It all has to do with wrong-headed philosophies and misplaced expectations.
I experience autism. I didn’t used to. I used to have symptoms of Asperger syndrome. Then the DSM V came out and relabeled it as a variety of Autism Spectrum Disorder. Suddenly I contracted a virulent case of autism. Now I find myself something of an autism advocate, though not on a large scale, but very much by choice and very carefully.
I mean, I’d like to think I’m pretty remarkable, and would hate to have every compliment appended with “for a person with autism.” I’m fine with “for a person.”
It seems like every day I see a new article about the so-called cause of autism. Gut microbes, hyper-male brain, rapid brain growth measurable by head circumference and, most unlikely of all, vaccinations.
My favorites — literal favorites, not my sarcastic favorites — link Asperger symptoms to high empathy rather than low empathy. For myself, I find this true. I am easily infected by the emotions of others, such as anxiety or grief. This happens implicitly whereas most people might have a better chance of recognizing the sources.
Other people, especially in large numbers, are quite disorganizing for me.
I need alone time and inanimate objects to reorganize.
The thing is, as illustrated by the ironic use of quotes earlier, that there are serious flaws underlying all of this thinking.
The Map Is Not the Territory
First: There are different ways to be autistic. See, the DSM doesn’t describe real things in the world. It provides categories into which we can group certain kinds of observable phenomena. Is depression real? Not the way Ebola is real. Ebola is a phage, a virus. We can centrifuge it out of infected blood, examine it under a microscope, analyze its DNA.
How do you get depression? From a dirty toilet seat at the bus station? If you spend long enough thinking sad thoughts that make you uncomfortable, lose or gain weight, sleep too much or not enough during that period, then you can be diagnosed as depressed. The map, though, is not the territory. The fallacy is that there is a – one, single – concrete process or illness or object underlying the diagnosis. There isn’t. Only statistics.
When it comes to what was once just defined as Asperger Syndrome — now autism — there likely are some real world phenomena related to the diagnostic classification. Many people diagnosed with it probably do not share these fundamental underpinnings of biological or mental process but are diagnosed for convenience. There are treatment programs available for this problem while nothing is available for other sorts of developmental challenge. And the new diagnostic criteria are almost absurdly broad. You might be autistic now, too, for all I know.
The next problem is multicausality. In other words, we can all get to the same place by different routes. Many underlying causes might trigger the same developmental challenges, even the ones with discrete biomarkers. Moreover, it might require more than one trigger to get here – such that genes might be implicated, but only in the presence of a particular kind of infection in childhood, too much sugar in one’s tea, and the constellation Orion being too close to the horizon.
Sorry, I’m being fatuous now. But I don’t want to give the impression I would really support any of the theories out there right now, not very seriously.
There are likely multiple causes for so-called autism. The DSM-V is very vague, vague to the extent that a great number of actual phenomena could find their way under the heading.
There is a whole wide world of possibilities.
Asperger’s, Autism and Intentionless Parenting
My parents didn’t care much about me, and that is a great gift.
I don’t mean to say they didn’t care for me. They patently did. Dad threw opportunities in my path, Mum fiercely defended me against threats I never knew about. For decades I blamed her for me being sent to speech therapy in grade school to correct a British accent when our British life was interrupted by four years of California dreaming. But I asked her about it recently and says this was done against her will.
They did their best to block for me, to leave me facing only the challenges a boy should have to face.
But they didn’t care about me. I was fed, groomed, smooched by grandparents, educated (at times indifferently, but that’s on the school systems again). Sent to Summer camp a time or two, shown wonderful things (Sequoia Redwoods, the Grand Canyon, Stonehenge, Wales, Avebury Circle…). And all of this remarkably devoid of any expectations.
They didn’t hug me, insofar as my dodgy memory supplies. Mum only really enjoys very small children and, when I was a really small child, I reportedly only enjoyed my Granddad. Dad was standoffish, seemingly aloof.
They didn’t speak to faith. They had no expectations that I would grow up Anglican, as the British schools forcefully suggested, or Catholic, the faith professed on his deathbed.
They had in mind no particular career for me. Mum occasionally suggested I not rise above my station, suggesting humility through humiliation. But there was no family trade, no business to inherit, no retirements to be concerned with, no pressure.
Many aspects of my childhood were quite difficult. Children would spit on me from the upper deck of the school bus. I was always prone to being bullied. I stank at any sports on either side of the pond, I couldn’t and wouldn’t defend myself and I looked and acted strange. Moved a lot, losing hard-earned friends and having to relearn difficult new environments time after time.
At the same time, a lot of my childhood was idyllic. The world was no safer then than now but we perceived it as such. I walked or biked everywhere, all over town, all over a dozen towns. Went to London from Ipswich when I was 16 – just hopped a bus, wandered around all day, hopped a bus back. No big deal. I was sent out into the world to explore it and that’s just what I did: explored. Dawn to dusk, plying Shank’s Mare.
