We are inundated with disturbing imagery regarding autism in the media. Perhaps one of the most famous is a video Autism Speaks made. It is a video montage with a number of parents speaking of their distress and the difficulties they face while raising an autistic child. Their children are almost always present as the parents speak. The camera cuts to these same children in full meltdown, stimming or sitting alone in a playground in stark contrast to their neurotypical peers who are running around shouting and laughing, while playing with one another. At one point a parent discusses how, for a brief moment she allowed herself the fantasy of driving off the George Washington Bridge with her autistic child.
The video is disturbing on many, many levels. I’m sure it was successful in raising a great deal of money. However, as someone who once viewed images such as these through the lens of ignorance and as a result was paralyzed with the fear these images induced, I am aware of the underlying emotional manipulation that is so obviously being employed. It is propaganda, whether intentional or not, biased, deeply prejudiced and intended to create fear. And it is doing tremendous damage to Autists. These types of imagery perpetuate the marginalization and unfortunate stereotyping of people on the spectrum. In using the images of Autistic children it negates and ignores the effect these depictions have on those same children in ten or fifteen years from now, when they grow up to be autistic adults. Sadly it is not just Autism Speaks who is engaged in this kind of negativity and bias. News programs routinely air shows about “savants” who are seen as fascinating curiosities or programs about the tragedy and horrors of autism, citing statistics and the growing numbers, with shrinking resources etc. How did we get here? What happened to ethics in journalism? What happened to the idea that journalists have a moral responsibility?
For those who do not have an autistic person in their life or have never met one, these images are the only things you have to base your perceptions on. Just as when I was first told Emma was autistic, my mind grabbed onto the image of Dustin Hoffman rocking back and forth while muttering in his role as Raymond Babbitt in the movie Rainman. Raymond Babbitt and Emma are as dissimilar to each other as I am to Raymond Babbitt. But at the time of Emma’s diagnosis I knew of no other autistic person, so this was who I immediately thought of and then felt confused as to how my daughter could possibly be autistic. Many years later, when I met Temple Grandin at a lecture she gave, I again found myself looking for similarities. There were very few.
Over the years there have been countless news programs showing autistic children, teens and adults and while some of the people depicted share one or two behavioral similarities to Emma, I have yet to see any, where I think – Oh, that’s what Emma will certainly be like in 15 or 20 years. Comparing Emma to adults on the spectrum is something I have been doing for years without realizing it. This is not something I do with my son Nic. In fact it never occurs to me to compare him to adults. I know and trust that Nic will continue to mature and grow up to be the responsible, kind, thoughtful, intelligent human being that he is already showing himself to be. Why do I not do this with my daughter? Clearly this is where my work lies. It’s a double standard that I hold, one for my neurotypical son and another for my autistic daughter. Here is where using the word neuromajority really is appropriate and more accurate. Nic is in the neuromajority and therefore I understand and assume things about his future that I cannot know any more than I can predict my daughter’s. But because he is in the neuromajority I am able to lull myself into a calm state of thinking that I know, or feel that the chances are at least better than good that he will grow to be the person I can see him becoming now.
With Emma, her future, in my mind, remains a giant question mark and so I can fall easily into fearful thinking. The one thing, the single most important thing that is making an enormous difference in my thinking regarding my daughter, is communicating with Autistic adults. There are a number of them that I particularly like and admire, that I reach out to and who are kind enough to take the time out of their busy lives to communicate with me. I do not assume Emma will grow up to be just like any one of them, but in communicating with them I am given tremendous hope because unlike the media coverage of autism and autistic people, they do not live their lives from one dramatic sound bite to another. They are complicated, interesting, intelligent people working, studying and living their lives.
As a result the frightening portrayals the media seems so enamored with are softened, I am able to be logical in my thinking when confronted with those images and now even choose to avoid those programs. I do not need these depictions to compete with the very real autistic person in my life who struggles, yes, but who also progresses, who is funny and happy, smart and kind and loving, sensitive and unique, who will continue to grow and mature to become a young woman with all of those qualities and more. If there is one thing I can cite, which has changed how I think more than anything else, it is in being in contact with these kind strangers who are autistic. I’ve written about this before, and I will continue to write about this, because it is the thing that has changed everything that I believe and has opened my mind to the very real infinite possibilities that exist and has given me hope. I fall easily into fearful thinking, but I was capable of that long before my autistic daughter came into my life.
Emma's Hope Book 
Bravo! I hope this message gets out to a lot of people — very powerful — very important.
Thank you, honey. Will post to Huffington Post as well.
