Sex, Lies, and Autism Research – getting value for our moneyHow to get tangible benefit from the millions we spend on autism science
The US government is the world’s biggest funder of autism research. For the past decade I have had the honor of advising various agencies and committees on how that money should be spent. Sometimes I’ve been pleased at our government’s choices. Other times I’ve been disappointed. Every now and then I turn to reflect: What have we gotten for our investment?
Autistic people and parents agree on this: The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today. Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.
You can read the full piece here. It’s worth it.
And of course it got me thinking… along similar lines to yesterday’s post, wherein I pondered the irregularity of autistic joy.
Returns on investment. Getting our money’s worth. Having something to show for our investments… What a world it would be, if all the money spent were going to opening up chances for good to flourish, rather than some “war on autism” dedicated to <begin sarcasm> hunting down and eradicating the dread disorder that “steals” perfectly healthy and happy children from their families and tearing apart everything their parents hope for and hold dear </end sarcasm>.
Now that we’re all triggered, let’s take a deep breath and step back from that hijacking of the collective consciousness by ve$ted intere$t$ and pause to actually recognize and laud the truth of Autistic joy.
If there’s one thing that seems to set Autistic people apart from non-autistics, it seems to be the capacity for joy. Honestly, looking at the neurotypical world, all I see is pain. Frustration. Anguish. Predators and prey. And the best that most non-autistics I know can hope for is just a temporary relief from their pain. Drinking. Drugs. Facebook. Yes, they have their friends and family, their careers and reputations. But even those joys seem so fraught with danger and conflict, there doesn’t seem to be much purity there at all. And the times that my non-autistic friends and associates are happiest, are when they’re numbing their pain with a stiff drink or distracting themselves from their pain and fear with some form of entertainment.
Truly, it’s such a dreary world they inhabit. Where’s the joy? Where’s the ecstasy? They don’t seem to have much capacity for it, and they treat my (and other Autistics’) capacity for unbridled joy like it’s a disorder. A condition that needs to be fixed.
How does that work, exactly? I just don’t get it. I would imagine it’s a little like being a really tall person during the 1700s, when people were considerably smaller than they are today.
The thing is, I don’t think non-autistic people are completely devoid of the ability to feel and experience ecstatic joy. I think they have as much capacity as we Autistics. They’re just not allowed to experience it by their milieu. They’re smacked down. Held back. Shamed and blamed and pressured into being certain ways because that’s “normal”. Huh. How ’bout that.
Meanwhile, it just holds them back. It cripples them, not only in their own lives, but also in how they relate to us.
It’s a little like the inexplicable conditioning of women to not really move that much in their lives. I’m noticing this more and more, these days, as I continue to move and be fairly limber and spry and strong, compared to my female peers. I take stairs two at a time. I lift 40-pound water bottles on a semi-regular basis. I rake my own lawn. I shovel refuse into my wheelbarrow and push it to the dump pile down the road. Even though I have issues with chronic pain and scoliosis, I get up and move around with pretty decent mobility.
Meanwhile, my female peers — friends and family — move a lot more slowly than I. Their joints are giving out on them, and they just don’t move as well or as freely as I do. In some cases, I realize it’s because they’ve been focused on being “good girls” for their entire lives, and good girls don’t jump up and run across the room. Good girls don’t take stairs two at a time. Good girls don’t stretch their backs and necks to get them to crack. They might go to yoga. Or take a pilates class. But they don’t really move freely in the course of their everyday lives.
And after decades of being demure, it’s taken a toll. They can’t just hop up and run across the room. They can’t dart out of danger, if something is flying towards them. And they run out of energy pretty quick, pumping themselves up with carbs and sugar and caffeine.
I’m not talking about disabled people who are dealing with physical limitations. I’m talking about healthy, non-disabled people who have actively limited themselves with their choices and behaviors. Because good girls don’t move quickly. Good girls aren’t physical. Good girls don’t take stairs two at a time. That’s not normal. And it’s certainly not free.
I have no idea why some people can’t deal with freedom. Or joy. Or ecstasy. But that’s not really my problem. My job is to make the most of my own freedom, my own joy, my own ecstasy. And to protect and shelter it in the face of all the people who covet it but refuse to allow themselves to experience it.
Autistic joy is a thing. Today, for me, it’s about getting back to my routine, which allows me to do so much more than I could if I had to re-design the schedule for my day, each morning. I have a lot to get done, and my routine allows me to focus on the new and exciting things that interest me, even while I can consistently complete the basics that form the foundation of my life.
With my routine, I can get myself out of bed, wash my face, brush my teeth, and get myself downstairs with relative ease. With my routine, I can get my daily exercise, catch up on my online reading, have my breakfast, and get some writing done before I start my day-job work. With my routine — which other people might consider mind-numbingly consistent — my mind is freed up to do more interesting (and far more complex) things than figure out how to fix my breakfast. With my routine, I can get a whole lot of things done, that most people wouldn’t think are even remotely possible. And there’s a lot of joy to be had in the doing. Having four(+) projects going at the same time, and seeing them all coming to fruition in their own times and their own ways, is a rare treat that isn’t even on the radar of most people I know.
Autistic Routine — as much as it’s pathologized by the diagnostic establishment — is the very thing that makes it possible for me to function at higher-than-average levels.
And it’s something that brings me joy, which should be more than enough reason to depathologize it.
So, yeah. Rather than getting hung up on all the downsides of Autism (and don’t get me wrong — there are a lot of challenges that can make your life really miserable), maybe we need to focus more on the joy that seems to come part-and-parcel with Autism.
Autistic Joy is a thing. Let’s have more of that!