It takes a lot to seriously tick me off. Sure, I get annoyed easily by silly things, but legitimate anger does not regularly flare inside of me.
Recently, I had an unfortunate encounter with someone who works with an organization that tells parents they can cure their children’s autism. According to them, they have tasks that help “re-train” the child’s brain and reverse and eliminate their autistic characteristics.
I knew where she was going the second she began to speak to me. She had the look and tone of a salesperson casting about trying to find their angle. I was determined to give her as little to work with as possible.
Her: I read an article recently that said they can’t tie autism to any one gene or chromosome. If genetics isn’t the cause, that means autism isn’t permanent. It’s completely reversible.
Me, refusing to acknowledge the legitimacy of the conversation: Oh.
Her, trying to find a way to engage me further: Yea, did you major in biology? What’s your background?
Me: No, I’m actually a sibling. So you could say I have lifelong experience.
Her: Oh! How severe is your sibling?
Me, (I hate this question): Errrr.
Her: Like can he talk?
Me, stiffly: Yes. Not a to and fro conversation like we’re having, but yes.
Her: Well you should check us out. I’m sure we could make great progress with him. Don’t give up on him!! There’s hope he could change!!!
Me, wanting to punch her in the face, but also wanting her to leave immediately: Mm.
Her, seeming a bit dejected that I’m not thanking her profusely for this wondrous nugget of knowledge: Well, here’s my card.
Me, gritting my teeth and forcing myself to take the proffered card: Thanks.
What I actually wanted to do was lunge across the table, throttle her with my bare hands, and shriek HOW DARE YOU at the top of my lungs.
How someone who does not know my brother AT ALL could presume to tell me not to “give up on him” is the pinnacle of ignorance.
You don’t know him. You don’t know our family. You don’t know the strides he has made since he was diagnosed as a toddler. You know nothing.
You don’t know that a better way to engage someone about their loved one with Autism Spectrum Disorder (ASD) is to say, “So tell me about him. What’s he like?” Not, “How severe is he?” You’re automatically framing the conversation to be a negative one on the part of the person you’re speaking with. They’re on the defensive, feeling like they have to justify their sibling and the “category” in which he falls.
And the cure narrative. Oh the cure narrative. I understand the allure of it. I understand that for some parents, this is the goal. I could be wrong, but I think many families don’t want to necessarily “stamp out” the autism, but they want their kids to be able to take care of themselves. Whether that’s on a basic level like feeding, bathing, and sheltering themselves or on a more advanced level like having a career, forming and maintaining social relationships, etc. I think it varies from family to family.
I understand that some kids with ASD do make tremendous strides and, when re-evaluated in late childhood or their teenage years, no longer meet diagnostic criteria for ASD. Do I think that the ASD has been “wiped clean” from their system? No. I think their ASD traits are significantly minimized because they absorbed all the therapy that was thrown at them. In these cases, I think these kids received the optimal therapy at the optimal time, but I also think that their “profile”–the essence of what makes them them–contributed to the outcome; like they were inherently programmed to be extremely receptive to evidence-based interventions.
Dude received great therapy. He received it fairly early, too, which was a miracle given that he was diagnosed in the early 1990s, a time when there was limited awareness of autism. But it wasn’t his destiny to reach “optimal outcome.”
For this woman to suggest that I do not accept or love him (“Don’t give up on him! There’s hope!”) because he very much has autism.. well, let’s just say I can STILL feel the adrenaline pulsing throughout my body.
The fact of the matter is, if you took away Dude’s autism, he wouldn’t be Dude. You would erase the essence of who he is. When you push the “cure” narrative in the manner this woman was, you’re essentially saying, “Yea you’re great and everything.. but I don’t like this major chunk of who you are and I would make that part of you go away in a heartbeat if I could.”
It’s offensive. It’s degrading.
It’s like saying, “You’re super great and everything, but I don’t like the fact that you’re gay. If we could knock that out of you, reverse it (because it’s totally reversible), that would make me a lot more comfortable.”
These are all the things I wanted to say to that woman. But sometimes, you just have to grit your teeth and say as little as possible. When there is such a wide gulf between where you’re coming from and where they’re coming from, the chance that there is going to be a rational, fact-based conversation is slim to none (ASD “has nothing to do with genetics.” HA! Ok lady, you keep on believing that).