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.
To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here‘
And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.