Autism for Primary Identification?


New Member
How important is it to get Autism as the Primary Identification on the IEP? difficult child has had an IEP since he was in 1st or second grade, but it was always under EMotional Handicap as the Primary. Specific Learning Disability was added as a secondary in 5th or 6th grade. He is now 16, in a court ordered placement, and still failing in all aspects of his education (social, most academics, etc.). After 11 years of being diagnosed with various things (o.d.d, adhd, Reactive Attachment Disorder (RAD), conduct disorder, bipolar, anxiety, mood disorder not otherwise specified) and treated for those, primarily bipolar, he underwent a full neuropsychologist, and after a complete and thorough review of his history, an interview, observations, he was diagnosed with Autism. The Psy dr. was astounded and couldn't believe the signs had been missed all along. So this answered a lot of mysteries as to why every sped school he was in, every therapy we tried, and every medication he was on never significantly worked!

After this new and final diagnosis, the IEP team met to determine whether we should change his primary disability to Autism. After a long, round about discussion, where most of the team seemed to agree that he meets the criteria to change to Autism as the identified primary, the school person pushed hard and eventually convinced (or more accurately confused us all) that he didn't fit the first criteria on her sheet. We were able to get her to agree on a primary identification of Other Health Impaired - noting Autism as the impairment and secondaries of the EMotional and Learning Disability (LD). On reflection and after having the time and space to look into it more and understand it more fully, we are wondering if we shouldn't have pushed harder to get Autism as the primary. Our concerns are that he has been misdiagnosed and as a result been put through therapies and education that might not have been able to reach him for his entire life; now that we know differently, he has Autism, there are different approaches that have not been tried with him that are tied to that diagnosis, so we want the Autism front and center to remind people who will be implementing his IEP. Or is it fine that its OHI so long as they try to utilize approaches that have proven successful with Autistic kids. A note: I really get the feeling that not only does the school person not agree that he has autism but I also think that she has a picture in her mind of what an autistic looks like - and its more of a low functioning. She even kept repeating that "well, D has an average IQ and he scored well on his speech language assessment (which was given one on one in a separate room, and judged by someone who's only contact with him was the hour long test she gave him)"!

Any thoughts/advice are greatly appreciated!


New Member
Yes he has attended many Special Education schools, the one he is in currently is tied into his residential placement. Yes, the plan is to hopefully hold him in school until he is 21, although he is doing a pretty good job of holding himself back anyway by not earning the amount of credits he needs! lol

Our question is about how important is it to have Autism be listed as the primary diagnosis - are there any pros or cons to it. Should we push back and push for it?


Well-Known Member
My son is on the autism spectrum, although he was never a behavior problem. He was misdiagnosed many times and his labels changed from Learning Disability (LD) to OHI to Autism. The Autism was the most helpful in getting son a head start into his adulthood. This transition is supposed to start as a freshman, but really kicks up in junior/senior year. Son graduated two years ago and is 85% independent and happy and doing well, and he did not start out that way. OHI was a good placeholder while, like your son, he was misdiagnosed with an alphabet soup of wrong diagnosis., including bipolar, in which he took heavy medications for three years...medications he did not need. All the while, he displayed Autism Spectrum Disorders (ASD) symptoms and basically we wrote Autism Spectrum Disorders (ASD) interventions into his IEP, but he was labeled OHI. My son graduated from regular high school and was mostly doing his own work. As stated, he was no longer acting out even when frustrated.

I would not like the Emotionally Handicapped label one bit. He isn't emotionally handicapped. He is neurological impaired, big difference. If you are looking toward the future, he can probably get disability and adult supports to help him when he moves out with either diagnosis, but I think autism is treated differently. I think most people automatically think of emotionally handicapped as being "bad." I could be wrong. I know I didn't want that label slapped on my neurologically atypical child so he went from OHI to Autism.

My son will always think differently, but he gets more and more typical as he gets older and is doing really well. As you probably know well, autistic kids have to transition slowly to be successful. After high school, Sonic was sent to ODC, which is a sheltered workshop. He loves it and made tons of friends there. He is really a hard worker and pretty high functioning and was recently tried for a community job where he'd make more than minimum wage, although he will still need his disability for supplement. He wants the job and hopes to get it. However, as the slow transitioning goes and works so well, he is only going to work there for fifteen hours and work the rest of the time at our ODC. We go each step at a time. He wants to move out of the house and into one of the several choices of apartment homes for disabled adults that exist. They are not group homes. He lives himself and a caseworker drops by every few days just to make sure everything is ok. He knows all the people who live in those places.

It's another great transition for Sonic and will work very well. He is capable of living on his own, especially if he knows his neighbors and is close to town so he can ride his bike where he needs to go. I'll drop by to help him shop etc., but a worker can also do that. Maybe one day he will do it himself, maybe not. It doesn't matter. A happier young man I have never long as he isn't pushed too fast. He is unable to quickly make changes in his routine and the autism diagnosis lets those who are working for and with him how to handle him best.

Will you get all this understanding if your son doesn't have the primary Autism label? I don't know. I think it would be wise to try to get it so that they gear your son's future toward his issue. Example: My son sees no need to see a therapist and doesn't. He's medication-free as he is not depressed and does not act out. Now if he develops those needs, he will be taken care of, but right now he is mostly just struggling with autism related issues and he has come very far because most of his help from the time he was diagnosed was exclusively geared toward autism. He was diagnosed at age eleven. We did insist the school use Autism and we had a school advocate so we had no trouble getting it changed, even though it was an outsider (private neuropsychologist) who diagnosed him. Since that time, we have had two other neuropsychologist evaluations, mostly for his adult care workers, who verified his diagnosis.

Short answer is, I do think it helps.

I wish you luck. If you have any trouble with the school, I would call the Dept. of Public Education in your state and tell them your story plus ask for the name of the free-of-charge student advocate in your area. Sometimes it is just impossible to deal with certain school districts without help. Advocates are very astute about the law and the school districts will not try to fool them like they try to fool parents.

Keep us posted!!! :)