Wednesday, June 15, 2011

Some thoughts about the Steve Silberman interview


















A couple of weeks ago my friend Steve Silberman posted an excellent interview of me which attracted some deserved criticism with respect to my responses. I would like to address some of the points of that interview here.


Silberman: Are there any ways that society could be reformed to make it a more comfortable and supportive place for autistic adults?

Robison: I don't think that's a realistic question, Steve. We represent one percent of the population. Asking what 99 percent of the world should do to make it a better place for that one-percent member --- that's verging on science fiction and fantasy. People who get into that way of thinking become militant about demanding their rights and thinking about what the world owes them. Frankly, I don't think the world perceives that they owe us one single thing.

If you're a guy with severe autistic disability and you can't talk, you cry out for compassion by your very existence. It's obvious when people look at you and listen to you. If you're a person in a wheelchair, nobody can reasonably argue that you should just get your ass across the street. But when you're a person like me and your disability is principally with social functioning, and at the same time you have good language skills, people are going to dismiss you as a jerk if you don't learn to fit in. That's the hard truth. To suggest that someone like me should ask for accommodations is, in my opinion, setting that person up for failure. Because when your language skills are good, there's no external sign of disability, and you act weird --- and then you make demands on people for how they ought to change to accept you? That's a non-starter.

*

People were troubled by my response in that passage, but I believe it remains essentially true, however unpleasant it may seem to people.  Remember, I am not saying I think this is how things should be.  I am saying this how I believe our society works, like it or not.

If you look and sound “normal,” indeed if you present yourself as intelligent and articulate (like many Asperger people) you are going to have a hard time asking people who don’t know you for special accommodation.

They are going to look at you and say, Why?  You look normal to me.

If, on the other had, you have some visible disability, people are cued that they need to be open to different expectations for how you might act or what you might need. 

I’m not suggesting people will take pity on us, or respond on that basis. I am simply suggesting that visible evidence of disability sets the stage for a wide variety of accommodations, freely given.  Taking pity on us has nothing to do with that, though other people may or may not feel that way.

When I suggested that some people perceive us as jerks when we say inappropriate things, I am not passing judgment on those people.  I am simply repeating what has been said to me by countless folks on the spectrum, and others who have interacted with them, successfully or not.  You may not feel comment that applies to you, and if so, that’s great.  Just remember that a defining characteristic of Asperger’s is a difficulty in reading the unspoken messages of other people, and that deficit naturally leads to misunderstandings, some of which will inevitably be interpreted wrong by the other parties.

Then we had this exchange . . .

Silberman: But other minority groups have demanded reasonable accommodation from society, such as laws against discrimination in the workplace. Black folks did it by launching the civil rights movement, many other disabled groups have done so, and gay people --- like your brother Augusten  --- have done it, too.

Robison: The race thing is completely different. You can look at someone and right away know if they're black or white. There's been a huge gay rights movement, but look at what there is already for gay accommodation. I don't think there was ever an issue of people refusing to hire gay people in most workplaces.

Silberman: Well, that isn't true. I'm not trying to argue with you ---

*

OK, I don’t know what I was thinking when I there was never an issue about hiring gay people.  I was totally wrong.  Certainly there are people who say, I won’t hire gay workers just as there were people who said I wouldn’t hire black people, or no Jews allowed here.

And indeed that sort of thinking surely still exists but it’s against the law.

One reason it’s against the law (among other reasons) is that black or gay or Jewish people are not inherently unable to do jobs simply because they are black or gay or Jewish.  That’s why it's called discrimination.

Asperger people are indeed often unable to do certain kinds of jobs because we are Aspergian and act differently in certain circumstances.  Therefore, when we are not hired for those jobs, it’s not clear to me that we are being discriminated against.  I think it’s much more likely that our differences cause us to fail the screening exam, and it would be our behavior that kept us from the job, not our statement that we have Asperger’s (if indeed we revealed that at all.)

To take another example, it is not discrimination to say we won’t hire you because you are too short if you have to be six feet tall to operate a certain kind of machine.  That’s not discrimination either; it’s a legitimate requirement of a particular job.

In my experience, Asperger people who have employment issues tend to get into trouble for saying the wrong thing, to the wrong person, at the wrong time.  That includes telling bosses or customers they are stupid, or pointing any number of deficiencies in the employer, other workers, clients, or whatever. 
We may also get fired for not following directions (because we think we have a better way) or for any number of reasons that ultimately tie back to our differences.

