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Accommodation

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.
  1. Jen K
    June 17, 2011 at 3:49 pm

    As a professional in the supported employment field, I can testify to the fact that cruelty, ignorance, and discrimination absolutely exist. I’ve had employers tell me they don’t want to hire someone with a disability because they think having an employee with a disability will make their non-disabled employees “feel bad” in some way – either nervous about relating with that person, or insulted that their job is “cheapened” because someone with a disability is just as capable as they are. In those cases, yes, I understand the need for people to vote with their feet; no job is worth the emotional and psychological hurts that are inflicted by knowing you’re not welcome where you spend up to 1/3 of your time every week. But I also believe we need to fight to change attitudes at the same time as we cast those votes. We need to show the cruel and the ignorant that they are wrong – both by showing that people with disabilities can and do adapt to workplace cultures, and by showing that workplace cultures can and are made better by making adaptations of their own instead of expecting every employee to be a cookie-cutter duplicate of the last one.

  2. David Hamilton
    June 17, 2011 at 8:21 pm

    Accomodations for people with Asperger’s or Autism would mean that we/they be accepted for who we/they are. not be expected to conform to a neuro-typical standard of behavior . Johns argument supports the favored notion that autistic kids can be taught to be ” normal” and so become part of the world dominated by neuro-typical people; that’s not accomodation . My reading of Autism Speaks agenda is just that .

  3. June 17, 2011 at 11:13 pm

    Little known fact: for some of us, having someone around with a disability allows us to see the kindness in some and the need for education in others, who are not handicapped – if we’re paying attention. Those of us who watch these disparate responses from a distance are also developing an idea of who we want as friends or who we can do without, according to the behavior we witness on the part of the “nypical” as John calls them. I want to be around the person with the good heart, whatever form they take, so intolerance is not an attractive quality to me. I can see it quickly with a person around (or it may be me!) who needs help.
    On the other hand, John’s right about one thing: everyone won’t be changeable, and the person who waits for others to change for them may have a long wait.

  4. yumi_irlen
    June 18, 2011 at 10:26 am

    For me, I just think that the neuro-typical are becoming more and more Aspergian each day – shutting themselves up in the virtual world of avatars, facebook, app phones… shutting themselves to their own world of music from their MP3, MP4, i-phones… shutting themselves to their own familiar touchstones and fixations be it planking, world of warcraft, ecstasy pills, dildos… They seem to also exhibit lack of empathy and the inability to cognitively and perceptually reason and assimilate other kinds of paradigms outside of their own parameters of self-indulgent thoughts… I’m not trying to put Aspergians in bad light… I have at least 5 High-Functioning Autistic friends… And I dare say I love spending time with them more than with neuro-typical people!… They may be blunt but always they are harmless… I never need to second-guess what’s going on with them or what’s going to happen… In short, neuro-typical people drive me nuts with their ambiguity!… I’ve worked for managers with Aspergian traits… One was a sheer delight to work for! Crisp and clear is the calibre of work expected. Everyone and everything ran tip-top, you know clearly what is acceptable what is not… The other was unbearably painful. Though high standards were expected at work but I attribute the unpleasant difficulties to the lack of early therapy which could have helped this manager to substitute caustic insensitively inappropriate words with more tolerable tone-moderated ones… For me, I see promising developments for Aspergians who are fortunate to have therapy impact their lives in a positive way. The neuro-typical languishing in the modern day ills of vanity, stress, pleasure-seeking and sensory-overload face a great challenge in terms of fighting off the tempations of idleness, apathy, nonchalance, ignorance… Aspergians if tweaked well and supported well CAN take the neuro-typicals to greater depths and greater heights and definitely greater clarity of what really matters in this life!

  5. June 18, 2011 at 1:19 pm

    John, great post! After spending most of my life blaming others for me not fitting in, I have accepted that we have to reach higher and farther to others. The truth is, we do represent a small percentage of humanity and it’s up to us to inform, educate and explain if we want/need understanding. I become frustrated as a provider when clients say, “well, if he misunderstood me, it’s his fault” instead of asking for feedback and constructive support in analyzing where things went wrong. Our perfectionism and distaste for being wrong keep us from growing. Maybe I am just too old, but I don’t want people misunderstanding and in turn, misjudging me any more. I have the confidence to say, “hey, something doesn’t feel right here. Can we start over? Where did things go wrong?” than for people to refer to me as “THAT woman”. Even better, when I am in a new situation I am likely to disclose up front and ASK for feedback. One committee I was on, I reported in the introductions to the entire room that I have autism and it causes me to be very direct and unfiltered at times. I then told them that anytime there is uneasiness, I sense it but am often unable to know the source. I further asked them, in light of these issues, could they be so kind as to offer me opportunities to clarify my intent if there is any discomfort between us. Most of the time when people have bad experiences, they haven’t had a chance to create such a script. Or, they are with really crappy people who don’t want to be considerate in which case, walk away!

  6. Darleen
    June 24, 2011 at 10:29 pm

    John,
    My son is only 7 and will probably never speak a word as due to his autistic severity. I can only pray that some day he may utter or be able to type 1 sentance.
    Please also note that it is not only you who has been discriminated against for years because you are “different”. As a parent I can attest to several instances where “normal” people have shunned my entire family or aleast limited their connection with us once they had any experience with my son. You are not the only person who was affected by your disease. Through no fault of yours or your parents you were born this way. However, as socieity sees it, your parents didn’t discipline you, they didn’t make you work…. blah blah. Years of those comments wear a parent down too. I love my son as much as I do my normal son and do as much as I can to help him. If you’ve never had a child in your life with ASD then people just “don’t get it”. That hurts the ASD individual and anybody who cares about them and for them.

  1. August 3, 2011 at 9:05 pm

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