For a very long time–most of my career–I worked in an everyday world peopled by individuals with mostly-invisible disabilities. Conditions like deafness, blindness, mental handicap, autism, attention deficit, auditory processing disorder, just to name a few. Some disabilities, such as M. S., Down’s Syndrome, or paraplegia, were visible. Most teachers, and sadly most students, knew there were always some children (particularly at certain developmental stages) who made fun of special needs children. Imitating a gait, a voice, using a gesture like that of Donald Trump when he made fun of a journalist. Most of us, adults, and most other children are repelled by such things, and in good schools they are of course dealt with. Parents, too, good ones, teach children about individual difference and honoring individuality. We all have seen examples of what I’m talking about, and most everybody reading this would never dream of condoning or engaging in such behavior. Yet, there’s one area, one really specific area, where many people (scores) that I know well engage in EXACTLY the same sort of judgmental, discriminatory, abhorrent behavior without even knowing it. Intelligent, even brilliant, people. That area is judging adults with Autism Spectrum Disorder for behavior due to their Autism Spectrum Disorder, and ostracizing them for it.
Most of us would never dream of saying to a blind family member, “Go out and get a job! The city was advertising a need for a couple of dozen bus drivers. Why are you sitting home? Go get your licence and apply for one of those jobs!” The idea of doing such a thing would be ridiculous, right? How could you expect someone to willfully overcome a physical disability in order to engage in behavior which is natural and accessible to a nondisabled peer? Yet, all too frequently I hear this sort of thing in relationship to another invisible, physical disability: Autism.
My husband is on the Spectrum. He prefers the terminology, “My husband is autistic.” This is harder for me, because I’m neurotypical, but he feels his autism is such a HUGE part of who he is, it takes front-seat in his self-image. That’s important. It matters. ASD is pervasive. It involves the body, the mind, the soul. I am so proud of my husband, he’s the bravest person I’ve ever met. Every day, he goes out into a terrifying world. He chooses that. It would be much easier to stay behind closed doors. He gets made fun of. For his weight, the way he dresses, the way he speaks, his grooming, his shoes, his interests, etc. etc. etc. To think that he doesn’t know this or that each incident is not painful is to choose not to think. When he was very fat, people (right in our own family) felt free to discuss his weight, right in front of him. Some would even mutter, “Mike needs to push back from the table,” behind his back, never thinking hard enough to recognize that this physical issue might have something to do with ASD. Others openly discuss Mike’s “job situation” at social events, wondering aloud why he wasn’t working full time while in college. The fact that he was able to complete an AS, a BS, an MS, and is working on a PhD didn’t matter: he’s a grown man. He should be working, too. Yet, these same people would never DREAM of walking into the local elementary school and expecting students with autism to participate in THEIR work-a-day world just like nondisabled peers. Of proclaiming, “Johnny! Get up in front of the class and read. Susie, you don’t need that laptop! Pick up your pencil and get to work!”
About a year before she passed away, I had a frank discussion with my mother about this. We’d talked about ASD a bit over the years, as Mikel and I have a twenty-four year old son, Jacob, with ASD, too. Mikel was diagnosed after our son, about twenty years ago. Mother was saying that, at family gatherings, people sometimes ask her why Mikel isn’t working (at that time, he was in graduate school full time), and she didn’t know what to say. Here’s what I told her.
“Tell them that he is taking the time after three years in the Army, a career saving lives as a professional firefighter and paramedic, a dozen years working full-time from home on the stock market so he could be there for our growing family, he is taking the time to pursue an education. Tell them he is amazing. Tell them he has autism, and that he is the bravest person you’ve ever known.” She got it.
Mikel is a fabulous cook. He’s a smart guy, smart enough to know that his autism is the reason family members don’t visit our home. It saddens him for me, and for our children. But, he has friends, and so do I. That’s huge. Good friends. There ARE people–and some pretty incredible family members, too—who see exactly what I cite, above. Mikel’s bravery. His heart. And they couldn’t give a fig that he wears the same thing every day, or gets loud when he talks about music (which he loves) or surfing, or that he’s a great cook but a messy housekeeper.
I stumble sometimes, too, with my expectations. I remember a remarkable moment, when our oldest son taught me just what kind of person we had raised. We were all getting ready for Mikel Jr.’s wedding, and I was arguing with my husband that he must wear dress shoes with his suit. Our son came out of the bathroom, where he’d been putting on his tie in front of the mirror, and said to me, “Mom! Dad’s wearing his flip flops to my wedding! Dad wouldn’t be himself without them, and I want MY DAD at MY WEDDING!”
Our son, Jacob, sometimes has robotic talk (so does Mikel) when he’s disregulated. I’ve seen grownups with brilliant I.Q.s and liberal views openly mock him. It makes me sad. I think about all these things I’ve witnessed and wonder what others go through. What sorts of situations could be eradicated without that horrible, invisible monster, prejudice?
Mikel just finished a year working as a paraprofessional in the suspension room at a local high school. Today, he found out he had to let his boss know he’s not coming back next year. His graduate school program is ramping up, and he has to do some residencies out of town (his field is medicine). At the school he was working at, the administration went through nine teachers this year in AE (the suspension room). It was pretty difficult, as you can imagine, but Mikel stuck with it. Because when he took the job, he promised he’d finish the year. I am so proud of him, even as I steel myself for those remarks, those questions, those judgments. He may go back to working in the public schools after he completes his Doctorate, or he might work in a hospital or health department. Whatever he chooses, I’m grateful to be on this journey with him, to witness his heart, his mind, his work ethic. And I have a feeling he will always be the bravest person I’ve ever known.
I write this to remind us all, Autism is a life-long disability. Don’t stay open for persons with ASD when they are children only to close your hearts and minds to them when they are grown. Please.