Oh, look, the White House is lit up blue! And the Empire State Building, and Niagara Falls! And the Israeli Parliament Building, the Emirates Spinnaker, the Panama Canal…It’s World Autism Awareness Day, and as the mother of a child with autism, I can’t tell you what a difference it makes to see so many world landmarks take on the color of liquid laundry detergent.
No, really: I’m not kidding. I can’t tell you what difference it makes, because I have never been able to figure it out myself. I’m sure it must make some difference or everybody wouldn’t be so thrilled about it every year. But if World Autism Awareness Day 2017 turns out to be anything like World Autism Awareness Days 2010-2016, my own experience of autism will remain remarkably unchanged before and after the light show.
Of course, there's more to it. World Autism Awareness Day is just the kickoff for National Autism Awareness Month, and for the seven years since my son was diagnosed, this has meant that I slip into the role of Autism Awareness Mom. Just as I pull out the ornaments before Christmas or the flags for the Fourth of July, I dust off my trusty sheet of facts and statistics about my nine-year-old, moderate-to-severe son’s condition. I pick out a few choice items from this year’s collection of personal anecdotes — harrowing, hopeful, hilarious; it’s quite a drawerful. I dutifully reiterate that autism is not caused by vaccination or liable to be cured by any vitamin, tent, or horseback-riding regimen (though many things have turned out to help alleviate some symptoms in some people, which is why so many parents try so many things.) And I blend it all into an article or series of articles designed to do the familiar job: raise autism awareness in people who, unlike me, have not had autism awareness instantly, permanently and pervasively raised for them.
Every other year, this has struck me as a necessary, worthy endeavor, one that ideally blends with countless other efforts to foster general understanding and, better yet, to raise money. No doubt in 2018, I will get right back to it.
This year, though, I want to go another way. Rather than tell the world about autism, I find myself wanting to say what autism has given me to know about the world.
You see, awareness works the other way, too.
Like a thousand other facts of life that anyone could name — chronic physical conditions for sure, but all kinds of other challenges too — autism is a shock-and-awe variety of invader. It can creep up little by little or hit like a burst of bombing. But once it is in your life, it is your life.
At first, the occupation is cruelly totalitarian. Autism dictates whether you sleep and what you dream. It shreds your plans, strains your relationships, exhausts your energy, grabs your money by the fistful and gobbles it right up. At times, it treats you like laundry: douses you, spins you, then hangs you out to dry.
Then it settles, or you do. In some elemental way, you give up — not on your child, but on the idea that this is a bump in the road; that just as your child is “delayed,” you are too, but sometime pretty soon, you’ll snake around this three-car pileup and both be on your way. You don’t simply accept that the pileup may be permanent. You realize that there is no road. You see, more clearly than you could see before, how very many people in the world are walking along without any road; how you can probably walk without one, too. How you’re going have to.
This is terrible, but also somehow fortifying. It’s an autism ambivalence; one of the many of which your life comes largely to consist. The whole thing goes from feeling tragic to feeling tricky. Like the condition itself, living with it gets better — but also worse. Yet better. It forges you full of iron even as it shoots you through with holes. You come to feel that your child’s autism isn’t making or breaking you. It is making and breaking you.
At least, autism has done all that to me. So of course it has changed how I see.
This month, hard as it will be to pull myself away from pondering all things Trump, I am going to devote Knickertwist to a series of reflections on what autism has made me aware of about our society, culture, and politics. These reflections will not, for the most part, be shaped in terms of how our society, culture and politics — in other words, how we — deal with autism per se. After all, that is just a function of how we deal with everything.
For starters, I’ll go back to what bothers me, ungrateful though it must seem, about all this lighting-up of the world in autism-awareness blue.
Over the years I’ve lived in the world of autism, I have become keenly aware of the limits — the dangers, even — of awareness itself. It is not very nice to view millions and millions of wonderfully well-intentioned Americans as a nation of awareness whores, but it has come to feel pretty accurate. Give us a lapel pin and a dream, and we’ll do awareness with just about anyone. We have racial awareness, gender-equality awareness, LGBTQ awareness, environmental awareness, ACLU awareness and of course, myriad disease-and-disorder awarenesses of which autism is just this month’s headliner. We have awareness-triggering Twitter feeds and Facebook pages and celebrity spokesmodels. We have awareness days, weeks, months and years. Of course, it's hard to say a word against this: obviously, apprising people of a problem is an essential first step to solving it.