You are not alone into easily falling into fearful thinking. It not only sells newspapers and advertised products on TV, but it can even get people to vote for you. Hitler used exactly this tactic to scare the German populace into voting for him. Every day you read more about obituaries, suicides, killings, rape, murder, arson. The most watched TV series are all about crime. Where are the good stories?
That’s why I try to read Emma’s Hope Book every day, and others may have a hard time believing this, but it’s because your blog is a “good story” and the more autists you give links to, who speak for themselves, the more really GOOD stories I can read. And they’re not just stories, but the lives of real people, people who deserve and need a voice, and you are spreading that around.
I echo Richard’s comment: I hope this message (your message) gets out to a lot of people.
I’m glad you think it’s a GOOD story, we do too! It’s unfortunate that so many people and especially parents are confronted with these stories more than any other. Especially when it doesn’t need to be this way.
Yes I remeber that advertisement autism speaks made it was horrible. I would never want my children to see it. Given that everything is on the internet and seems to stay there forever I dread the day that they may come across it. Nor is it what families need to see when a member is newly diagnosed. I do remember seeing a great documentarty on TV with voice over by Ed Asner years ago- I can’t remember what it is called- but it showed all the positive things people with autsim can do without skipping over their challenges. We need more of that on TV. Autism is pretty much portrayed in the media the same way here in Australia as in the U.S as some kind of tragedy for families. It is very hard for us and honestly I get quite overwhelmed by the challenge of caring for my 2 kids, but that kind of scary coverage only makes it worse.
I agree. It’s not that all of us should be running around singing Kumbaya or pretending we are never scared, overwhelmed or any of the other myriad emotions that all of us sometimes feel, it’s that given we feel a great many things having this be the main thing that is shown when it comes to autism makes things even more challenging than they already are. And that’s just from our point of view, for people who are autistic it has really frightening implications, where these kinds of campaigns serve to further prejudice and abuse.
Awesome post Ariane! I went through my own fears as well, and had virtually no knowledge about autism when Daniel was a baby. The only association I had was autism was to be feared.
I am thankful for all of the adults on the spectrum especially women, who have spoken out and shared. It has helped me understand myself better, and understand my son. My other two children show autism traits/definite sensory issues and all of the resources now available give me peace of mind being able to find what their needs are and how to meet them. I am finding answers not scare tactics.
I have a whole other mess of emotions dealing with myself being a woman on the autism spectrum. Having others share their stories and information has made it easier to accept myself.
Thanks for your wonderful words!
Hi Angel, thanks so much. Really glad you’re finding the resources you need to help you help your children. Do you read E.? Her blog is http://thethirdglance.wordpress.com/. She’s wonderful.
I have been surfing online more than 2 hours today,
yet I never found any interesting article like yours.
It’s pretty worth enough for me. Personally, if all web owners and bloggers made good content as you did, the net will be much more useful than ever before.
Becoming informed is a good thing. Staying ignorant is not. The ignorant person hurts themselves and those around them. This is why I am choosing to read the links you sent to me. I am becoming informed and this is a good thing.
I am on your side of the fence on this one. I have not seen the video, but from your description it seems to be the wrong coverage to send out to the media watching public. The part I agree with the most is when you talk about the ignorant person watching this and then creating the wrong perception of autism. The video would most definitely create fear among those who are unfamiliar to autism. Not a good thing when we need all the advocates we can take.
Thanks again for another informative post. I will have to continue to read, research, and find out for myself what my opinions are of Autism Speaks.
It’s wonderful that you are willing to learn more. Not even a year ago I began to read blogs written by Autistic adults and this was what transformed my thinking and ultimately my world. Once I began reading everything changed. Interestingly my daughter has made greater strides and is happier because of my obvious change in thinking than in any single therapy we’ve done to date! Let me know if you’d like more links to hear alternate views.
I would love more links. Thank you!
Okay! Here you go!! 😉
This has nothing to do with Autism Speaks, but is a great post from an Autistic man I have become friends with and think is wonderful. His posts are always informative and enlightening. http://www.mmonjejr.com/2013/01/not-that-autistic.html
Other thoughts regarding Autism Speaks – (there are too many to list, so here are just a few)
http://www.examiner.com/article/why-autistic-people-don-t-like-autism-speaks
http://www.tuftsdaily.com/op-ed-autism-speaks-does-not-speak-for-autistic-people-1.2802262#.UP7XraV6420
http://www.sfweekly.com/2012-10-31/news/autism-autism-speaks-autism-self-advocacy-network-fragile-x-syndrome-genetics-medicine-biology-science-culture/