When this blog picks up a new follower, I receive an email informing me, and a link to the person’s profile, or own blog. Usually, I take a look. I’m interested to see who’s interested in Martin. Among the followers are fellow special-needs parents, foodies or Paleo-types who I assume like the recipes, “inspirational” folks, and generic bloggers who (I think) follow bajillions of blogs, hoping to procure reciprocal followers.
I also find that this blog is being followed, increasingly, by readers who self-identify as persons on the autism spectrum. I feel honored to have these followers, and I want to find a way to explain that, although my family is working hard to recover Martin from autism, it is not because anything is “wrong” with Martin, or wrong with living with autism. Unfortunately, I’m not talented enough to do that explanation justice; the issue is so delicate, and complex. So instead, I wrote this post—
Last week I encountered a new member at my CrossFit box, in the 8:30 am WOD frequented by parents who have put their children on school buses and are fitting in a workout before heading to employment. The new member was about my age and dressed in exercise leggings, a sport bra, and a tank top. The same way I was dressed. The same way at least two other women were dressed. The new member and I chatted and ended up walking together to the parking lot, where we discovered that our cars were parked next to each other. The same car, except hers is white and mine is gray. We both drive the European SUV model owned by, as far as I can tell, about 10% of the families in our suburban enclave.
Gosh, I thought as I climbed into my standard-issue vehicle, just how much of a conformist have I become? Here we live in a pleasant suburban area, where I stay at home (working some, though!) while my husband commutes to Manhattan. Our yard and garden are landscaped just like all the other houses, with similar plants in a similarly lush but uncluttered configuration. Like our neighbors, we change our front-door wreath by season: We display cranberries for winter, white flowers in summer, orange berries for “harvest season,” pinecones at Christmas. We fly our flag on the Fourth of July, have jack-o’-lanterns on the stoop right now, and will set out a ceramic snow elf after Thanksgiving. Martin and I attend one of the five local churches. Our family shops at the nearest Whole Foods Market, shows up for fairs and events, runs into neighbors at the pubs and restaurants. Through our actions, we have proclaimed ourselves just like everyone else.
The autism universe includes many people who argue against “changing” an ASD child and instead support some form of “neurodiversity,” in which relating to the world in an autistic way is accepted equally with relating to the world in a more neurotypical way. For example, a group called Aspies for Freedom advocates against most behavioral treatments, and all biomedical interventions, for children on the spectrum. The group, according to a blog post in its name, states, “Autism isn’t a tragedy, or a side-effect of genius—it’s a difference to be valued,” and stands against the “idea that being neorotypical (i.e. not autistic, or another psychological neurotype) is ‘better’ than being autistic.”
As I’ve written, I don’t share the view that encouraging acceptance of all persons means we shouldn’t try to heal the autistic child. The best way I’ve got to explain it is this: There are many ways in which I conform to a suburban-mom lifestyle. There are also ways in which I choose not to conform. I’m vegan. I don’t drive that European SUV around town if I can walk or bike instead. The landscaped lawn and plant beds around our house? Maintained by an organic gardener; we pay a premium to avoid the chemicals our neighbors use. When Adrian and I were buying a house, we chose our town, and not the neighboring village, because we value socioeconomic diversity more than having neighbors like our family. In these ways, I allow myself to be an exception.
And then there is at least one way in which, apart from any choice I make, I cannot conform. That’s autism. Because of autism, my son does not attend the local elementary school, does not play in the Saturday morning soccer league, and spends his free time in therapeutic settings.
So there are choices about conforming that are within my control, and choices about conforming that are outside of my control. I am happier when I can choose whether to conform, when it is up to me whether to fit in or to stand out.
That’s what I want for Martin. I want Martin to be able to choose whether he conforms, or whether he rejects expectations. When he enters a party, I want him to think, “Do I feel like working the room, or do I just want to grab food and skulk off to a sofa?” (I, Martin’s mom, usually grab food and skulk off. Any Myers & Briggs devotees out there? I’m INFJ, strong I.) What I don’t want is for Martin to feel like working the room is not an option for him. When it comes time for Martin to choose a job, I want him to think, “What do I like to do?” I don’t want him to think, “Does that job require interpersonal skills? Dynamic thinking? Will enough support be available for me?”
If Martin wants to act quirky, so be it. If he doesn’t want to make eye contact, so be it. If he doesn’t want to play sports, so be it. If he prefers to be alone, so be it. But these should be Martin’s choices, not choices that are made for him because an immune disorder, a medical condition, leaves him clumsy and makes it difficult to relate to others.
Our school district sends a behaviorist to our home each week. Recently I addressed Martin’s social progress by explaining that Martin has reached a point where he asks about other kids and wants to engage them but doesn’t seem to know how. The behaviorist said that wanting to engage is an important step. She advised that I might foster further development by observing other children with Martin and discussing strategies for approaching the children. Martin might find common ground, she suggested, by asking if the other kids like the same things as he does. What does Martin like? she asked. Does he like Yankees baseball, or Mets? Giants or Jets? Superheroes, like Iron Man or Captain America, that sort of stuff? SpongeBob? Pokémon? Disney? Frozen? Bike riding? Karate?
No, I replied. No, no, no, no, no, no, no, no, and no. Martin likes classical music and drawing pictures. He doesn’t watch television or children’s movies.
You’ve got to get on that, the behaviorist advised. Have him do the same things as other kids. Give him some common ground.
That weekend Adrian and I took Martin, wearing a sports jersey, with his feet in brand-new Spider-Man sneakers, to see Alexander and the Terrible, Horrible, No-Good, Very Bad Day, his first children’s movie outing with us. We are helping him conform now, so that later he can choose for himself.
To my readers with autism, thank you for coming to this space. I hope you feel safe here.