Sex, Lies, and Autism Research—Getting Value for Our Money

The U.S. 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. As an adult with autism, sometimes I’ve been pleased with 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 their parents tend to 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.

It would be one thing if massive help was just around the corner, but it’s not. There are no breakthrough medicines or treatments in the pipeline. Autistic people still suffer from GI pain, epilepsy, anxiety, depression, and a host of other issues at the same rates we did before any of this research was funded.

I don’t mean to suggest that nothing has been accomplished. Scientists have learned a lot. They know more about the biological underpinnings of autism. Researchers have found hundreds of genetic variations that are implicated in autism. We’ve quantified how autistic people are different with thousands of studies of eye gaze, body movement, and more. Scientists are rightly proud of many of their discoveries, which do advance medical and scientific knowledge. What they don’t do is make our lives better today.

Why is that?

In the past, I’ve written about the idea that taxpayer-funded research should be refocused on delivering benefits to autistic people. What I have not written about, is why that hasn’t happened, at the most fundamental level.

The answer is simple: Until quite recently, autistic people were not asked what we needed.

There are many reasons for that. Autism was first observed in children and no one expects children to have adult insight and self-reflection. When autism was recognized in adults, they were assumed to be too cognitively impaired to participate in conversations about their condition. Finally, in the spirit of the times, doctors often assumed that they knew best. They were the trained professionals, and we were the patients (or the inmates.)

So doctors studied every question they could imagine, and then some, seldom seeking our opinions except in answer to their research questions. They assumed they knew what “normal” was, and we weren’t it. Countless millions went down the rabbit hole of causation studies, whether in genetics, vaccines, or other environmental factors. Don’t get me wrong—the knowledge we’ve gotten is valuable for science. It just did not help me or any autistic person I know.

Millions more have been spent observing us and detailing exactly the ways in which we are abnormal. Only recently have some scientists begun to consider a different idea: Perhaps “normal” is different for autistic people, and we are it. Again, the studies enhanced the scientists’ knowledge but didn’t do much to help us autistics.

Then there are the educators and psychologists. They observed our “deviations” and then considered therapy to normalize us. That led to ABA and a host of other therapies. Some of those have indeed been beneficial, but the money spent on beneficial therapy is just a drop in the bucket when considering what we taxpayers have funded overall.

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We can tell you what our problems are, in many cases very eloquently. I’m not going to restate all our needs here. I’ll tell you this: Whenever this topic comes up at IACC (the federal committee that produces the strategic plan for autism for the U.S. government), the priorities of autistic people seem rather different from those of the researchers our government has been funding for so long.

Autistic people have many disparate needs, but they all boil down to one thing: We have major challenges living in American society. Medical problems, communication challenges, learning difficulties, relationship issues, and chronic unemployment are all big deals for us. The issues are well laid out and many.

Before autistic people began speaking out in great numbers, all we had was parent advocacy. We should not dismiss that, and parents still have a role today, particularly in advocacy for small children and children who are older but unable to effectively advocate for themselves.

Even as we thank parents for their service, it’s time to recognize autistic voices (some of which belong to parents too) should be taking the lead.

As much as parents did for us, they also unwittingly contributed to harm. Parents misinterpreted harmless stimming and encouraged therapists to suppress it, leaving us scarred in adulthood. Many autistics of my generation remember being placed into programs for troubled children with parental encouragement in hopes we’d become “more normal.” We didn’t. Parents have given us bleach enemas, and some of us have died from misguided chelation and other treatments to “cure” our autism.

I don’t blame parents for any of that. They did their best, given the knowledge of the day. But it’s a different day now. The children who grew up being “normalized” can talk about how it affected them, and parents and clinicians of today would be wise to listen.

Autistic voices are finally speaking in large numbers and it’s time to pay attention. No one else knows about life with autism. Parents and nonautistic researchers are sometimes listening. Hard as this may be for them to hear, they are always guessing. With autistics speaking out all over the world, that’s no longer good enough.

For the first time, IACC has recognized this in the 2017 Strategic Plan Update. They say it’s time for a paradigm shift in how we do research. We need to focus on the needs of people living with autism today. That’s a realization that I appreciate, and it’s long overdue.

So what’s the answer to why we’ve gotten so little return on our autism research investment: No one asked the autistic people what we wanted. It’s that simple. Had we been able to articulate our challenges, with the framework of knowledge we have today and had we been listened to, we’d be in a very different place today.

Today is gone, but tomorrow isn’t here yet, and it can be different.

(c) John Elder Robison. The opinions expressed here are my own.