When we get fired, it is not because we have Asperger’s.  It’s because we acted inappropriately in a specific instance.  That is not discrimination.

That is what I was trying to say.  Racial, religious, or sex discrimination happens because one group of people does not like another.  I have not seen a lot of evidence of a big body of people who “don’t like autistic folks.”  What I have seen, is people on the spectrum who have lost jobs over behavior issues, and then called that dismissal discrimination.  Does that mean discrimination doesn’t happen?  Certainly not.  I’m sure it does, but I think the behavior issue is the bigger problem for most spectrumites in jobs.

I’m sorry I confused the issue by poor choice of words.

I’d also like to address the question of the Neurodiversity movement, and its goals of change and accommodation.

I am not opposed to ND or it’s desire for change.  My comments in the Silberman interview and elsewhere simply reflect my belief that the changes I see requested/demanded by the ND community will not happen, or will not work.  I know some disagree with this, and that’s ok by me.  The world will be a better place if some of the changes happen, but I am not holding my breath.

In giving the advice I have, I use my best judgments about how we can be successful the way American society is right not, not how we hope it might be in the future.

I’m 53 years old.  My perspective is surely different from those of you who are much younger.  I’ve had jobs, been fired from jobs, and started my own businesses.  I’ve seen them fail, and seen them succeed.  My advice is based on that experience and my observations of and interactions with people I see in the course of writing and speaking on Asperger’s and autism.


Overall, I think Steve did a great interview and I’m sorry my answers were deficient in some areas.

9 comments:

Stephen E said...

As a parent to twin autistic 6 yr old boys, i speak from a position of personal reference. You're position is that of realism. We, unfortunately, find ourselves in a world that does not understand or recognize the challenges that this population faces. But as you have stated, we can not wait for the world to change for a small minority of it's population. Education and awareness will certainly benefit us, as the world learns more about the differences and challenges the spectrum population face. But we, first and foremost, must meet the challenge head on, and realize that we cannot depend on the rest of the world to accomodate our individuality. we as parents, caregivers, individuals must prepare to adapt to the world as it is until the time comes that the rest of the world understands the benefits of what the autistic world has to offer us all.

Gavin Bollard said...

John, Thank you for the clarification. There seemed to be a lot of people misinterpreting your comments.

I get the feeling that with the gay issue that there has never been a case of discrimination of a gay person in a situation where they could not be identified as either being gay or being "less than macho".

How can you discriminate against something you're unaware of?

I completely get your point about suitability for purpose. If you were interviewing for a "meet and greet" sales role, you'd look at how a person greets you in the interview.

If the greeting is substandard, then you'd be less likely to employ them.

If you were later told that they had Aspergers syndrome, would you revise your opinion? I don't think so. You want the BEST person for the job. To do anything else is to discriminate.

The same situation applies in reverse when an aspie tests for a technical job. If you decide that he's the best person for the job based on the skills you see and then change your mind once you hear about the diagnosis - then that's discrimination.

Employing an aspie in the wrong job isn't "doing them a favour", it's taking them a step closer to poor self-esteem.

Thanks again for the clarifications.

Gavin.

austiespectrum said...

Just a small comment, the abuse and prejudice that physical and severely mental disabled people deserve is something worth of considerarion, they are seen as less then human and treated as such, many institutions hire caregivers without any qualification and there a dark history of abuse against severely disabled people outside and inside of the places that were build to "help" them. Ableism and mentalism are common. People do not want to know about how to help accomodated disabled, they want to ignore or hurt with less guilty than they would if it was a "normal person".
Also, some people with Asperger have a lot of more problem than just being weird, shy and geek, several aggravated symptoms make life extremely hard, as such applying to disability, it's more difficult, but mental and developmental disabilities are supposed to be considered too.
But I know you are being realistic here, I will hope that in the future that is seen as pessimism, hope is the last to die.

Thank you for the clarifications.

Sorry about any mistakes, I am not american and don't talk/write in english very well.

Corine said...

I too, have youth with Aspergers... perhaps it is this perspective I have with them that leads me to understand exactly what you are saying. I totally agree with you and think you did a great job of explaining yourself. Honestly, what the world needs is more tolerance and forgiveness. Most people simply do not know when they are talking to someone with Aspergers, or, even if they do... they still don't get it; they still may percieve them as jerks even though they are not. And so people with Aspergers can be very much misjudged and criticized for being rude etc. when they do not mean to be. I think refraining from judging and extending forgiveness are the best things society can do. That is a lot to ask. It is natural to judge and not realized one is judging. The best we can do as parents of AS children, is teach them to also forgive when others misjudge them, adn realize that others may respond rudly to them as a result of not understanding. We can not change the world, but we can be tolerant, kind, patient, and change our own responses to the things that the world dishes out... as challenging as it may be.
Well done, and thank you!
Corine :D

myshkin415 said...

