This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.
Should we change, or should others change for us? Should workplaces change for us?
We (by we, I mean anyone) must be able to present ourselves in such a way that the people we engage think we are nice/interesting/capable or whatever they need to continue the interaction. If we fail to do that, we will not move forward in a relationship with that person. That may mean we don’t make a friend, or we don’t get a job, or we don’t get admitted to a school. Whatever it is, it’s a lost opportunity.
Obviously no one can succeed with every engagement of another person, but each of us must look at our total tries, and our success rate. If the success rate is low, we have to ask ourselves why.
In my last post, I talked briefly about Asperger people who fail to get jobs for whatever reason, and then allege discrimination. Some neurodiversity voices ask for an end to that discrimination, and for greater acceptance.
I have asked for greater acceptance myself. I think that is a noble goal, but not one we will see attained anytime soon. When I look at how I was treated in childhood, how my 21-year old son grew up, and what I see today I see some change but not much. It leads me to wonder how much acceptance and accommodation we might reasonably expect.
I think what happens is that the philosophical desire for more broadminded treatment flies in the face of evolutionary human development. We have thousands of years of experience that tells us a person acting a certain way is a bad person; a threat. We are conditioned to reject people who exhibit those behaviors. What arethose behaviors, you ask? There is no single, simple answer. We just seem to be programmed to pick up certain unspoken cues and interpret them that way.
The problem folks like me have is that our Asperger’s causes us to exhibit innocent but non standard behaviors that get interpreted as bad. I’ve written on this before, urging people to think twice when a person says or does something unexpected. I think that works in some situations, especially with people who are exposed to kids with differences or AS in the family. For the great majority of people, though, the message does not get through or it gets ignored.
That’s why I say we are 1% of the population and we can’t expect the other 99% to change for us. Laudable as the goal of change may be, they just don’t care. Note than I am not saying the 99% are normal and we are abnormal. I understand the 99% have many issues of their own. I’m just observing that the odds are stacked very heavily against us, when it comes to getting them to change in all their collective diversity, indifference, ignorance, and whatever else.
What about discrimination? I won’t say there are not people who discriminate against autistic people. I’m sure there are. That said, when we fail to get a job or make a friend, I still maintain that failure usually stems from our behavior (unexpected or unacceptable), and not from arbitrary discrimination against the underlying cause (Asperger’s.)
I cannot control what other people think about “my kind.” Prejudice or discrimination is something I cannot change, and frankly, I would not want to do it for my benefit through force of law. Why? Because if someone does not want me around, that is enough. I am out of there. I am not going to stay where I am not wanted.
I want to be in control of my life. That means I work on changing my behavior as needed to fit in. I have full control of my actions, so I know success is achievable for me by that route. I don’t wait around for others to change, because that is frustrating and often unsuccessful.
What about accommodation for sensory issues? Several people asked my thoughts on that. Examples might be moving to a quieter work cubicle, or getting different lighting. I think many sensory accommodations are reasonable and doable for employers. I am absolutely in favor of any subtle changes in the workplace that make folks like us more comfortable.
At the same time, I recognize that kind of accommodation has its limits. If the accommodation would require major changes in the workplace, and that same workplace is acceptable to everyone else, I’d get a different job. But that’s just me. Through my life I have chosen to vote with my feet in situations like that. Others would fight for change and I can respect that, even though I would not do it myself.
In our society, we have chosen to let government dictate the tradeoffs by which some people are inconvenienced for the benefit of people with disabilities. An example of that would be handicap parking spaces. By having those spaces we allow those who need them to access facilities they could not otherwise visit. But the non-handicapped person who needs a space pays a price for that accommodation even as it sits unused and he has nowhere to park.
Disability rights advocates fight those battles on many fronts. I applaud their efforts and successes, but I do not wait for such accommodations to improve my own life. Since I want action now, I make my own way as best I can. That is the sometimes hard reality we all face, every day. We can hope and work for societal change, but we still have the chance to make the best of the life we have today, because today will never come again and I don’t want to spend it waiting. I want to be acting.