Thursday, June 16, 2011

Accomodation


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 are those 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.



9 comments:

thestoryofleah said...

What an inspiring post this is. Thank you for sharing it.

Kimberly said...

Thank you again for your insights. I can't tell you how helpful it is as a mom of a child with ASD. Once upon a time, I think a person could just simply be "good" at something, figure it out, and have an occupation in that industry. But, today, in order to get your foot in the door, especially in technology fields, you not only have to endure the education system, you have to navigate it pretty successfully. I am thankful that our experience with education and services has been so positive. Our IEP teams are dedicated to not simply getting our son through math and spelling (which he can do without trying), but are a training ground where he is given tools and "accommodation" in a relatively safe environment. Where he can practice adaptive behaviors. Where he is learning to coexist with nypical people while still maintaining who he is. Cognitively, he has the cards stacked in his favor, but socially, they are NOT. We are beyond thankful that we have a kid learning to operate with ASD in 2011, and NOT 1981 (or even 1991), where the prejudice against the behavior would cave caused our schools to dismiss a child rather than truly TEACH him.

Naked In the Garden said...

I really really want to know about this. I struggle a great deal with trying to find a balance between trying to get my son to "fit in" and just letting him be who he is. Part of me is simply tired of trying to get him to act like the other kids so that he doesn't "get teased" and I really don't think this is fair. Why should he care? Why should I care? Shouldn't I be pushing people to accept him as he is? Don't these constant reminders of how to behave make him feel even worse than he already does? He is a great kid as he is.

Fat Hamster said...

Naked, I think the important thing here is to make sure your son learns that he has a choice.

Your son needs to know that he can control how he behaves in social situations. He can choose to be his natural autistic self and take the consequences, or he can learn to adapt in one way or another and thus perhaps reap greater rewards.

He needs to know exactly what an increasing variety of useful alternative behaviours are and how it feels to perform and sustain them. And he needs lots of opportunities to practice them. That way he has an increasing chance of 'fitting in'.

But making sure he knows how to behave in a way that NTs at large will find acceptable is a world away from expecting him to behave like an NT all the time. That would be painfully difficult for him.

Naked In the Garden said...

Thanks, Hamster, that helps a lot.

Gavin Bollard said...

John, I think that the key word here is acceptance.

We all want to be accepted and we all have a right to acceptance which isn't always honored by society.

As you said earlier, there are usually no visible outward signs of aspergers/autism, so it's hard for people who aren't "in the know" to accept us for our autistic traits.

At the same time, employers should always try to employ the best person for a job.

I don't think that society should "lower their standards for us" or even "accept outrageous behaviour from us". If they did that, how would we learn? How could we improve?

What I do think is that we're individuals, separate from our diagnosis and we need to be accepted as individuals.

If we have a meltdown but apologize and explain, we need society to accept us and perhaps to help us to learn better control.

If we act different and are bullied, then we need society to protect us.

Instead of trying to get society to accept a condition which manifests very differently from one individual to another, we should be seeking acceptance of the individual. All individuals.

Celine said...

Reading this post and the comments above I feel as if I live in a parallel universe. I normally like this blog but this thread is simply ridiculous. At 33 years old I have spent 20+ years in school, followed by more than a dozen jobs in many fields (service sector, blue collar, white collar, governmental, non-profit, big company, small business...) and my overwhelming impression was that, *at every level*, 50-90% of time and energy was wasted in social interaction rituals. And that the final product was very rarely worth the time/money/energy invested.

The fact is that (non-severe) autistic individuals are more productive than neurotypicals in any non-social occupation. The problem is that most jobs are no longer primarily (if at all) about production but rather redistribution, consumption and establishing status. The average modern school/university/workplace is about bureaucracy and socialization first and second- with anything related to learning and producing a very distant third and fourth.

Why people have so much respect for a system that sucks in irreplaceable resources (both human and natural) and spits out garbage (CO2, toxic waste, endless ribbons of asphalt and concrete, the ugliest buildings in human history, a laughably awful culture hardly worth of the name, a record-breaking prison and homeless population, a parasitic public and private bureaucracy that outnumbers productive activity 5-1 and growing; public health problems that rival those of countries living on the edge of famine...)? And people moan they can't adapt? It's like a wife complaining she can't get used to her husband beating her: pathetic and disgusting. Either opt out, or be a cynic, or both. But don't ask me to believe that civilization will collapse for lack of barristas or community organizers or lawyers or plastic surgeons or salesmen or middle managers....or that being/interacting with such people is a vital skill that should be mastered, or that most modern work produces much of material or psychic value beyond an income.

christophersmom said...

John, I think that we do have to ask for a change in society because only with more awareness and tolerance the majority of people with Asperger's and autism can be better integrated into society. I only started to understand - and not fear - people with developmental disabilities after my own son turned out to be autistic. Nowadays if I'm approached by an autistic man or woman at the workplace or on the street I know exactly where they're coming from and I'm much more patient and understanding towards them. If more people learn about autism and become more compassionate, life of Aspergians and autistics in general will be so much easier in the workplace and at school.

Richard Bard said...

Autism - It’s time for the 99% majority to speak up for the 1%

(continued from previous comment)

At the beginning of this post I mentioned that I don’t have a spectral disorder. That could change. Not just for me, but for you too. Have you ever heard of Sudden Savant Syndrome? It’s pretty mind-boggling, pun intended. Let me tell you about it.

There are a growing number of documented cases where ‘ordinary’ people—those of us in the 99% group—suffer trauma to the head during an accident or seizure and then develop incredible mental abilities overnight. Suddenly you possess an eidetic or photographic memory, or the ability to do complex mental calculations in a matter of seconds, or maybe you’re able to compose a symphony in your mind and then play it beautifully on a piano in a matter of hours. Yes, this can actually happen. Pretty incredible, huh? But—and this is a big BUT—in most cases you’re also likely to suffer debilitating side effects and before you know it, you’ve joined the ranks of the 1%. If that happens to me, I’m going to wish I’d done more...before.

I’m a thriller writer. My debut book, Brainrush, is about a former combat pilot that becomes part of the 1% as a result of a freak accident. In his case, he doesn’t experience any negative side effects. At least not at first... Publisher’s Weekly called the book “a terrifically entertaining thriller”, so that’s pretty cool.

It was in researching Brainrush that I came across the startling statistics about the epidemic that is autism. It prompted me to include two autistic children in the story. As I breathed life into them on the page, I grew to love them, to feel for them and to truly care about the 1.5 million people in the U.S. affected by the disorder. Interestingly, my notes taken three years ago from the Autism Society of America website indicated that autism and other spectral disorders occurred in 1 out 150 births. I checked the website today to discover it has increased to 1 out of 110 births. That’s a 27% increase! Something must be done.

This is my first blog ever. It will probably be a while before I write another. When I do, I promise it will be shorter. In the meantime, I offer my thanks to John Elder Robison for his original post. As an Aspergian, he’s lived a lifetime being part of the 1%, experiencing the discrimination, the odd looks, the uncomfortable judgments cast by the rest of us. I haven’t read either of John’s books, but I will now.

Maybe we all should.

Richard
www.RichardBard.com/blog

About the author: In 1975, young Air Force pilot Richard Bard was diagnosed with cancer and learned that he had only a few months to live. Thirty-six years later he’s still going strong. He earned a management degree from the University of Notre Dame and after leaving the Air Force he ran three successful companies involving advanced security products and hi-tech displays used by US embassies and government facilities worldwide. He currently resides with his wonderful wife in Redondo Beach, California. Brainrush is Book One of a series. For information visit www.RichardBard.com.