We are inundated with disturbing imagery depicting autism in the media. Perhaps one of the most famous was a video made by a well-known organization several years ago. It was a montage of a number of parents expressing their distress and the difficulties they face while raising an autistic child. Their children were almost always present as the parents spoke. The camera cut to those same children in full meltdown, stimming or sitting alone in a playground in stark contrast to their neurotypical peers who were running, shouting and laughing, while playing with one another. At one point a parent discussed how, for a brief moment she allowed herself the fantasy of driving off the George Washington Bridge with her autistic child in the backseat.
No one disputes raising a child can be challenging, and raising a nonverbal child all the more so, but that is not the entire story. As someone who once devoured anything on the subject of autism through the lens of ignorance and as a result was paralyzed with the fear these depictions induced, I am aware of the underlying emotional manipulation that is often 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 autistics and to all of our autistic children who will soon grow up to be autistic adults. 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 10 or 15 years from now, when they grow up to be autistic adults. Sadly, it is not just any one organization 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 available.
For those who do not have an autistic person in their life or have never met one, these depictions are what you base your perceptions and assumptions on. Just as when I was first told my daughter, Emma, was autistic, my mind latched onto the image of Dustin Hoffman rocking back and forth while muttering in his role as Raymond Babbitt in the movie "Rainman." Emma is as dissimilar to Raymond Babbitt as I am. 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 few.
Over the years I have read about and met countless autistic children, teens and adults. While some 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 eldest child, 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 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 state of calm, 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.
Emma's future remains a giant question mark, and so I fall easily into fearful thinking. The single most important thing to effect my thinking regarding my daughter has been communicating with autistic adults. There are a number of them I particularly like and admire, whom I reach out to and 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 like any 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 studying, working and living their lives.
As a result, the frightening portrayals the media seems so enamored with are softened, and 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, is funny and happy, smart and kind and loving, sensitive and unique, who will continue to progress and mature to become a young woman with all of those qualities and more. Being in contact with these kind autists has taught me more than any specialist, article, book or news show. These people with their writing and blogs have opened my mind to the very real possibilities that exist for my daughter. This gives me hope. I fall easily into fearful thinking, but I was capable of that long before Emma came into my life.
For a list of some blogs by autistic adults go to: Emma's Hope Book
For more by Ariane Zurcher, click here.
For more on autism, click here.
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In response to one poster: Awareness and knowledge gets funding and support, fear holds us back. Don't fear a child. Treat them as you would want someone to treat you if you were 'different'.
My relationship with my daughter changed when I stopped seeing her as "other" and began embracing her as she is in her entirety. She is verbal but has tremendous difficulty with language and is often hard for people to understand. If I hold onto my "idea" of a relationship being one of conversation, then I will always find her lacking, but if I let go of that, I open myself to her ways of communicating which are largely not through conversation. But there is such a beauty in our interactions as a result. She reaches out to me, often in incredibly creative ways, all the time, I just had to adjust my thinking so that I could receive them. It doesn't change the severity of her challenges, but I believe it perhaps softens them just a little.
On another note, I find your perspective especially interesting. I also have an autistic daughter, and a neurotypical son. In my case, my daughter is the older one, but I have found myself in your position, making many of the same assumptions.
I don't know how old your daughter is, (mine is nine). But I think it's good that you hold out so much hope. I find it getting nothing but harder as she gets older.
Emma is ten. Someone once said to me: Assume competence with no expectations. That kind of summed it up for me.
So I'd say you *aren't* on the spectrum, for the simple reason that you don't fit the criteria. (Unless you do fit the criteria, including that one, in which case I suppose you're just in denial.)
A lot of those autist bloggers who front as well-meaning while condemning realistic portrayals of autism, aren't really looking out for the majority of the spectrum. If someone on the spectrum isn't one of the high-aptitude high-functioners, they tend not to enter the minds of the predominantly successful autist bloggers. I don't really mean the benevolent and concerned bloggers out there. I'm referring to the ones who've basically been among the leadership for a while, who tend to be involved with the ASAN. They tend to be quite aggressive and really know what they're doing. Not that many autistics are going to grow up to be as successful as they are. Thinking the opposite won't make it occur.
I really appreciate this comment from you.
This is an interview with Dr. Luc Montagnier, who won the 2008 Nobel Prize for Medicine, talking about the latest treatment for autism which is proving to be astonishingly successful.
I hear you. I feel fear a great deal of the time too. My last piece for the Huffington Post dealt with fear exclusively. http://www.huffingtonpost.com/ariane-zurcher/handling-fear_b_1515466.html?ref=becoming-fearless But the idea that autistic children spend their entire day, every day in full melt down and engaged in self harming behaviors is untruthful and it doesn't help any of our fears, yet this is often the way autism is depicted, which is unfortunate.
My mom never stopped caring, and never stopped giving me the things that helped me grow (like my piano, or encouraging my obsession with animals and books) even though there were times she admitted I was tough to deal with. Kudos to my mom (and all the 'Autism Moms') out there than stood tough and supported their kids.
Think I'm exaggerating? I wish I were. Please check out the facts at the Autistic Self Advocacy Network, the largest actual autism advocacy organization run completely by autistics:
http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf