Monday, April 20, 2009

Autism in the workplace: hypocrisy from autism speaks

Since last Friday I see that the favorite organization of a lot of people, everyone from the neurodiversitites to the mercury militants to the biomed treatment advocates has once again engaged in superficial showmanship with their new program autism in the workplace. AS starts off stating how dire the problem of lack of even semi-gainful employment is for autists:

Unemployment and underemployment remain challenges for people with autism and other disabilities. A 2004 Louis Harris Poll found that only 38% of individuals with a disability were employed, as compared to 78% of those who did not have a disability. It is estimated that more than a quarter of adults with a disability live in poverty, and more than seventy-five percent earn less than $20,000 per year (Bowe, 2006).

Then we see some interesting videos of persons with autism in the workforce, trying to show autistic employees in a positive light. Of interest is that I am acquainted with one of the participants, Stephen Wise. Steve lives in Los Angeles and we would run into each other from time to time at AGUA (Adult Gathering United Autistic) meetings. This is an organization that I helped create along with Jerry Newport and I am one of the charter members. AGUA has now been in existence for 16 years. A movie, Mozart, and the Whale was made that was inspired by some events that happened at AGUA. The character, Gregory in the movie was inspired by your humble blogger.

It is my belief that these videos and this new crusade by AS is nothing but a horse and pony show. Steve's job was obtained for him through the Jay Nolan center not AS. I am pretty certain autism speaks had nothing to do with securing employment for any of the other people in these videos. If anyone can provide me with evidence to the contrary I stand corrected. This would seem like exploitation on the part of AS.

I should be somewhat surprised that the angry neurodiversitites who detest AS so much have not written about this on any of their blogs. But what is so typical of them is that they miss the forest for the trees. Somehow it gets under their skin that there is no person on the autism spectrum on the board of directors. They seem to go even further implying that one of their own should be appointed to that coveted position, someone completely hostile to the goals of prevention and cure that AS has. But what is really more important, one person who would have an unpaid position of influence helping to run the show behind autism or perhaps the organization actually doing something to help people find jobs or even employing them in their own organization for paid jobs? I believe that the latter is a far more important priority than the former.

Does AS itself have anything to say in the manner? We see here the following statement on the part of the autism in the workplace webpage:

Autism Speaks provides internships to adults with autism in its offices, and also outsources work to companies that employ people with autism. The organization is currently exploring the creation of employment opportunities, as well.

Well in the opinion of this blogger that does not cut it at all. Internships mean an unpaid position. At the very least they could employ someone with autism to be a file clerk in their office and give them extra help in doing the job so that they would not be fired. In fact, one of those persons could even be me. I do not believe that it is ethical for AS to have started this program until they finished actually exploring the creation of those employment opportunities for people on the spectrum but actually created them as well and then had the person(s) complete a 3 to 6 month probationary period on the job and then put a video about these people and not ready made autism workers for their own exploitive ends. At the risk of repeating myself, I believe that autism speaks should just be an organization that funds scientific research with the intent of curing and preventing autism. Engaging in lobbying, advocacy and awareness as well means that too many cooks spoil the broth. The organization tries to do too much at once does not get enough done and it won't hasten a cure and/or prevention for autism being found. Of course, something like this autism in the workplace campaign had it been done in a proper and ethical manner as I stated above would be an exception to that rule the way I see it.

I find it interesting that in spite of all of these activities autism speaks is basically a charitable organization. I believe that they should actively recruit persons with autism to work directly for their organization as paid employees, not interns, not contractors. Being that they are a charitable organization perhaps autism speaks should remember the old saying: "Charity begins at home"

16 comments:

Marius Filip said...

We ordered "Mozart and The Whale" upon the suggestion of our therapy supervisor.

I think it is the best fiction motion picture on autism to date.

SM69 said...

Hi, well, it’s me being on a harsh note here, I have not seen the Mozart and the whale film but I have seen clips of it on youtube, e.g.

http://www.youtube.com/watch?v=qlOMimp9KDY&feature=PlayList&p=0D129B1E8F701928&index=0

I was profoundly irritated by its cliché’s view of autism. Maybe that is what inspires some people to claim an ASD diagnosis? That might make them more special that they really are? Or it makes more sense in a way that is reinsuring? I presume, to know there is something not quite right and not knowing what it is, is distressing for the individual as much as it can be for parents?

