It has taken me a long time, nearly 20 years, to describe my child as having Profound Autism. I have often said "he functions as an 8 year-old child". I have said his inability to have a job was because of his inability to "attend to a task and follow directions" in a typical way. I have said many times "he has language but is not necessarily conversational". I have said these things many, many times.
Was I trying to make myself feel better or make the folks who asked about him more comfortable?
The term "intellectual disability" is now used instead of another word that sadly became a slur. Was I trying to avoid my child being a slur?
For whatever reason, I always had explanations and details to describe my son. And I suppose in some ways, I always will. I don't want anyone to ever see him as being "locked away in a home". I don't ever want anyone to see him as being lost or without wits or incapable.
But I also don't want him to be seen as Rain Man.
"Rain Man" was an extremely popular movie in the late 1980's. And it is full of accuracy as it was based, at least partially, on a real-life man named Kim Peek.
I have often told people that "Rain Man" just like "What's Eating Gilbert Grape" are fantastic and very realistic movies about the autism spectrum experience both for those who experience it and for their families.
It still bugs me when people have seen "Rain Man" and inevitably ask me this question:
"Your son has autism? Does he have any special skills?"
What they are really asking: Is your son a savant?
This has always been a tricky question for me. Yes, my son does have some extraordinary tendencies. I realized from a very early age that he could pick up on tunes, lyrics and sounds of music very quickly. A piano teacher once said he had perfect pitch. He could learn song lyrics typically after only 1 or 2 listens. He could identify songs with only 1 or 2 notes. He can remember television shows and run the entire script from memory. He remembers names of people he has only met once. He knows the directions to get places even though he has never driven.
Do all these qualities make him a savant? I don't know. Who's to say, really?
I will say this though, possessing rare qualities or not, my son is profoundly autistic. He is unable to drive. He is unable to work a traditional, supervised or modified job. He is unable to shop for his own food. He does not understand the cost of things or how money works. He takes medicine but does not know what it's for, how to get it, or how to sort it. He needs help with personal care. He needs someone to cook his meals. He needs someone to speak for him for medical care, legal representation and personal rights. He does not understand danger or threat.
He is Profoundly Autistic.
And he is smart. He is funny. He is warm and loving. He likes to hug and shake hands. He likes to sing. He likes parks and museums. He likes rollercoasters. He loves The Beatles and live music. He loves his family, especially his baby sister. He is loved by all who meet him including the housemates at his group home, family, teachers, therapists and even strangers we meet. And even if he's never a Kim Peek, he will leave his own mark on this world.
Even if he never truly learned to play the piano. And that's okay.
In a world where labels and diagnoses have become oh so important, I think I have become a fatigued by them all. And even though this will hurt some people, I have to be honest.....my son's diagnosis DOES define him. It does create a space and safety for him that he needs. And as his mother, I want that for him.
Do I wish it had been different? Of course I do. For him and for me. For his dad. For his grandparents. For his little sister. But I know who he is doesn't diminish him or us. His life isn't lived to be compared to others or as an example of what's typical or expected. While RFK is terribly misguided he wasn't wrong that autism does affect families. It has affected mine. It has shattered the dream of what I wanted life to be. It made me change my outlook and hopes for the future. It has changed me as a person, profoundly.
When people talk about high functioning autism or savant syndrome, I don't want my child to be considered in that conversation. When people ask me if I watch "Love on the Spectrum" I want them to know why I don't. When people send me videos of folks on the spectrum drawing the Sistine Chapel from memory, I don't click on to them.
(BTW, I think people mean well when they send me these clicks. They just don't understand how it feels. It feels like "hey, your kid may have graduated but my kid graduated with HONORS!" I'm happy for your kid, I just don't need to constantly be reminded of all the things my child can't do. Fair? This, consequently, is why I often stay off ye olde Facebook around the time of graduations and prom season. It's self-care and you shouldn't take it personally.)
Because my kid is my kid. He's not your poster child. He's not your good or bad example. He's not your cuddly disabled child friend. He's a person. Just like me and you. Just like those other kids whether he has a diagnosis or not. He's a living, breathing person with value.
And that, gentle readers, is profound.
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