Brian’s very first diagnosis actually wasn’t Autism, it was PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified). PDD-NOS is a sort of watered-down version of Autism where the child doesn’t quite meet all of the requirements or the symptoms are very mild.
A year after that diagnosis, Brian was diagnosed with Autism and by that time I was much more educated in the world of ASD. I knew in my heart that Autism should have been his very first diagnosis. My boy clearly had Autism.
I was actually able to ask the evaluator years later, why she had diagnosed him with PDD-NOS instead of Autism. She said it was because how connected he was to me. Because he cuddled with me, made eye contact with me, craved my social presence, and shared his world with me she didn’t think he met the textbook diagnosis of Autism.
Here’s the thing. That is a myth.
My son is undoubtedly autistic. He flaps, he spins, he has trouble communicating, he can’t make social connections with his typical peers, he has sensory-processing issues, he has other health issues that go hand-in-hand with autism, he has anxiety, he has difficulty with self-care skills, he lives for repetition and routines, he is echolalic, he speaks in scripts, he has intense limited interests, and most of all….he LOVES his family.
Last week I met a new family who was questioning whether their young son was on the spectrum. It’s not my job nor am I qualified to diagnose individuals with autism. However, I can recognize the signs and I’m also very aware that many signs can be attributed to sensory-processing disorder, anxiety, and ADD/ADHD (to name a few). I could see how an evaluator would struggle with this little boy and where he may fit in the world of spectrums. But I could not understand when the Mom told me that the evaluator told her that he did not meet the ASD criteria because of how connected he was to her.
It blew my mind. I couldn’t believe that the same myth I heard 9 years ago is STILL being said by PROFESSIONALS to this very day.
Yes, the DSM clearly says an individual with autism has trouble with social relationships. In both my new friend’s and my own son’s case they struggle immensely with peer relationships and communicating with people they are not comfortable with. That is what autism should be based off of. Not their relationships with the people who have cared for them all of their lives. The people who have fought hard for them and advocated with every breath, the people who sincerely empathize with them and understand every nuance and can feel why it bothers their child so, the very people who are the only ones the people with autism feel truly comfortable with. They may have autism, but they are human beings first and foremost, and they understand love.
Does my new friend qualify for an autism diagnosis? I don’t know. But I do know, that the diagnosis should not go off the table merely because he has a strong relationship with his Mom.
The continued repetition of this lie being told by professionals in the field is one, denying children that may qualify for services of those services and two, trying to deny our children of the ability to love. And I won’t stand for that.