I know there are people like the ones portrayed here, in term overall presentation, but, this feels so fake to me, and I hate what feels fake, maybe it is down to the actors, I think everything is not right, the script, the actors, the views, the ideas.

But I have not seen the film, I must try to find it, though I am not sure if I can watch it fully.

Regarding the Autism Speaks attempts to present a positive view on employment of ASD people: I work in a charity, I have been approached by ASD people to work as volunteers and I am considering to take one on board just now, but my recent experiences tells me it’s a lot to take on with little potnetial benefits (To give and not receive is a pattern I have been a lot in, and I must break that pattern). The looking after is a lot and we live a real competitive world and without additional support, or compensation, it’s not really on. So the government or some sort of additonal fundings are needed to support this kind placement, because. From a personal point of view as well as from a “business” point of view, being kind is not an option. Sorry to be so harsh, but that’s the reality.

What it takes is full additional/complementary support, for people to employ ASD or people with mood, personality issues (I think it is much more difficult than to employ people with physical disability alone). Who can give this support? In the EU, we would hope it would be down to governments, but this is not happening, charities, other charities, fully dedicated to this cause are needed. But where would they get the money from?

Until real help, I mean money, supports of some form are available, only ASD people who can produce, and not disrupt can be employed, even as volunteers.

Let’s not use dreams and false pretends, or Mozart and the Whale- things, and let’s be concrete and determined to really do something about the problem of unemployment in ASD. Employing people should not be a dream and it can only come with very concrete solutions. And right now I don't know what these solutions are, other than real, near 1:1 support, or mentoring to be adjusted as needed aiming to full independence over time with necessary visual/social support in place.

jonathan said...

SM69: though Mozart and the whale was based on a true story, it was complete fiction. None of the events happened quite like in the film and it was the director's take and sreenwriter's (ron bass) take on autism. Ron Bass also was one of two people who wrote the screenplay for rainman which was a stereotyped presentation of autism also.

I agree with many of your points about the situation of employment for autistic people. You seem to miss the fact that was in part the point of my post. Autism speaks is just putting on a horse and pony show trivializing the true employment problems of those of us with autism, yet has actually done nothing to help the problem.

SM69 said...

Hi, I did not miss the point and know we agree on this. When I said I was being hard I meant towards the broader group of ASD people, it was not against you. I don't post on your blog for the sake of being against but quite the opposite. SM69

R said...

Wow, I'm a bit flabbergasted by Lorene Amet's blanket statement against an entire group, a group made up of millions of people throughout the world. Does she want her son Lloyd to suffer from such a small sample of bad experiences which she uses to make such an outrageous claim? For instance, some autistic people have been found guilty of killing people. Although this is a very small number, and much less as a percentage than the general population, would she want someone to believe that all autistic people, including her pre-teen, seizure suffering son is also a possible killer because another autistic person killed someone? I can't imagine why a parent would classify an entire group of people, which her son is a part of, in such flimsy and a superficial and shallow assessment. There is some mental illness present in this type of belief.

R

SM69 said...

R

Let me tell you about the REAL world. People in this world are becoming increasingly unemployed, have you noticed? People with education, training, skills, motivation, no disability. People able to fit in a group; work under supervision with a pleasant agreeable attitude to others.

We've recently put an adv. for volunteers and received about 20 CVs in just a few days and interviewed 8 people. All good people, exactly as I described above. That was very competitive, they all had high degree of motivation. We took 5 and had to turn some good people down who were very upset about this. Now, did you understand this was for unpaid positions?

You are on the spectrum; you misunderstood my post, and decided to launch a personal attack, revealing personal information as if this information was important to your point, as if there was anything clever about you holding that knowledge of me. You posted as R, which means anonymous, not even having the balls required to indicate who you are in this attack. Obviously just in this short exchange, with nothing at stake other than your blinded and unknowledgeable pride, you need help to function constructively and with full understanding of the situation and lines of argument.

