Trigger warning: Extensive discussion of ableism and identity.
An accessible audio recording of this post:
"I do have [autism] but I don't like to be reminded that I do. It makes me feel abnormal."
"There was something affecting and influencing my mind that wasn't...me."
"It's like I have a disease and there's something wrong with me."
Each of those quotes come from Autistic teenagers whom I know. And in all three situations, I felt powerless and terribly on edge, triggered by the statements that had just been made. The first came in a private message from a young woman, and was disguised as an offhand remark. The second came during a conversation over instant messenger during a conversation about sensory issues, and was written by a young man. The third came from a young woman during a social skills group therapy session, and at the moment she said it, she was crying with her shoulder shaking.
Each situation triggered me badly, but in every instance, the most adequate word to describe my emotional reaction was devastated. I was -- am still -- devastated that young people grow up believing that difference is bad, that autism is something terrible, that there is something wrong with them for being different, for being disabled.
That's how pervasive ableism is in our societies. The most well-meaning of parents, teachers, and professionals unwittingly, and in most cases, unintentionally, perpetuate this mindset -- that something is wrong with you if you happen to be Autistic. If you're different or disabled at all.
If you follow the rationale behind the vast majority of therapies and interventions for Autistic people to its natural conclusion, the end goal of most of these therapies and interventions is to make the Autistic person appear and act as non-Autistic as possible. Applied behavioral analysis works feverishly to eliminate stimming behavior. But the vast majority of stims, such as hand flapping or rocking or pacing or fiddling with objects, do not harm anyone. Including the person engaging in the behavior. What's wrong with stimming? The only thing wrong with stimming is that the vast majority of non-Autistics don't do it, and view most stims as bizarre or frightening. That's all. It's an attitude.
What is the purpose of most social skills therapy? To make an Autistic person indistinguishable from his or her peers. And of course, some therapies from out of left field like chelation, which have the explicitly stated purpose of looking to recover or cure Autistic people. (The point being to make the Autistic person actually become non-Autistic.)
This does not mean that all therapies or services are bad. Certainly not. It's a gross misconception at best and an egregious slander at worst to assert that "Autistic self-advocates" somehow oppose all forms of therapy or services or accommodations. There are positive means of therapy. Plenty of non-Autistic people benefit from seeing a counselor. So can Autistic people. Some Autistic people benefit from medications, often for co-occurring conditions like depression, anxiety disorder, or bipolar disorder. Many Autistic people can benefit from the services of a part or full time aide, whether to assist with travel or seeking employment or with taking care of hygienic needs. Some Autistic people might need more services and supports in order to live happily, while others might need far fewer services and supports -- and some might be able to thrive with none.
It's when the goal of therapy is to eliminate autism -- or the appearance of traits associated with autism -- that there is a problem. This is a reflection of ableist ideas in our society. Even the language commonly used when discussing autism reflects this ableism.
Despite best efforts from both person-first language advocates and Autistic people who oppose person-first language, major newspapers still write that people suffer from autism, or suffer from Asperger's syndrome. Reputable news sources often refer to autism as devastating and frightening and mysterious. Autistic traits are frequently described as deficits. Parents asked about their children often say, "I knew something was wrong with my child." Some parents talk about their children -- young or adult -- in this way even when their children are in earshot or sometimes the same room.
We understand what you are saying. We hear very clearly that something is deeply wrong with us. With our brains. Or with the way we are.
That's more than troubling. It's beyond frightening. The year is now 2012. People have been talking left and right about the successes and advances the autism and Autistic communities have made in the last year. Plenty of folks look forward to expanding initiatives, launching projects, continuing good work. It's the New Year. The prevailing attitude of a new year is always one of hope and optimism. Away with the old; it's a clean slate; we have a chance, 365 days of chances, to do something good and right and worthwhile. And that's perfectly fine.
But unless we can begin to grasp the depth of the ableist backbone to societal attitudes toward disability in general and autism in particular, we will not make any progress to combat these attitudes. More young people will break down in tears, confessing their deep-seated fear of being looked at as abnormal. More young people will be marginalized and made to feel alone. The societal insistence that something is wrong with you will drive more Autistic people into depression and anxiety and learned helplessness, and in some cases, to suicide. This external attitude, all pervasive in our societies, will turn into an internal mantra -- something is wrong with me.
Autistic children need to be taught from an early age that they are okay. That nothing is wrong with them. That there are people like them. That some of those people have gone on to become happy and successful in pursuing their passions. Autistic children need to know that they are different, but that different doesn't mean bad. Autistic children need to know that being Autistic means being disabled, but that disability doesn't mean inability to live fully or happily. Autistic children need to be around other Autistic children, so they'll know there are kids like them. That they're not alone. Autistic children need to have Autistic adult role models in their lives, so they'll know that people like them can grow up and learn to cope with the challenges of being Autistic in a world dominated by non-Autistics.
One Autistic child at a time; that's how the paradigm of something is wrong can change. That's how institutionalized ableism can be fought. Little by little.
I have a dream that one day, no Autistic children or youth will be subjected to something is wrong with you. I have a dream that one day, no Autistic children or youth will be found crying, terrified that some "disease" makes them "abnormal" and less than human. I have a dream that one day, all Autistic children will be raised to have confidence in themselves as people. I have a dream that one day, all Autistic children will know from an early age that they are okay. That nothing is wrong with them.