If we don't want a cure - why study autism?
--- Kajsa Igelström ---
Many autistic adults that we've been in contact with take a very strong standpoint against autism cures or treatments. Extraordinary Brains has been focusing on experiences rather than interventions, but we are interested in the brain too. In this article, I'll tell you why I believe that brain research on autism can revolutionize the lives of many autistic people, in the long term. Not by curing or minimizing autism, but by improving lives in other ways.
The problem with autism cures
By definition, our Internet-based platform limits our interactions to autistic individuals with good verbal abilities and the motivation to reach out and communicate. Thus, a parent with a severely struggling child, or an autistic adult who can't or won't communicate online, may very well wish for a cure, and a number of our own participants do too.
We view everyone with compassion, and I will boldly state that I think that those who want a cure deserve to be heard by researchers too. But it's not my personal goal as a scientist, and Extraordinary Brains will never aim to cure autism.
It is not difficult to understand that the concept of a cure can be upsetting. Autistic individuals continuously have to fight for acceptance, both from others and from deep within themselves. Today's adults were generally diagnosed late, often after many years of suffering. For many, the key to better well-being has been to find self-acceptance, and an important mission of the autistic community is to advocate for the right of autistic people to be just the way they are.
I, too, think that autistic people are intrinsically great (extraordinary in fact...) just as they are - without being cured, or changed, or improved.
I just want everyone to feel better.
The difference between treatments and treatments
This is a point that I would like to emphasize. I'm sure there are some scientists out there who aim to find a treatment for autism in the same way that you find a treatment for cancer: a therapy that somehow takes away the actual autism.
The majority of neuroscientists, however, use the phrase "treatments for autism" without meaning it in a literal way. In the past, I have used these words myself, but to mean "interventions that help autistic people feel better, because they feel like s**t a lot of the time".
Using the phrase "finding treatments" instead of a phrase along the lines "figuring out ways of helping out" may have been a huge mistake made by hundreds of scientists who didn't realize that the literal interpretation of it would cause autistic people all over the world feel less accepted as human beings.
It's critical that the scientific community understands the power of words, and learns to speak the language that autistic people prefer and can identify with.
So when it comes to autism treatments: Extraordinary Brains definitely wants to help, but not by removing or minimizing autism itself. And, as outlined above, I do suspect that a relatively simple semantic misunderstanding underlies some of the controversies surrounding "autism treatments".
Why do neuroscientist want to meet autistic people?
Autistic people are regularly recruited for scientific studies that focus on psychology or neuroscience. Sometimes these involve giving blood or other samples, sometimes they involve questionnaires or interviews, and sometimes they even involve brain scans. Luckily, real research is always voluntary, but for those who do participate, the concept of being recruited as a "patient" may still trigger that feeling of being overly pathologized and unaccepted.
The main reason for the scientific interest in autism is that many, many autistic people feel terrible. It's extremely common with poor mental health and poor general outcomes (e.g. unemployment). There are severe medical co-morbidities, such as epilepsy, that may be caused by the brain variations that also underlie autism. And the autism spectrum is so insanely broad, and autism is so insanely complicated, that we are far, far from understanding these brain variations.
While it is true that life would be a whole lot easier for autistic people if society could simply accept that they function in a different way, there are some aspects of autism that may not be possible to address in that way.
For example, sensory sensitivities can be so debilitating that it's impossible to live a full life, even in an adapted environment with accepting people. Attentional and executive difficulties can make daily chores so exhausting that there is no energy left for anything else. Certain types of social challenges can cause utter isolation for some people, regardless of the behavior of people around.
So while there is a group of autistic people who could achieve sufficient well-being through social acceptance and accommodations, this really isn't true for everyone.
That's where neuroscience can help. If we can understand the brain basis of, for example, sensory, social, or attention problems, we may be able to develop strategies to target those particular challenges, with great specificity. I myself am #ActuallyAutistic and am thankful for my weird and wonderful brain - but if I could get a treatment that just turned down the sensory volume a notch, I would accept it in a heartbeat. If my sensory sensitivities could be treated, I'd be able to do more neuroscience without perpetually postponing the laundry or crashing from exhaustion after every conference.
We call this project Extraordinary Brains, because autism, ADHD and other neurodevelopmental conditions do give people a unique mixture of strengths and weaknesses. Your brains are extraordinary in the sense they're amazing but also in the sense that they're out of the ordinary. You may be struggling, because the world isn't always easy to live in and interact with, and you may have neural limitations that stop you from living life to the full.
We want to help minimize your struggles, and preserve all your uniqueness and all your strengths. The Extraordinary Brains Project aims to reach out to as many of you as possible to take part of your views, experiences and opinions, and also start taking baby steps towards understanding the brain well enough to come up with some seriously badass ways of helping out.
We have a long journey ahead of us and we have to work together. Please keep sharing your priorities and opinions – we take them all into account when fine-tuning this young research program and planning our future studies.