What I was saying is that to dream about having a place, a job, when so many talented and skilled people are willing to work as volunteers is not going to sort out your problem. This is the point of Jonathan’s post right? So, what do YOU think will sort out your problem? To attack me and reveal personal information on me? Nope. REAL support will be needed, with your attitude, if you get the chance to have a job, you’ll get fire very quickly. You need support to adjust your attitude to being constructive, instead of oppositional/arrogant and you need support to understand the FULL picture. Almost certainly you need support to work with others too. That what was my post about, is that any clearer? Now, unlike what you say, you don’t represent the ASD people, there are many out there who cannot even write, speak, communicate. Are you telling me they stand a chance to get a job? Dream on, it won’t happen and this has nothing to do with me but with the reality of this world. REAL support is needed.

Now, for any future posts from you guys, let me say, I will no longer reply to attacks, from Anons revealing personal information on myself and family. I will respond to arguments that have weight, opinions and some form of constructivism to them.

SM69


[I must discuss with SMC that view: people on the spectrum appear to have no balls, that should make him think. I am soon going to find out more systematically and personally if this is the case or not, hands down your pants, you guys get lined up. Hey that’s a joke, just thought I should clarify just in case you answer: Lorene Amet is talking about the ENTIRE ASD nation saying we have no balls}.

jonathan said...

hi lorene, sorry maybe i should not have let that one through, but i did not know your identity and son's name was a secret.

SM69 said...

Jonathan,

My name is not secrete, anyone can click on SM69 to know who I am, and see a few links that will show more information about where I work, the sort of thing I enjoy doing etc. There is no secrete in any of this and I have nothing to hide. But I think it is inappropriate to discuss my family or any private matters publicly unless I decide to do so, especially if this adds very little to the argument, is unrelated anyway or if this is solely to attack me in some ways. I discuss private issues with people I have private correspondence with, not on blogs.

I think the arguments we are trying to develop relates to fundamental rather than personal/individual issues and should be above gossips or childish-like form of communication.

I hope this will cover my points and I will not need to revisit this issue.

In the mean time, I await to hear from R, how he intends to address the REAL issues of unemployment of ASD people, not just for himself but for the group as a whole.

jonathan said...

Lorene: I warned you about this sort of thing when you posted the stuff about the affects that autishm has on family life. The same is true if you publically post things on blogs about autistics mostly being bad potential employees who can't work. You write stuff about this publically you will incur the wrath of angry neurodiversitites. This is inevitable and I have had to live with this as someone who constantly tries to refute their propaganda and inane messages. You have to be prepared for this sort of thing when you write publicly on blogs. Something for you to think about next time you want to stick up for these people as you seem to do sometimes.

Marius Filip said...

Sometimes people with disabilities have a competitive advantage over the others. I am not talking necessarily about autistics.

In Timisoara, Romania, is this factory producing socks. One of the jobs in the factory is making packs of 5 pairs of socks, all day long.

The managers preferred disabled people over other guys because they did not change the job on the first occasion and actually were better at this kind of job. There's a movie on YouTube about this, but it's not translated.

And I'm also am thinking of Stephen in one of the movies from Autism Speaks. I believe that, from one point of view, he does a better job than a neurotypical.

Of course, these are not solutions for disabled people or autistic people at large, but narrow niches where some people with disabilities may fit better.

SM69 said...

Thanks Marius for moving along the debate. If you note in the Stephen video, there is mention that he is employed with the job coach support services from community services and the position receives funding from the CA State Dept of rehabilitation and department of developmental services. It seems that Andrew also receives support from Maryland State Dept of rehabilitation services. So, these positions receive support and yes, people are employed in niches that use their skills.

I am delighted that this works for them and apparently for the company but we should not forget there is support in place to enable this. And we should not forget that these people are probably not really challenging, committed to their work, not fluctuating, with consistent attention and motivation, not oppositional. Also, they speak, and they have the skills required to get sufficiently organized to do their work and come to work. What is the percentage of people like these in the whole of the ASD group? Who knows? I don’t think anyone knows, but far less than 25% would be my guess. And even for people with similar characteristics, only a few will actually be employed. That huge company MasterPlan that appears to be recording huge sums of payments every day, likely has many employees, only one of whom was reported to have an ASD, likely far less than 1% of the actual population.

