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Child Diagnosed with Autism, School Won’t Help

04/15/08
by Pam Wright

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 IV).

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 the see the “educational definition” of autism. How does it differ from the diagnostic criteria set out in the DSM IV?

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 http://www.yellowpagesforkids.com.

-Pam

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16 responses so far ↓

  • 1 audrey 11/27/14 at 7:42 pm

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

  • 2 Carmen 02/25/14 at 10:38 am

    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.

  • 3 Betzy 11/11/13 at 12:20 am

    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.

  • 4 Suzy 11/15/12 at 5:45 pm

    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!

  • 5 Lisa 05/01/12 at 2:09 am

    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.

  • 6 Sherri 10/14/10 at 12:09 am

    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.

  • 7 lisa 10/13/10 at 8:13 pm

    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?

  • 8 johanna 03/25/10 at 7:03 pm

    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

  • 9 April 09/17/09 at 12:39 pm

    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.

  • 10 LB 03/12/09 at 1:41 pm

    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.

  • 11 DR. R 12/02/08 at 1:56 pm

    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.

  • 12 Thomas 09/20/08 at 4:39 pm

    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 http://www.mic.mypodcast.com

  • 13 David 05/08/08 at 6:29 pm

    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.

  • 14 Tom 05/08/08 at 9:03 am

    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…

  • 15 Sarah 05/08/08 at 6:24 am

    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?

  • 16 susan 05/06/08 at 2:00 pm

    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 Yellowpagesforkids.com, 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.