Autism Turned My Son into a Superhero!!!
by Ben Mills
OK… do I have your attention?
The month of April is now officially recognized as ‘Autism Awareness’ month. A big part of the movement for ‘Autism Awareness’ is the “Light-It-Up-Blue” campaign which is primarily sponsored and marketed by the largest autism organization in the world, Autism Speaks. The blue puzzle piece pin has become a common accessory during the month of April. This awareness effort is very similar to what the Susan G. Komen Foundation has done with Breast Cancer Awareness Month in October and the barrage of pink ribbons that are worn during that month.
I am a father of 6 children. My oldest is a 13-year old named Adam. Adam has multiple disabilities and falls under the “autism spectrum.” We noticed Adam’s autism at an early age. Over the course of his life, Adam has received physical, speech, occupational and ABA therapy to help with his mental and physical disabilities. I will discuss the “autism spectrum” in more detail later on, but Adam falls somewhere in the middle of this spectrum. He is not high-functioning like people with Asperger’s and he is not severely disabled like those autistic children that are unable to speak and really function at all in society.
Over the past several years, there has been a growing movement from some parents with autistic children as well as some researchers and doctors that take offense to Autism Speaks’ primary mission which is “dedicated to funding research into the causes, prevention, treatments and a cure for autism.” The “anti-Autism Speaks” crowd says that we should be focused on “autism acceptance” as opposed to “autism awareness.” These may seem like similar efforts, but it is basically the difference between seeking a cure for a debilitating disorder and simply accepting autism as some sort of “evolutionary” development.
I recently stumbled upon a blog post titled “Why I don’t support Autism Speaks (which is why I don’t ‘light it up blue’)”. In her blog she makes the point that Autism Speaks supports eugenics. That’s right… EUGENICS. Eugenics is commonly understood as the justification that the Nazis used in order to exterminate Jews in an effort to create a better ‘master’ race. So basically her premise is that because Autism Speaks seeks to research and treat disorders caused by autism, they are essentially trying to eliminate those “people” that actually have autism. She states, “They want to eliminate autism. I’m not going to support anyone who wishes my sons could have been prevented.” Apparently she has confused the goal to eradicate a disorder with the eradication of the “people” that are inflicted with the disorder.
Furthermore, she states, “Genetic therapies, genetic testing – I don’t in general have a problem with those, but trying to direct the course of human evolution – that leaves me queasy.” Essentially she is saying that autism could in some way be a furthering of the evolution of the human race.
Let’s delve into how ridiculous this is. Unfortunately, despite what my title suggests, my son does not have superpowers. He is not capable of growing razor-like claws out of his knuckles, he is not capable of shooting laser beams out of his eyes, and he is not even able to shape-shift into the likeness of others before returning to his original blue-colored skin. The X-Men all had these “evolutionary” advances, but to my chagrin, it appears that was in fact just the plot of a comic book series.
Autism is not an evolutionary development. Autism has existed for a long time. It is only recently within the past 30-40 years that we have learned more about it, but rest assured, this is not some ‘up-and-coming’ evolutionary development into some “super” new subset of human beings. That’s not to say that autism is not growing and becoming more prevalent… It is. And I am not one to claim that I understand why that is happening, which is the exact reason why we need organizations like Autism Speaks in order to raise money for research and treatment.
Unfortunately, much of the understanding that most Americans have about autism comes from the movie ‘Rain Man’. Rain Man was a man with Asperger’s that was capable of amazing mental feats and was able to use those abilities in math in order to win a ton of money by counting cards at the blackjack table in Las Vegas. WOW… I’d love to have a guy like that around!
Sadly, this is not an example of what autism looks like for the large majority of families that deal with autism and live with autism day in and day out.
Autism has become a catch-all term that is used to define an incredibly wide variety of neurological disorders. Do you know why that is? Because we still don’t fully understand it! There has not been enough study and research into understanding the causes and treatments for autism. I’ve met autistic kids that seem like any other child but may just have some social abnormalities. I’ve also met autistic children that are wheelchair bound and are incapable of eye-contact or speech. That’s an incredibly wide spectrum. Let’s not pretend that autism is some mild evolutionary quirk. The truth is, we need to learn more and study more in order to first understand it, and then figure out how to treat it.
My son will likely never live on his own. Adam will likely never drive a car. Adam will likely never develop beyond the educational level of a 3rd grade child. THIS is the reality of autism. Do I love Adam?… Do I ACCEPT him?… of course I do. However, would I love for him to be able to live a life that my other 5 children will be able to live? My goodness… YES!
I’ve cried for my son more times than I can count. I pray for him regularly. I don’t cry and pray because I don’t accept him or think of him as less than my other children… I cry because I love him and want his crippling disorder to be healed.
I understand that some people cope with autism by pretending that it is some sort of superpower. I get it. I don’t judge you. I’ve been there. However, let’s not pretend autism is anything other than what it is… a DEBILITATING NEUROLOGICAL DISORDER.
For me, I will continue to support Autism Speaks and all other autism organizations that support the research and treatment for autism. So I encourage you to ‘Light it Up Blue’ and give to autism research.
Very well said!
I really don’t know how I feel about Autism Speaks. I honestly don’t think I have paid so much attention because I am caught in my own whirlwind of taking care of my two. My daughter falls under Aspergers. My son is high functioning autism with other disabilities. Reading towards the end of your post I have thought the same way. I have prayed and I have cried. I also don’t think that my son will be capable of living on his own. Right now at 14 he really isn’t past a 3rd grade level. I don’t know if it’s regression or if he hit the learning plateau. I just want you to know it makes me feel good that I am not the only one who thought these things. I think I needed to hear that part today. I have been doing a lot of thinking about autism and decisions I have to make and such. Decision I mean programs for the kids and what I am going to do and what I am not going to do.
Cindy Magee says
Great post! My oldest has Asperger’s. There are amazing things he can memorize at such a young age and thankfully has come a long way socially. I understand what you are talking about though. I remember crying the first time he told me he made a friend. It was amazing!