Here is the video that Autism Speaks had to pull because so many people and organizations wrote in complaining about it. While normally, I would not post something that I am personally opposed to, after reading many comments on various disability websites about this, I think that it’s best that people decide this matter for themselves.
Autism Speaks, however, is a large corporation that takes lots and lots of money from folks for research and for the purpose of producing videos like this for the sole purpose of influencing a mass audience; therefore, they really need to be very careful about producing something like this, with the implication that it speaks for the majority of families affected by autism.
I believe that the writers and producers of the video, two fathers who have children with autism, had the best of intentions in advocating for “autism awareness.” However, I really don’t think they stopped to think how offensive this might be to many and how angry it could make people.
On the other hand, as a writer, one always wants to evoke some sort of strong reaction, be it for or against… it lets the author know that their viewpoint has been heard and opens the floor up to discussing the subject. In this case, the subject is autism — one near and dear to me, as well as most of you reading this (after all, why would you be at a site called autistic genius if you weren’t yourself touched by autism, had a family member with it or a close friend?)
So here it is, watch first… then I’ll give you my two cents, for what it’s worth.
First of all, from a dramatic standpoint, that voice is scary on par with John Carpenter’s music from the original “Halloween”. While it’s effective, expecially for this time of year, the narrator really has no place speaking as if it is a demon possessing my son (or anyone’s son for that matter, or daughter). A voice like that needs an exorcism, and my kid, definitely not in need of one of those. Autism is not a disease folks, at least not in my eyes… it is a wiring of the brain that is not neurotypical and it manifests itself in many different forms and is different in anyone, hence it’s called the autism SPECTRUM.
Having autism can cause challenges and disabilities, there’s no doubt about that. But it isn’t a cancer needing to be cut out.
From an emotional standpoint, that video just makes me feel terrible. I have to wonder, was it the intention of the authors to make people with autism and their parents and relations feel miserable? If the intention was to educate others and frighten THEM into understanding there are people who need help, or to be aware of the challenges those with autism face (and their families face, though the emphasis in this video is obviously more on the impact to the family than the person with autism) — were they not aware that this would depress the hell out of the rest of us?
Sure the tempo picks up halfway and its mantra turns to one of “we can beat this thing, fight, fight, fight.” But hey, this ain’t a football game we’re talking about here. This is autism. This is who many people are. And for all the people on the spectrum who can’t talk, feed themselves, comprehend, communicate… there are just as many who are true genius’s, gifted innovators, scientists, artists, musicians, teachers, inventors — and of course, everything in between.
Now maybe it is easier for me to have this viewpoint, considering my son is on that high end of the spectrum; and yes, I expect he’ll go on to lead a wonderful life and profoundly affect society and those around him using the many skills and talents that all come out of his autistic brain.
Even so, I would never let him see this video. My son is 11, so I still have a say in this… but what happens when he’s old enough to watch these things without me screening them for him. Something like this can only make him feel bad about himself for no damned good reason. And for that, I am truly pissed off at this video.
Sure, in the road from diagnosis at 2 years old, when my son couldn’t speak or communicate — up to this point, where he is high functioning/aspie, has been a helluva long haul for him (and for us, his loving family and most fierce advocates)… but mainly, it’s my kid who had to do the work, not me. Yes, it was challenging, exhausting, depressing, anxiety creating, nuts at times how hard it was to get him the services, therapies and public acceptance that he needed, and continues to need. Yes, much of what the demonic video voice said really did happen to us, at one point or another, as I’m sure it happens to many families with children that are on the spectrum.
Yes, it costs a fortune to get what you need. No, you can’t really hold down a full time job and advocate for a small child at the same time. Yes it’s hard on a marriage and family dynamics. Yes, the divorce rate for parents of children with autism is exceedingly high (but then again, isn’t the divorce rate for parents with neurotypical kids high too). Yes, it does make shopping, going to temple, participating in a siblings extra curriculars, etc. challenging, frustrating, difficult. At least it did to us. Gee, thanks for the memories.
But scaring people, or depressing them and point out how hard it is for them, or how hard it will be for them is NOT the inspirational message that I think these two fathers set out to achieve in the first place. And you can’t devote half the video to the bad and counterpoint it with some rah, rah fight stuff. By that time, you have just depressed the hell out of your audience and whose brain is ready to even hear anything after all that stuff?
Also, I still find it disconcerting how much emphasis is put on parents to “fight this thing” rather than emphasizing the amazing struggles children and adults make every day to learn to circumvent and overcome their challenges, through all this neat therapy that their folks have gotten for them — not only in the interest of “being all that they can be,” but in trying to find ways to fit in with us neurotypicals, to find friendship, love and acceptance. Damned. Somebody stand up and give the runners a hand, will you, and stop giving all the credit to the coaches!
Not to mention, if more time and money were spent on educating people (children and adults) in a way to not frighten or shame them, but to get them to be more accepting of others’ differences; to be kinder to their fellow man, then the folks on the spectrum, be it high or low, would have a heck of a lot less to worry about and deal with.
How many kids with asperger’s and HF autism are bullied in schools today? WHY are they bullied exactly? Because they are different. Why not spend some time and money dealing with those kids and make change at a younger level, so people can grow into adults who embrace neurodiversity? (Autism Speaks, are you listening?)
A video like this does nothing for that. This video is not meant to do that. Which leads me to my most difficult problem with the video:
Who is this for?
Is this for us parents, to pat us on the back and make us feel like “Yeah, aren’t we doing a lot for our kids?”
Is this video for the public out there who knows and understands nothing about what the autistic spectrum is, both high and low? Who doesn’t know about the challenges that kids with autism face every day (because kids are the main actors with autism in this show, aren’t they?). And by lumping in the whole spectrum together, are we really confusing the general public more about the issues people and families face?
Are the filmmakers trying to shame people into helping, doing the right thing?
If that’s the case, I really can’t see this working. Yes, you’ll get sympathy. Maybe. But sympathy is not acceptance. And wouldn’t that be a far greater gift or goal, to achieve an understanding and acceptance of challenges and also to achieve a great appreciation for people who are on the spectrum, for thinking differently.
But then, I guess it all boils down to the filmmakers treat autism as a disease, and in my mind, it’s just a part of who my son is. I love him just the way he is. And I’m proud of him beyond measure for the things he’s done and will continue to do.
And I hope when he grows up, he uses his many gifts of his brilliant, autistic mind to create a cure for true diseases like cancer… or alzheimer’s… or to find ways to help those with brain damage… (though if he grows up happy and becomes a saxophone player, that would be cool too).
And all the while, I will hope that when he grows up, he never comes across a video like this. Though, somehow I think the odds of that aren’t on my side.