Sometimes I wonder, though, whether putting quite so much emphasis on this step one actually makes it easier to forget steps two, three and beyond — the steps through which the issue, once duly illumined, must proceed in order to be addressed. Sometimes, it feels as if by “raising awareness” we aren’t so much moving toward a solution as buying ourselves a certain comfort level with the problem; pricking our consciousness, and our consciences, for a designated moment, then dulling ourselves right back into unawareness until next year.
Very few people will say, or even think to themselves, “I don’t care about autism/hunger/cancer/cystic fibrosis.” But an awful lot of us, I think, do essentially say, “Of course I’ll buy a ribbon! But don’t ask me to give up anything I value.” Not real money, not real time, not real political or ideological sticking points, not our own real standing in the pecking order of priorities, not real patches of our communities, not real space in our heads. Not anything of value.
I mean, honestly: at this point, is someone unaware of homelessness? Of poverty? Of Alzheimer’s, diabetes, breast cancer, heart disease? Of course not. The problem with such challenges is almost never that we don’t know they exist. It’s that we don’t care enough to develop anything like a humane, comprehensive, systematic approach to addressing them.
When it comes to autism, I truly thank President Trump for turning the White House blue on Sunday. But I’d be unspeakably delighted to trade that for a single tweet from him recanting the anti-vaccination panic he has helped to revive. I’d also prefer a rethink of a budget that will effectively slash already-pitiful services for people with autism, not to mention various forms of broader assistance to their families, many of whom have been financially decimated by this disorder.
That’s not even counting the matter of research. I am sure that among the Americans who will very kindly be giving donations to autism-related charities this month, there will be some who cheer on the budget hawks whose moral and fiscal principles have brought us such drastic developments as the government shutdown of 2013 and the sequestration that is still biting today. Three cheers for ideological purity. But so far at least, these folks haven’t halted Obamacare. They haven’t de-funded Planned Parenthood. But thanks to the effect of their actions on the National Institutes of Health alone, they sure have scuttled a nice bit of research into why my son is struggling. They sure have tossed some scientists to the curb, and they sure have deprived other scientists of the runway they need for their work to take off. How many autism-puzzle-piece bracelets and tee-shirts are we going to have to sell to make up for that? And how many other families dealing with how many other bio-medically based challenges can ask the exact same question?
Please understand, my point is not that all awareness should lead to stratospheric levels of government spending. My point is that all awareness should lead to something: some meaningful determination of what does and does not deserve to get funded, codified or otherwise acted upon; some way to protect that determination from falling victim to whatever politician feels like throwing a tantrum (lookin’ at you, Ted Cruz!); some honest acknowledgment of what that determination means for the people most affected. As it is, “awareness” too often serves as a decoy that allows all of us, right and left, to sashay around fights we’d rather not have, priorities we’d rather not clarify, choices we’d rather not make. Indifferences, perhaps even cruelties, that we’d rather not admit to.
In the spirit of the awareness game, think of it as a fun run. At the starting line stands a huge crowd of sunnily optimistic participants who are edifyingly aware of autism-cancer-violence-against-women-hunger-you-name it. Then the race begins, and not a quarter-mile into it, runners are asked to peel off if they mind the fact that more resources for this month’s worthy cause will mean fewer resources for next month’s. A little further on, participants are told to stop if what they support today is on course to clash with something they will oppose tomorrow, whether it’s the harvesting of stem cells in connection with the biomedical research they’re running for, or the building of alternative-energy windmills along their summer seascape to slow the global warming they’re running against. Presently comes the point where the politicians in the pack need to drop out if they're prepared to sacrifice the cause in question to whatever comes to constitute their short-term self-interest. Then suddenly, out of nowhere, the race is set upon by a whole bunch of random disruptions -- a natural disaster, an uptick in terrorism, a celebrity's misfortune suddenly sexing up some other malady -- that no one even imagined at the start, but that could ruin the whole event. And on and on to the finish line, where almost nobody is left except a handful of zealots fighting over tangents.
Don’t get me wrong. If you are someone who could ignore autism but choose to make yourself aware of it, I thank you from the bottom of my heart.
Even so, I can't help what's going through my mind: awareness isn’t everything. In fact, once an issue has been around awhile, it’s barely anything.
I’m painfully aware of that.