Monday, March 12, 2007

A Window of Opportunity

Recently I decided to start an organization for students with AS at the university I attend. I met with the director of the campus Disabilities Resources Center to find out if they knew of any students there with Asperger syndrome or autism. I was told that there were only two registered, and that both "deny that they have it". This is at a university with over 25,000 students.

Now, of course not every autistic student is going to register with the disabilities centers. Some don't need accommodations; others may suspect the "services" offered to be far from those things they really need. Some may be rightfully rejecting the disability model for autism. Others still are undiagnosed and unaware they may meet the criteria, if they have even heard of Asperger syndrome.

So I don't see the paucity of AS students knocking at DRC doors as a problem. The problem is that in concert with this absence is the co-occurring lack of an Autistic Pride group on so large a campus. And the more young adults I talk with, the more I am convinced that it's not the Autistic, but the Pride that's missing.


Both online and in "real" life I encounter far too regularly AS teens and young adults who are unhappy and ashamed of being "labeled" autistic. I have been asked by such individuals questions which include, "Have you ever been called a 'retard'?" The idea of Autistic Pride is foreign to many, and to some, incomprehensible.
Chalk it up to Aspie naivete, but this has come as a shock to me. My first contacts on the spectrum were, like myself, adults who had come to realize later in life that there was a name and a reason for what had always been thought of as their "weirdness" and/or "not fitting in".
The experiences I had heard and read about echoed my own, including a sense of relief followed by joy and new found purpose, and these had appeared to be nearly universal.
There are many factors which may contribute to the discrepancies in attitude. Youth itself is one, being difficult for AS and NT alike. Years of living bring perspective unavailable to teens. Those who would assume that having a "label" attached is the crux of the problem miss the point. The consequences of being different were real for me and for my contemporaries who grew up before the diagnosis of Asperger syndrome was available. We were also bullied, berated, told we could "do it if we just tried harder", excluded from peer groups, mocked, etc.
The diagnosis, or "label" is not the problem. Societal pressure to conform is the problem, and this pressure exhausts the resources of the best of us, whether we attempt to concede or rebel.
The energy needed to get through a day, asserting the right to autistic self expression, deflecting stigma, ignoring or responding to criticism, is difficult to come by. Without support and role models, the task is overwhelming. Enter a host of "inappropriate behaviors", followed by even more stigma, criticism and what is commonly known as "blaming the victim". (I hate using the language of victimization, but in the context of social coercion, it seems appropriate.)
As activists, we are responsible for carrying the message of neurodiversity into a society which still views autism as a problem. The cure movement with its plague rhetoric and fear mongering tactics has access to resources we don't have. They have the numbers, the money, the celebrity spokespersons, the media's attention. For change to occur in the attitudes which continue to oppress autistics, we will need to continue speaking out and being our autistic selves. But we will also need to raise our voices. Apparently, we are quite the sizable minority. Imagine the one in one hundred fifty voices united in insistence on societal change.
For this to occur, for the concept of neurodiversity to reach the "tipping point" where an idea becomes a part of the general consciousness, there must first be sufficient understanding of the idea within the autistic subculture.
I believe that we are at this time witness to a valuable window of opportunity. As the first large wave of children diagnosed in the nineties grows up, many of us who have come to the realization of AS later in life are still sufficiently young and energetic to mentor, encourage and support autistic youth in their efforts to navigate a society which has not yet evolved to embrace differences.
I envision the campus group not as a support group for talking about the woes and difficulties of being an autistic student, but as a forum dedicated to forward thinking, a place to discuss positive aspects of autism, to brainstorm ideas for public education and political action. Our needs are not so much for traditional "services", but for societal change of a type which expands rather than contracts possibilities for personal expression.

4 comments:

  1. How could two have been registered if they denied they had it? Did someone else register them on their behalf? If so, who? Though they probably were, what if they were not. Imagine someone registering you as bipolar or borderline or as a psychopath? I'm not sure I'd be very comfortable with someone registering me against my will. This is a very touchy issue.

    ReplyDelete
  2. It's funny, that about "fitting in". I have no problem "fitting in" with fellow Aspies. =P

    We should form our own company. And, while we're at it we should encourage those who are neurotypical to register themselves. Perhaps we can accommodate them with extra water coolers for gossip and idle chit-chat, a sports room and a place where they can satisfy their urges for boisterous social gymnastics. Those who register as neurotypicals would be assigned low-partitioned cubicles or desks that face each other so that they can more easily collaborate, communicate and satisfy the urge to be gregarious. We, in our Aspie organization would value the diversity of these neurotypicals for the bonds of teamwork they could form with each other, under our carefully supervised Aspie HR construct.

    ReplyDelete
  3. IMHO, the same type of reason exists as to why some Aspies may not wish to declare themselves as such just as some homosexuals may wish not to come out of the closet.

    I think it boils down to social acceptance. For example, in a workplace that is hostile to people who are different, those who are different will more likely be closeted for their own protection.

    When a boss refers to "reasonable accommodations" is a mocking way, be very careful as that immediately spells trouble!

    When HR acts as though "reasonable accommodations" are a burden, only a matter of legal compliance and something that negatively impacts the company's bottom line, brace yourself!

    It is for reasons such as these and more that I am _extremely_ selective with whom I share the essence of my way of being.

    Gladly, in a few workplaces and institutions of learning, things are inching in the right direction.

    ReplyDelete
  4. IMHO, the same type of reason exists as to why some Aspies may not wish to declare themselves as such just as some homosexuals may wish not to come out of the closet.

    I think it boils down to social acceptance. For example, in a workplace that is hostile to people who are different, those who are different will more likely be closeted for their own protection.

    When a boss refers to "reasonable accommodations" is a mocking way, be very careful as that immediately spells trouble!

    When HR acts as though "reasonable accommodations" are a burden, only a matter of legal compliance and something that negatively impacts the company's bottom line, brace yourself!

    It is for reasons such as these and more that I am _extremely_ selective with whom I share the essence of my way of being.

    Gladly, in a few workplaces and institutions of learning, things are inching in the right direction.

    ReplyDelete

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