As you probably know, April 1 kicked off this year’s Autism Awareness Month. Whether we need an awareness month for autism or any other disability is debatable–check the March 2014 archives for a discussion of this issue. But since we’ve got an awareness month for autism, let’s talk about it.
From all I’ve seen on the Internet and my own social media accounts, most people raising awareness of autism are not trying to make the disability look horrible. In fact, they’re mostly talking about the people they love who have autism, or the strides we’ve made in diagnosing and treating it, or signs and symptoms of it that you might need to know if you suspect a loved one has it. All that is completely fine. As with many disabilities though, part of the reason we’re asked to be made “aware” of them stems from the medical model. That is, too many people still look at autism as this horrible condition, this thing that must be fixed and/or taught or disciplined out of people with it. They believe autism and productive lives and futures are mutually exclusive.
My question is: why is that?
I would argue that autism, perhaps more than any other disability, has a reputation for being one of the worst things that can happen to an individual. When we compare disabilities using “disability hierarchy language,”* we might say something like, “Well, at least your child isn’t autistic.” We say things like, “But she doesn’t look autistic” or “But he’s smart and verbal,” because we’ve been conditioned to think autism precludes intelligence and verbal capabilities, and has a certain “look.” Just a quick reminder: very few disabilities have classical features, and for those that do, the features say nothing about the actual person. People with autism (hereafter known as PWAs) are treated as less than people, perhaps more than the rest of the population with disabilities. Even those with high-functioning autism struggle to find and keep a meaningful niche in our world. They struggle to find gainful employment, meaningful relationships, and all the other things the TAB population has available to them because they are human.
But again, why is that and what can we do about it? Let’s examine these questions one at a time.
What is So Horrible About Autism, Anyway?
In reality, nothing. Let’s take a look at what “autism” actually means. It’s defined as “a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.” Autism Speaks defines autism spectrum disorder (ASD) as a “group of complex disorders of brain development” that have “varying degrees” of difficulty with social interaction, verbal and nonverbal communication, and repetitive behaviors. I don’t see anything inherently horrible in that definition. Its terms are pretty medical, but then so are definitions of other disabilities. And one important part sticks out: varying degrees. Like every other disability, autism occurs in varying degrees and forms for various people. That’s not scary–that’s a fact of life for PWAs and their loved ones.
As with all other disabilities, autism only becomes horrible if your perception is negative. The way I see it, the problem is that autism, more than perhaps any other disability, makes people think of worst-case scenarios first. Unfortunately, plenty of worst-case scenario examples exist. Where do we find autism in the movies and on television? Right–Rain Man, or small scenes in other films that show things like a ten-year-old with autism, in a room behind a two-way mirror, having a tantrum while a psychologist pleads with her to calm down and sings “Itsy Bitsy Spider.” When real-life autism is portrayed, the focus is often the difficulty of the disorder, the stress the PWA places on the family, and his or her stereotypical, childlike behavior. For example, children with autism featured on shows like Dr. Phil may:
-Smear themselves and surrounding areas with feces
-Not communicate beyond the word “mean”
-Have to be restrained
-Have little to no education, at least none that is discussed
-Have no discussed socialization outside family
Their parents often:
-Cry profusely on camera
-In the case of one mother, admit that they hate their own child because she has autism
-Lament that, “Dr. Phil, she doesn’t act like a fourteen-year-old is supposed to act!”
-Otherwise express severe stress
Documentaries and talk shows may also show:
-Parents agonizing over the future of the child, often with negative prognoses about what he or she will never do
-Adults and experts discussing progress, but clarifying the progress is somehow “not enough”
-More discussion and focus on weaknesses, diagnoses, and failures than success
-Parents who have been encouraged to stop all therapies so their kids will “act autistic enough” on camera, as Autism Speaks has done
Of course, one might say that’s the media. Their bigwigs are paid to sensationalize everything. Surely books and scholarly articles are better, right? Well, that depends. Many real-life stories, such as the stories of Temple Grandin and Carly Fleischmann, do focus on success and positive traits much more than the media does. For that, I applaud them. Yet:
-Scholarly articles continue to focus on the negatives of autism–the prognosis of what a PWA will never do
-Real-life stories continue to have a tone that says: Life is so hard with my autistic child–but I love him. For example, several years ago, Parents ran an article like this about a then-fifteen-year-old boy named Ben with autism. His dad made clear that he loved Ben more than life itself. But the article’s focus was more about Ben needing diapers, having to “assume the position” to be checked for a dirty diaper in public (standing, leaning over with his hands on the car), and his dependence on a stuffed pink pig. The argument is that for some parents, that’s life with autism. And I completely and totally understand that. But the problem, again, is worst-case scenario thinking.