Autism and Glassy-Eyed Insinuations
I rankle a bit reading all of the theories and suggestions about autism. They’re full of innuendo. Especially the anti-vax movement, the Michelle Bachman type of glassy-eyed insinuations. The implication is always that autism is bad.
We are so interested in the cause of autism because we think it is bad. A disease. Something that causes suffering. Something its victims suffer with.
I’d like to call bullshit on all of that.
Autism, more than being a genetic deficit or a disease or a disability, is more likely a normal outcome of human variability. A place on one tail end of a bell curve.
The problem here is expectations.
We grieve the death of a child more than the death of any other person, except maybe a celebrity. Why? We haven’t had much time to get to know a baby. A baby never did anything for us, or changed the world, or offered us comfort when we were down. Didn’t romance us or make a life with us.
In a sense, we aren’t mourning the lost child, but the lost potential. All the hopes and dreams and aspirations and expectations we put into that person, our perception of that person.
China, 2012. A new friend has taken me out for massages, something I could never have tolerated in my childhood but learned to enjoy as an adult. We’re sharing our hearts, one of those weird unguarded moments of unexpected intimacy between virtual strangers. She says she knows a lot of children of disability through her church, and she cries whenever she sees them.
“Why?” I ask, a little incredulous.
“Because it hurts me that they suffer.”
“Wow. I love you for that. But how are they suffering?”
“They are disabled.”
There’s the rub. Developmental disabilities – including autism – do not cause us to suffer. We are not victims of them. They cause you to suffer, because we do not match the expectations you have – a perfect child to follow in your footsteps and have perfect friends and a perfect job and one day give you perfect grandchildren. And you cause us to suffer, by treating us poorly.
By trying to make us like you, rather than trying very hard to understand the individual needs of the individual person in front of you.
Loud noises. Frequent changes of scenery. High-pitched sound. Too much odor. Too many people for too long. Vague expectations. Vague timeframes. Saying “literally” when you mean “figuratively.” All right, I threw that last one in just to confuse you. But it does irritate. The. Crap. Out. Of. Me..
Not everybody needs a job. Me, I avoid saying Asperger’s disorder, or autism spectrum disorder, because I’m not really disabled. I found a wife who puts up with me (she often says “I love you,” and I wonder why). Made a son who I think is magnificent. Finished 20 years of school, so no educational problems. And I found a job where my natural proclivity to replace social interaction with the giving of information is a plus rather than a detractor – teaching psychology at a college level is a dream.
So I work. Pay bills. Slog through a life of too much exposure and suck it up the best I can.
Other people can’t do that. And you just have to give up your dreams for what they would be when they grew up. That stuff wasn’t going to happen anyway, you know. People fall in love with who they want, not who you imagine; they take the job that turns them on, not the one that aggrandizes you. Hate your sport or your sports team. Vote against you in the election. Come to your faith much later in life, and then with a calm and serenity you never imagined.
So let all that grow.
How To Love Your Autistic Kid
Find the person, the actual person who was born to you, and love them. Fiercely. Without expectations.
Let them surprise you.
I worked for 15 years with adults who experience developmental disabilities. Now at least 40 percent of these disabilities were caused by expectations: low ones. Warehoused for decades in state hospitals that allowed no actualizing of potential, many of these women and men were deemed much too broken to ever manage in communities. And we said, well, we’ll just see about that.
Giving people the freedom to choose, to go where they want, do what they want, work if they want to, eat what they want, see who they want – not even giving this freedom but failing to prevent its manifestation with our controls, our expectations, showed me miracles.
People who had been silent forever, suddenly making their wishes known – with a sign, or a picture in a book.
People who had been unremittingly violent becoming peaceful, greeting caregivers with hugs and smile.
People drugged into stupor, suddenly showing they can speak near-perfectly when the oppression of their drugs is lifted, their one-word sentences (coffee!) replaced with dialogue.
It Isn’t Autism That Makes Me Suffer
I don’t suffer because I am autistic. I suffer because the world demands we all be alike, think alike, act alike. As a child, we didn’t have diagnoses. I was just the weird kid everyone hated, except the other weird kids. But my parents had no particular expectations, so I was able to explore, learn, chase what I wanted even when that was pretty esoteric. Thanks, Mum.
I was able to become a doctor of psychology when I decided what most interested me in all the world was you. Not out of a failure of empathy but out of a surfeit of it. I feel what you feel and want terribly to understand it, help you with it, bear it with you.
Autism isn’t some horrible disease to fear but a way, many ways, of being. Different for every recipient of this sometimes barbed gift. You might find that autism is difficult in your children. You might wish you could cure or prevent or eradicate it. But I wouldn’t give it back, not ever. And many of your children cannot answer the questions you would have to ask them: are you content? Are you suffering? Should we try to take away from you this way of being?
I propose radical openness. I know you love your kids, autistic or not. And if I asked whether you accept them, you’d say yes, of course I do.
But I want you to radically accept them. And that means letting your dreams die. Let them go. Your children’s lives were never yours to dream of anyway. To know the person you are with, you are going to have to give up who you wish they could be.