Thanks for this post, John, and for the original interview, which a lot of people have found very inspiring. I knew there were a couple of rough spots in the interview, but I figured they would provoke meaningful discussion. This is part of that. Thanks again!

Steve Silberman

B said...

John, as the mother of a seven year old with Aspergers, I know exactly what you're talking about. We have already faced the response, "There doesn't seem to be anything wrong with him" numerous times. I feel as though most people simply do not believe the diagnosis precisely because he is very verbal. That is not going to change. I am just trying to educate his teachers so that they know what to watch out for and make sure he is made to feel accepted. It is very hard to hear your child tell you that the other children do not like him. Some people are more receptive than others and it helps me to know that there are those who take the time to educate themselves and make a difference in my child's life.

Emily said...

"One reason it’s against the law (among other reasons) is that black or gay or Jewish people are not inherently unable to do jobs simply because they are black or gay or Jewish. That’s why it's called discrimination.

Asperger people are indeed often unable to do certain kinds of jobs because we are Aspergian and act differently in certain circumstances."

Bravo. I think this is a really crucial point.

The one complication is that the social nature of the problems people with Asperger's have does make it hard to tell whether or not discrimination is involved. If someone violates a social norm, is the norm a reasonable one necessary to do the job, or is it one that, upon reflection, most NTs are not actually all that attached to, and isn't necessary to do the job? I do think that these sorts of norms are different, and one is discrimination while the other is not, but it can be hard to tell which category you're dealing with.

I guess the bottom line here is, you're right, it's unreasonable to expect 99% of people to drastically change their way of interacting in order to please 1%, without the other 1% doing anything at all to adapt to the 99%. And communication is always an interaction between people so everyone involved has some responsibility for the outcome, even if they have Aspergers. So it's encouraging to see you both helping NTs figure out how to interact better with people with Aspergers, and vice versa. The autism community badly needs more people like you! :)

newnoz said...

If the people of the world can't bend a little they will never know the benefits of including Aspergers in the working world. Hopefully the therapies of today will help the adult Aspies of tomorrow be more capable at being more socially acceptable. Still how did it serve the human race to keep me on disability or low paying jobs? Neither added to the economy in a positive way. Meanwhile i still want some sort of a job at 59. I am making one with my writing and painting as best i can. If it never goes to financial self support then so be it. Now i face agism as well as Aspergers.
My psychologist is having good results working with a employment agency who helps her clients get jobs. Some of this is due to the fact that some employers are willing to make some accommodations. In return they get a superior employee.
Still opening the minds of employer to the idea that we can work in many jobs that NTs do poorly in if they can deal with our social problems. It seems to me like a small thing to ask but somehow NTs have made it the Great Wall of China.
It wasn't that many years ago accommodations for people in wheel chairs was considered too much. When we grew up there was still Jim Crow laws. Yes we can make changes for people with invisible disabilities. I would hate to think of your son growing up in poverty because dad had never made the connections that allowed him to be a brilliant restorer of automobiles. How would that serve the world?
The question for Aspies is how can we crack the NTs stubborn refusal to look at the socially disabled as good candidates for minimally social jobs? I dislike shaking things up too but they are more capable of adjusting than we are.

missfying said...

Then please tell me what I should do. At the moment I can only fulfill 18 of my 32 contract hours, because employers don't even want me for free. Not because my work is no good, but because my presence is considered too much of a burden on the other employee's, because I talk to myself all the time. It's maybe realistic, but that still doesn't make it fair.

The main company's new office has an open floor plan, making it impossible for people like us to work there. Apparently that's okay, while it's not okay to have an office on the second floor with no elevator. (btw. it's a subsidized company that employs people with handicaps. When you can work at an office you are not considered handicapped enough to work inside the company and so they have to find you a work place 'outside' the company, leading to the problem I started this post with. The company's own office is now off-limits for us, for this reason)

Can you understand that there are times I wished I was blind or had a leg missing instead of this. Than people could at least see what was wrong with me, instead of assuming that I'm just being a jerk.