-Real-life stories about persons with high-functioning autism or Asperger’s continue to highlight the PWA’s “deficits.” For example, a mother might write with glowing praise about how smart her son “Greg” is–but in the same article, she may also lament that he will never live independently because he needs to be reminded to perform hygienic activities and is constantly passed over for jobs.
-Options for independent living for PWAs continue being presented in a grim light. For example, a recent article on the website Shut Up About Your Perfect Kid focused on the subject of how a mother will react when she has to place her son in a group home. Not if, when. The group home is not presented as abusive, but the focus is on how this person will be separated from his family, whether or not he actually likes the home.
Now again, understand that I am not trying to diminish the cold truth about life with autism, or life with a loved one who has it. It can be extremely tough, and many parents do live in a worst-case scenario world where the PWA may not mentally age beyond toddlerhood. What I am trying to do is underline the fact that the worst-case scenario is not reality for everybody. Nor does your individual worst-case scenario have to become reality. For example, if your child has high-functioning autism or Asperger’s, he or she doesn’t have to be the next under- or unemployed, isolated adult in his or her generation of persons with autism. But the scenarios won’t change unless we do something, so:
What Can We Do About It?
What can an individual or small group do to make autism seem less scary, to help others see it does not have to be horrible? Let’s look at some positive examples:
-Change your focus. As you probably figured out, what we focus on when we talk about autism is a major problem right now. Instead of focusing on the negatives, let’s bring to light the accomplishments and strengths of PWAs. Shut Up About Your Perfect Kid, the Asperger Women’s Association, and similar sites have plenty of these. They feature stories about kids and adults with autism who:
-Are Eagle Scouts
-Make straight A’s
-Create beautiful paintings
-Own their own businesses
-Have friends and real jobs that pay real money
-Are happily married
I challenge you to find THOSE stories first. Google things like “accomplishments of persons with autism” or “positive traits of Asperger’s.” You’ll find huge lists. Share these with people who fear the autism diagnosis, or people who already have it and wonder what the future holds.
-Educate yourself about autism. This means familiarizing yourself with common traits but also knowing that each case is different. It means reading up on autism research, but not running up to every parent of a child with autism that you see and saying, “I heard ___ causes autism.” In fact, get off the “X causes autism” bandwagon. I’d venture to say most of us don’t have the time or inclination to care about that. We care about living with autism and making the best lives possible for persons who have it.
-Utilize relevant and meaningful autism therapies. If you’re a parent or loved one of a child or teen with autism, make therapy fun. Center it on interests and cool new experiences. For example, try pet therapy or therapies like Surfers Healing, which gives kids with autism the unique opportunity to go to free surfers’ camps in California, Florida, North Carolina, New York, and even Mexico.
-When and where possible, get to know some real people with autism. Self-explanatory.
-If you’re a business owner or a human resources director, open yourself up to hiring people on the spectrum. Educate yourself and those around you to help make this possible. Think beyond the usual jobs, such as fast food work, although that line of work may be what some people choose, and that’s fine.
-Communities: Expand independent living options and opportunities. If you utilize group homes, make them welcoming, educational, and fun social places to be. Help families feel like they still have important roles in your residents’ lives–because they do.
-Push for expanded educational and social opportunities for people with autism. Draw focus away from the non-communicative, hand-flapping stereotypes as much as possible. Do not scold or shame a person with autism for narrow interests or repetitive behaviors, and do not take away interests and access to them as punishment.
-Encourage those with autism to find role models, whether or not the role models have autism themselves. I would encourage educators, librarians, professors, and other experts to seek out more famous persons with autism, however. Most people are only aware of Temple Grandin, and while she’s a super-cool lady, there are many more. In fact, let’s make the effort to find more famous people with all disabilities–and create them! More on that in a future post.
In closing, most of us have been exposed to some idea that autism is a horrible disorder to be feared. But it doesn’t have to be. As one of my favorite songs says, “Change your thoughts and you change the world.” Let’s start changing our thoughts about autism today.
* Disability hierarchy language = Language that consciously or unconsciously privileges one disability over another, such as, “Well, you’re deaf but at least you’re not mentally disabled.”