Hi! If you want the “read-aloud” version (read by me 😊, not a computer), please click on the audio above.☝🏼
All I wanted was something official to document that my son has a medical condition that should be printed on his state ID card.
I suggested some simple wording to argue for an “Autism” label, like: “This developmental disability impedes his ability to communicate.”
The letter his doctor’s office sent made me wince.
I mean, I knew it wasn’t going to say: Watch out! This young man may come at you with an exuberant “Ah-Cha!!!” when he’s happy.
But their note went well beyond his non-speaking challenges; it was crammed with a whole host of complications, deficits, and “substantial functional limitations.”
Sensory sensitivity. Rigidity. Anxiety. All of which can contribute to the potential for extreme distress.
All true. But does the beleaguered DMV clerk really need to know that my son might have deficits in social-emotional reciprocity and in maintaining and understanding relationships?
It stings to introduce my son with the bleakest words about autism. We are forced to use harsh letters like this all the time, endlessly needing to prove the severity of his condition.
I’d much rather tell people about his Ah-Cha!s, but that story is not going to get him the accommodations and services he needs.
I have to talk about the parts of his autism that will impact how he might behave in an emergency situation.
“Emergency” being that I’m not there to interpret for him. His responses under stressful, unexpected circumstances might be dangerous (to himself or others) and might be misinterpreted by those who don’t know about his “functional limitations.”
The risk assessment on my son’s service plan says that “he must never be left alone” in public. As a back-up, we try to teach him to answer questions about where he lives and who to call; we’ve introduced him to programs like “Be Safe”; we support any chance to educate the community about what autism can look like.
And we cross our fingers.
I thought a “flag” on his ID might add another layer of safety, might gain him an extra ounce of patience and compassion in a tricky situation.
But it doesn’t matter that the DMV wouldn’t put “Autism” on his ID even after reviewing this disheartening letter (it’s apparently not a condition on their “approved” list).
For one, that label is too broad.
Autism is ubiquitous now. But it is far from uniform.
Even if the person who needs to see my son’s ID thinks they know autism because of their neighbor’s sister’s daughter’s friend, the autism they’re acquainted with is probably not the autism my son will show them.
His autism is not so easy to flag. It's almost like it takes a full-page bulleted letter to explain it.
We settled on a “See Medical Card” note that may at least give someone an alert.
But in reality, by the time they dig around in his wallet to find the autism-explainer card, his flaps and fidgets and squawks and stomps will alert them, one way or another.
In an ideal world, people would see him and understand.
And he wouldn’t need no stinkin’ badge.
Print autism on a narrow label and stick to your ID card. Or recreate that ID card with what you want printed, and laminate. Nothing is perfect--far from it in fact. I use terms like selective mutism; anxiety disorder or extreme anxiety; profoundly agreeable (the opposite of me). My eldest will agree with anything said when highly stressed. This occasionally terrifies me. I really like reading your work. I don't feel as alone when I do.
Great piece Robin.
It can be so frustrating when doctors complicate things by speaking so diagnostically - which often means cold-heartedly - about a persons condition. And I find it even more frustrating when people are pushed by bureaucratic institutions to prove the severity of their conditions.
Your piece covered both these issues (and much more) very well.
Also, I listened to the audio version for the first time - and I quite enjoyed the experience, you read out loud very well.