Why Our Whole Thinking on Autism is About to Change
It isn’t because of a medical breakthrough.
A lot of people are banking on a big medical breakthrough for autism, with the thinking that they’ll provide the key to more accurate diagnoses, or better interventions, or a hundred other things. It’s a nice thought, especially since there haven’t actually been many major breakthroughs in autism research.
Rather than our understanding leaping forward with new discoveries, we’re just chipping the ball forward a little bit at a time.
Big bets take time. And incremental progress isn’t getting us very far. So if you’re looking to make an impact, the easiest thing to do is connect existing pieces in a way they never have been. That way we can stop thinking in terms of tiny wins, and start thinking in bigger and fundamentally new ways. Who knows, it might even be a little fun.
Here are 5 major trends that are quietly transforming how every one of us thinks about the autism spectrum:
1. We’re Learning Slower than People are Aging:
One of the only constants in autism research is a strong emphasis on studying children. This has produced a ton of progress and valuable information but, in the meantime, the kids have grown up. They’re adults and all we know about are kids. So at the pace we’re going, by the time we catch up to the unique issues of adulthood and autism, we’ll still be totally lost on elderly issues.
It’s time to redirect more research dollars toward adults, and find a few brave public and private institutions willing to spearhead efforts on learning how to best support an elderly population on the spectrum.
Autism quickly impacted everything from education to employment. It is just a matter of time before it will have the same effect on senior services.
2. There’s a Whole Lot of Change Happening:
Autism doesn’t happen in a vacuum. It’s just one piece of an increasingly complex and rapidly changing world. Expert on this new world, economist Tyler Cowen has some tough news for all of us: future economies are going to look very different than they have.
For many autism organizations, this presents a new challenge to the way things have always been done. Some are likely going to struggle with the change, and it’s possible that we’ll see a lot of small organizations close. The remaining ones will get bigger and bigger, expanding their reach by relying on digital forms of support more than the labor-intensive services we’re used to. Changes of this magnitude are difficult for everybody involved, but may be particularly challenging for some on the spectrum.
For better or worse, the challenges and rewards of innovation impact all segments of society.
3. We’re Starting to Fill in the Spectrum:
Everybody is on the spectrum somewhere, as the saying goes. But the general thinking on autism still consists of just two poles. On the one hand is the mathematical or technical genius, and on the other hand is the child who needs nearly constant support.
We’re living in a time when the interests and accomplishments of people on the spectrum are increasingly being recognized. And this is largely the result of folks with ASDs who are making their voices heard in new fields. As the autism community supports these individuals — and as they see success beyond the community — we’ll begin to see the popular dialogue focus less on autism at the extremes and more reflective of its, well, spectrum.
Supporting the diversity of the spectrum will require a diversity of approaches.
4. Research is about to be Overhauled:
Academia is in for a world of change, and this will have a huge impact on how we understand autism. Tightly organized, small scale research studies — while still important — are taking a backseat to studies using data gleaned passively from the real world. Governments around the world are opening up huge datasets to researchers who can provide a real-time picture of the spectrum.
The result is that the time to move from research proposal to findings to real-world impact will be shorter than ever before. This is a very good thing, and will connect the community to research in a way that should have happened a long time ago.
The potential of autism research can only be realized when findings reach the community in a timely and accessible manner.
5. Awareness is so Yesterday:
The simple truth is that people with autism are impacting the world just as much as they’re being shaped by it. They’re forming global companies in Silicon Valley, challenging our approaches to criminal justice, changing our understanding of families in pop culture, and more.
So while autism awareness campaigns have been enormously successful doing just that — raising awareness — we are going to see the movement shift towards recognizing not just the existence of people with autism, but their contributions to the world we live in.
Awareness was a big, critical first step; it’s time we take the next one.
Written by Kyle Crawford, founder of autism.stat and author of the newly released book Connect: Findings for a New Era of Autism, where these ideas are expanded upon. You can pay-what-you-want for the book.
