The month of April is Autism Awareness month, and April 2nd is the big day to “light it up blue.”
A year ago when I was first learning about Autism and Asperger’s Syndrome I was eager to participate and proudly display all the blue lights I had bought, wear my new blue Autism Speaks shirts and paint my windows to reflect that I was doing this for a good cause. I decorated with more vigor and pride than Clark Griswold at Christmas. I finally felt like I belonged to a group of people who understood me and all my quirks and differences, but I quickly realized I was blinded by the same new, hopeful ignorance that many people have when they get launched head-first into the Autism community.
Since April of last year I have read countless books on Autism (close to 30 for those counting along at home) and spent who-knows-how-many hours looking at peer reviewed articles and blogs and information published online. You might understand my surprise when one article suddenly called out Autism Speaks for being anything but supportive of people on the spectrum. That was a shock. They are all over the Internet and media with the mission of discovering breakthrough Autism research and tirelessly supporting people on the spectrum. Their puzzle piece is a staple in the community like a cherry on a hot fudge sundae. How could they not be a champion of Autism resources and advocacy? I realized then the issue wasn’t that they weren’t helping people with Autism; they were only helping children and families who had young children with Autism. What about teens and adults? Autism doesn’t just go away after 12 years and let teens resume a neurotypical life. It was disheartening to say the least to realize that I had gone out of my way to support and cheer on an organization that didn’t much care to help adults on the spectrum like myself.
Enter the new CEO Angela Geiger– she must have heard the cries of outrage in the personal blogs and pages of Autism advocates who were lost in the former shadows of the Autism Speaks mission. All of a sudden adults and teens were being mentioned, new resources were popping up, and the website began to slowly update links to include new information acknowledging our existence as it previously hadn’t. (Don’t get too excited, one page doth not a lot make.) Coincidence? Maybe… maybe not, but the fact that they are beginning to include the entire life of people on the spectrum from early childhood to adults is progress, right? Well, it depends on who you ask.
If you ask me (and why wouldn’t you since you’re here to read my blog, am I right?) the biggest problem I have is the fact that Autism Speaks is trying to keep a legacy going of three organizations which wanted to cure Autism principally. I don’t have a problem with some of the research going on to understand Autism. I think it would be awesome to have my brain scanned in a functional MRI machine to see what lights up when they trigger different areas. I have a theory that my brain is probably 20% cooler than a neurotypical brain, but it’s all just speculation at this point. There are some areas of research that will aid in helping people on the spectrum become more independent and help us to understand our weaknesses in order to better use our strengths. I don’t deny the potential for helpful research, but the thing that really gets my blood boiling is this obsessive push for a cure and to eradicate all ASDs completely. Autism is a double-edged sword. My greatest strengths are because of my having Asperger’s Syndrome, just like my greatest weaknesses are also caused by it. I wouldn’t be anything like the person I am today if I didn’t have an ASD. The person that everyone knows and loves would cease to exist without Asperger’s Syndrome because it is as much a part of me as my own skin and DNA. I understand I am pretty successful and in the big picture I am pretty good at coping and blending in with the neurotypical population, and I understand that there are those who struggle to the point a cure would be a mercy to end the pain and frustration in not being able to communicate effectively and relying on others to survive. However, the current ideology that Autism needs to be eradicated completely is not coming from a place of acceptance and understanding, but rather from the misconception that neurotypicals have about people on the spectrum. Autism Speaks wants to find the cure for Autism, but do they want to cure all of us to “save us” from it? I think if they truly got to know those of us on the spectrum they would find that a large majority of us do not need or want saving. Being Autistic is all we know how to be, and while some of us struggle to the point a cure would be welcome, there is an even larger portion of us who wouldn’t know who we are without Autism.
What good is bringing awareness to Autism if that is all it is? We don’t need our own version of Steve Irwin to jump out of the bushes and report to those in the immediate area that, “Crikey, mate! There’s the rare and illusive Autistic adult! Look at him avoiding eye contact and flapping his hands! He’s a beauty!” That might be entertaining to some people, but it serves no purpose. What we need is understanding of the people on the spectrum by the people who aren’t on the spectrum. Try spending a month getting to know someone on the spectrum and communicate with them how they communicate whether that is by talking normally, typing or writing correspondence, or coloring pictures. Maybe it isn’t communicating at all but sitting and sharing space with someone who is lonely. That is the kind of thing we need.
Autism Speaks does have good resources, and they are a decent starting block to getting some of the information and the statistics about Autism. They may even come out with research some day that does allow for the better understanding of Autism, but they are not the only way to learn about it and are certainly not the only organization which supports people on the spectrum. The best resources are speaking to individuals on the spectrum, sitting in on group meetings to see what people with Autism have to say, or doing a bit of research to find organizations run by people with Autism like GRASP or Asperger Experts. If you were a journalist wouldn’t you want to get your information straight from the source and not from someone who talked to someone who knew someone else that had the information? If you want to light your house up blue or wear your blue shirts or join a walk for Autism that is perfectly fine but don’t do it for us. Support us this month (or any time because there isn’t a rule you have to do it in April) by getting to know us, accepting us as we are, and being understanding that our brains work differently, and the way we do things might not be ideal or make any sense to you. Donate to the organizations which put effort into resources that help us out now with the things we struggle with all our lives rather than investing your hard earned money and hope into trying to cure Autism when we don’t necessarily want a cure. When in doubt ask questions and don’t be afraid to do your own research.