Original post from New Scientist
‘……………By John Elder Robison
Too much funding goes on studying autism’s biology and not enough on making life better for those living with it, says John Elder Robison, who has autism
This week I fly across the US to speak at the International Meeting for Autism Research in Salt Lake City, Utah. I’m not a scientist; I’m a 57-year-old with autism.
For three days, the conference will be the world’s high temple of autism science. Researchers from around the world will converge to share ideas and present results. Everyone with a personal stake in the subject should pay attention to what goes on there.
Scientists ask questions. It’s in their nature. In medicine the questions tend to be directed toward curing disease, or relieving suffering. Autism may not be a disease, but plenty of us have suffered from it – despite the many gifts it can confer – and we look for relief.
Some of us have difficulty communicating. Others have medical problems that seem tied to autism. Most of us live with some level of anxiety and depression, and many of us are touched by epilepsy, dyslexia or Tourette’s.
Some aspects of autism are simple. Many of our challenges are obvious. But as obvious as they seem, none has yet been successfully resolved even with billions of dollars spent on research and a decade of time. That’s a real tragedy, because it did not have to be that way, and if we act soon, tomorrow may be different.
Part of us
The medical science community first approached autism as a disease to be cured. And that’s the problem. Not all autism falls into that category. Some springs from de novo genetic changes, and comes out of the blue to cripple us. But other autism seems woven into our genome. All of it – as far as we know – manifests very early. By the time we are adults, it is part and parcel of us, and not “removable” in any practical sense.
Many of us recognise that, but talk of autism as an epidemic remains. Fundamental biological and genetic studies that seem geared to preventing autism get the lion’s share of research funds. All the while, people with autism continue to suffer from anxiety, medical complications and social problems. Thanks to that, we remain excluded and marginalised.
It’s time for that to change. We are beginning to advocate for ourselves and ask for a shift in the balance of research dollars. Different advocates have different priorities but one thing we agree on is that we want help now. We want our dollars spent on research that will lead to better lives for those of us who live with autism today.
I am going to the conference in search of knowledge, but I also carry a message. As a person with autism, I see needs all around me. I ask that the agencies who fund autism research take note of the autistic population speaking out, and direct their dollars toward the problems that press us today, and not some abstract goal of autism elimination at some future date. That thinking is outmoded, and no help to me or anyone else who lives with autism.
We are the population you are trying to help, through your science. Listen to us.