I have told this story before, but here at IKKEA, they are also employing people with disabilities. One of my friends wanted to purchase an item, and needed assistance. This friend is a father of an autistic child so he recognized that one of the staffs was on the spectrum so he asked him, where is the section with the pan? The man did not answer. Another staff, arrived, who turned out to have DS, and explained, the first staff could not answer because he was autistic but that he knew where the pans were (whilst the person with DS did not) and they all trotted along to the place, following the ASD staff. When they arrived at the pan section, the ASD and DS guys gave each others a high five. I think this is cool, but, clearly, if 2 people can do the job of 1, it’s either because they are on low wages or there is additional support in place. And it’s not just about additional financial support, it is also about finding ways to create that unique niche that will fit the person with ASD. That means knowledge of the condition, an open-mind and of course a desire to make things work. But no matter what, if the person becomes disruptive one way or another, or is unreliable, it will not work long term. This is true of anyone with that kind of problem, irrespectively of a disability or not.

Well, I can only hope that more and more people will address this issue across the globe, because this is a real problem and there is worse to come still.

jonathan said...

I rejected "R"s last comment because I believed that it was a personal attack that was unwarranted regardless of what issues Ms. Amet may have or not have in her life which is really no one's business but ms. Amet's. I guess if "R" who refuses to sign his/her real name has issues with ms. Amet's personal life he can address them elsewhere.

SM69 said...

Thanks for this J.

Following on the flow:

I am not a business orientated person, essentially because I don’t have any motivation to make money or think money. However, I can get excited by ideas even if this requires knowledge and skills I don’t have, as long as this is for a good cause. What I am going to say, almost certainly will sound very immature/simplistic to economists or business men, but wouldn’t be possible to create a more ethical banking system (like I believe it exists to address environmental issues), investing money in similar ways, though with a little more ethical choices, and redistributing profits to enterprises that support the employments of people with ASD (+ extra needed)? I would think it would appeal to the population to use these types of banks. The rest should be covered by government funding, that is for governments who have good ethics, like not spending on wars, and focusing on real values (Obama?).

I think these schemes for funding might already be available and perhaps people don’t know yet how to access to them (as this is the case here with support from the social work Dept, it’s available, but most people don’t know, or when they know about it, they still do not know how to tap into this).

Marius Filip said...

SM69: I took a look at "Wrong Planet" yesterday evening and I saw their claim that 55% of all autistics are Asperger's and another 25% are HFA, which puts the percentage of autistics that can find jobs and lead a not-so-impaired life to a staggering 75%. So, autism is piece of cake, isn't it?

I don't know numbers, but somehow I feel the percentage of autistics that can hold a job, have families and lead a quasi-normal life is much, much lower, including the Asperger's.

So, I believe the answer to unemployment of autistic people is to eradicate autism by finding a cure. Plain and simple.

Lots of folks say they don't want to be cured. I suspect that's because they KNOW there is no cure for autism right now. If it were, would they dare to say "no"? I have very serious doubts - hence the hypocrisy I think it is at the core of the ND movement.

Say Jim and Sam are friends, both autistic. Both say "no cure". But a cure arrives that is neither expensive, nor painful or time consuming.

Let's say that Sam take the cure "secretly" without telling Jim and in a short span he becomes non-autistic. Will Jim reject the cure in the face of the changes in Sam and the new opportunities he gets (job, social abilities, language, better behavior, etc etc etc)? I doubt it.

Until such a reliable cure is found, I guess the question you raise has not solution.

No government, no matter how rich, can afford to subsidize employment for all disabled people.

As a consequence, only a small fraction of disabled people will find jobs in those niches - with or without help from foundations, institutions, companies or the government.

Marius Filip said...

Somewhat off topic, but not too much.

It seems to me that Google is getting into the ND bandwagon.

jonathan said...

Marius: I agree with you 100% (maybe even 120% if that is possible). You might be interested in reading some of my writings on the Freudian defense mechanisms of denial and reaction formation which I believe many members of club ND use, which you can find on my blog and on my stories website in the journal there, though I can't provide the links off the top of my head.

You might also want to read a post by Joseph who writes in the natural variation blog who also projects a 70% employment rate for all autistic people at some point in time. I don't have the link handy to that one either, but I provided it on one of the posts a few posts back.

"R": I am not going to publish your comments which are deragatory to lorene amet on here. If you have a personal axe to grind with her I suggest you do it elsewhere. I am not going to have whatever your quarrel is with her aired on autism's gadfly.