I’m sure if this has happened to you, it sure felt like a gaslighting moment. You have a child. The child sees various doctors and specialists, some of whom have diagnosed the child with autism. Then, you go to the school to ask for assistance. And you’re told that your child does not have autism.
You are not being gaslighted. (at least not about this!) There is a difference between medical and educational autism and I find that most parents don’t understand the difference.
I mean, how can that be? Right?
Medical vs. Educational Diagnosis
The US Medical system has literally thousands of medical codes. Some are for diagnoses and conditions. Others are for therapies and treatments. Systems of medical coding have been in place throughout the world for centuries.
However, it’s only in recent decades that our US system basically “lives and dies” by codes. This is due to managed care. If the diagnosis or treatment doesn’t have a code, it ain’t gonna happen!
Medical Diagnosis of Autism
The DSM is the big book of diagnoses that our medical system relies upon. Again, due to our managed care system (read: insurance companies), if your condition is not in the DSM, it is very difficult to get things covered.
The DSM gets revised periodically and it was just revised a few years ago. The newest version is the DSM 5 (DSM V). Autism and Intellectual Disabilities both received significant changes to their listing in the DSM 5.
Autism is in the DSM 5. If you remember, Aspbergers was removed. But that’s another story for another day.
So, you took your kid to a specialist. The specialist assigned your child a diagnostic code, using a diagnosis from the DSM 5. Your child’s specialist felt that your child met the criteria (listed in the DSM 5) for a diagnosis of Autism. The DSM 5 will list the criteria for all the diagnoses, and how many of them a person has to meet to qualify.
Educational Autism Diagnosis
Let’s move away from our doctor for a moment. Now you’re at the school. You’ve requested and received IEP evaluations. My guess is that you are assuming that your child will be listed as autistic and receive services due to his/her autism.
But, when you get to the meeting to discuss the report, they tell you, “No autism.”
Or, sometimes the reverse happens. Your child has a diagnosis of some kind, something other than autism. And when you get your IEP evaluations, they tell you, “We want to check the autism box.”
And you don’t think your child has autism.
After this happens, frustrated parents everywhere hop into my Facebook group and proclaim, “They diagnosed him with autism, and I know he doesn’t have autism!””
Or, “They said he doesn’t have autism but his doctor said he does!”
What is Educational Autism?
Schools cannot, and usually do not, diagnose. They did not give your child a diagnosis of autism.
First, they do not have the authority to do so. The DSM is very specific about who can officially diagnose autism. (and it’s a very short list, hence the long wait for many specialists, but that’s also another blog post for another day)
If they were actually trying to attach a diagnosis to your child, it would basically be the equivalent of practicing medicine without a license. And I don’t think most school personnel are going to take that risk.
Understanding Disability Classification
I have written a lengthy post about IEP Disability Classification and why it matters. But here is the Cliff Notes version of Disability Categories.
IDEA has defined 14 eligibility categories for IEPs. One of them is Autism.
When doing IEP evaluations, the school’s task is to evaluate your child and determine if they fit the eligibility criteria for any of the specific categories. But when you are being told either Yes or No to autism, they are not diagnosing. Nor are they necessarily refusing to acknowledge an existing diagnosis.
What they are doing is this: Determining Eligibility for a category. And determining eligibility is not the same as diagnosing.
Educational Autism on the IEP
IEP meetings are stressful and emotional. And parents can be overwhelmed and only hear keywords that stick out to them. So I think that a lot of parents hear a diagnosis of autism, but that is not what the school has said. IEPs have become so litigious in recent years, I find that many school personnel are very careful about their words.
But my guess is that no, you were not told your child has a diagnosis (or not) of autism. That’s just likely what you heard, as you have a lot of information to disseminate under very emotional conditions. I find that parents use the word ‘diagnosis’ casually and sort of slang when what they are talking about is not a diagnosis.
What I’m trying to politely say here is this. When you say, “My son has an educational diagnosis of autism” you’re using incorrect terminology. Not shaming anyone. But learning the difference, and learning this part of the process will help you become a better advocate.
Understanding the categories and their role in the process will be so beneficial to you, I promise.
Disagree with Educational Autism Diagnosis
If you disagree with your child’s doctor’s diagnosis, you seek out a 2nd or 3rd opinion. Perhaps a neuropsych.
If you disagree with your school district evaluations, you ask for an IEE. And that may or may not include a neuropsych. As always, keep a good paper trail so that you have the data you need to make your case.
Yes, kids are put into the incorrect disability classification. It happens. Read and use your procedural safeguards if you disagree with any part of your IEP.