BUT they said he did not have it. It’s now two years and I am still fighting for him because they are now talking about putting him into a reg. Kindergarden class with 21 kids and one teacher and 3 of the 21 kids have an IEP


My sister is having the same problem. The school is not helping, we filled out their paper work a year ago. Since then we have filled out their paper work and repeatedly asked for my nephew to be put in the proper classes. Contacted a lawyer but can not afford the fees. Is there another way to get help? My nephew is a level three and needs help, he loves to learn but all day in a normal class is not going to be productive.


I’m in MA, my son is 6.75 years old and I know exactly what JH is going through. My PDD-NOS dx.’d son was stripped of all services and mainstreamed into a general Kindergarten Class in Sept of 07- by Oct 07 his general education K teacher was screaming for help with him.I have 4 different M.D.s saying he’s PDD-NOS and even the school pyschologist says in an evaluation she did that the Dev. Delay category an eval the district did in 2005 is wrong. I hired an Advocate, have reports from his Pedi, a Dev. Pedi, and 2 different child Pyschiartrists that all state he fits the medical(DSM-IV-T-R) diagnosis AND the state eduational dx.I’ve had 11 IEP meetings in 17 months and had to fight to get every single service that’s on the current IEP and they still won’t change the DD. They can stop services at anytime with the DD category or at age 9.


I’d feel mixed about that tbh. My child is PPD NOS ASD with ADHD yet she doesn’t have as many behavioral issues as most the kiddos in her class that are going on to gen ed. My kid is very smart but doesn’t show it because she is non verbal & the adhd makes her stubborn! I wish I could have her in general ed with a paraprofessional or at least still in an all-asd class though the teacher this year neglected her whenever she would have a meltdown, the only reason her learning was hindered. She started talking more because of the asd kid in her class that talk! They are putting her in Sped next year & we are terrified because sped is like the “lost toys” box for most asd. I feel it will not help her to grow. If we don’t see improvement we will be looking into other options.


I have read your response to JH, and agree with most of the information provided. The one point I would like to add is that Autism exists on a spectrum, from very mild to severe. The educational definition of Autism includes a portion that states that the condition must have an adverse affect upon the student’s “educational performance.” That being said, it is possible that a very small perentage of children who fall on the mild end of the spectrum may not require special education services in order to obtain a satisfactory educational performance.

Each student must be viewed individually, not a label (Autism). The label does not dictate the services. Rather, the services are determined by the student’s educational needs.


What happens when it’s your child’s declass year and all his grades fall each quarter bc services were removed? I am NY. He had a diagnosis of autism. He struggles in reading.

Concerned parent

Sadly, a lot of the tests given to see if the child is eligible are not appropriate for the child. They may score average or above on the States required tests for eligibility but these tests are not applicable to the child’s needs. Therefore a child is left to struggle in the grey area.


Most severe autistics are hindered by SPED classes as well. My mother is a SPED teacher and sees ASD children put with downs children, many times they will emulate the downs children. Autistic are known to take examples from others to imitate since they don’t naturally know how to socially be “normal” . Many times this drags the autistics down when they could excel in a better environment. The problem lies with the schools’ funding and not having enough staff with enough patience to consistently help (even a severely…) autistic child deal with their emotions and sensory environment.


People wishing to learn how to transition their autistic children back to school or into a new school might benefit from listening to the following free audio podcast put out by Midnight In Chicago:

“Transitioning Autistics Back To School”

This and many other Autism Spectrum Podcasts are available at


My son’s school distict is paying for web based courses via Florida Virtual School. He has an IEP goal of working up to an hour with less than six prompts. The Distict only provides a “tutor” for two hours per week out of 26+ hours of instruction.
My wife (certified teacher) provides the remainder with no financial pay.
The district has indicated that the teachers who monitor the courses for Florida Virtual School are serving as the highly qualified staff under NCLB.
Are schools allowed to have a BIP that is only monitor for 2% of a child’s instruction?
Is the school required to provide staff who is qualified in the area of my child’s disabiilty to assist ?
Under NCLB are the highly qualified requirements met by providing a person who is highly qualified in the subject?

BTW My son has a 4.12 GPA, is on grade level and just completed Spanish I and Algebra I along with other required High School Courses.
Two years ago, he had made 0 % progress by April. All of his assigments were given to us and were turned in by August of the same year. His progress report indicates 0 for the first thee nine week period and 93 overall average for the fourth nine weeks that was extended to August to allow him to complete the work.
Keep up the good work you do.


That’s awesome. I have been looking into home schooling my severely autistic child, she is being put into special ed next year and we feel this is unfair because she is very intelligent and has trouble showing what she knows because of being non verbal and just dealing with loud environments and etc. She did great in her first all-asd class because they were able to help her cope AND still expected her to participate this last year in her all-asd class the teacher was too passive and would give up right away. I am afraid that will happen more-so in a special ed class. Anyway, I like the idea of having a part-time tutor, not 100% all me teaching…I don’t know how possible that is for a child that is Kindergarten special ed or even 1st grade :/


If I have learned *ANYTHING* in the 5 years I have been Advocating for my step-son and others on the Autism Spectrum, it is that “The Squeaky Wheel Gets The Grease!” And while Wrightslaw has been most instrumental in the success we have had — I have read many an article about “Playing Nice” with School Boards — Unfortunately, I have never met a School Board that “Plays Nice” in return!

Of course I am cordial, accomodating, etc., going in, but trying to “play nice” cost our son 2 years due to the School Board’s broken promises, back-tracking and run-arounds. Now, the moment I begin to hear the inevitable. “We don’t do that” or “We don’t provide that service”, I let them know in No Uncertain Terms that I am not much interested in what that particular School Board has done in the past, and only am concerned with what it is required to do by Federal Law under I.D.E.A. and seeing to it that they comply. I then back that up immediately via the Mediation and Due Process procedures afforded by I.D.E.A.

I think Parents of children with Developmental Disabilities — and particularly Autism — need to remember one very important thing: Special Ed Teachers, Department Personnel and School Board Officials did not get into “Special Education” to get rich; There is no devious conspiracy to deny our children the proper opportunities and envronment in which to Learn…No, its all about money (or rather the lack of it) and the inability of the States and LEA’s to fund the proper programs propounded by I.D.E.A. LEA’s routinely mislead parents simply because they do not have the proper funding; Their hope is that the parents will accept their expanations and “go away.”

And the “Squeaky Wheels” ? They get their kids outplaced to Private Schools…


My son had a medical diagnosis of aspergers. I arrived in Tennessee with a current IEP, and they decided to reevaluate him and he lost his IEP due to doing well academically. Long story short, his grades declined, he became a victim of bullying (which the school has repeatedly ignored), they actually make out that my son is a behavioral problem. I ended up pulling him from school and he is now homebound. They now decided because his grades are declining to reinstate his IEP, but still have it as him being a behavioral problem. What can I do?


my son, fit this situation to a T. He was diagnosed by a board certified developmental/behavioral pediatrician with Aspergers. My two nephews had already been diagnosed as well. The school district told me that the MD’s don’t do all of the “proper” testing that they do, so they didn’t have to honor the diagnosis and that their tests showed my son did not have it. Well, the next meeting I walked in with an Advocate that I found on, and they discovered his autism by watching him on the playground. Follow your mommy instinct, I wonder how many other kids my district “missed” having autism.