Sunday, August 14, 2011

interesting piece from Gernsbacher and friends

I see there is an interesting new article from Morton Gernsbacher and two of her friends. This article deals with a rather unoriginal and cliched topic, the lack of visibility of autistic adults. This is nothing new in fact I wrote a piece dealing with this issue about eight years ago, in which I bemoaned the fact that the existence of autistic adults is largely ignored. In addition to Gernsbacher, one of the authors is Bev Harp, a well-known neurodiversity ideologue and at least one time part of that unsavory clique of neurodiversity bloggers called "the autism hub". The third author is one Jennifer L. Stevensonwho apparently until recently was a graduate student at the university of Wisconsin who studied under Gernsbacher.

Though Gernsbacher(and by extension one of her grad students)is not one of my favorite people, she and the other two authors do bring up some valid points about how autistic adults and some of the problems we have is largely ignored and how the problems of childhood are portrayed by the media. They neglect to bring up the fact that perhaps one reason adults are ignored is that no one wants to acknowledge the poor prognosis that most of us will have. This is especially true for neurodiversity proponents such as Gernsbacher and company.

They trivialize what is a very bad disability by claiming that terms such as "suffering from" is belittling language. Yes, I suffer from autism, it is not belittling I really do have this disability and suffer from it every day. Only one of the three authors (Ms. Harp) alleges to have autism and she apparently is someone extremely high functioning who was able to enroll in a social work graduate program, so certainly the fact that many of us do suffer tremendously from this brain disease is certainly an abstraction to these individuals.

They write:

Autistic children are further mythologized to lack awareness of their situations and surroundings; indeed, the very idea that they might be embarrassed or offended by being used as pawns in pity-driven fundraising campaigns is often dismissed by the very parents who consider themselves autism "advocates." Children, therefore, present the face of choice for virtually all autism support societies and most autism charities.

I am indeed impressed by the omniscience of Gernsbacher, Stevenson and Harp in knowing that autistic children (every one of them) is embarrassed by the use of their images in "pity-driven" fundraising. No, it is not possible that these people are trying to get help for their severely sick and crippled kids. It does not matter that the neurodiversity movement used the murder of Katie McCarron and the dumb remarks made by Allison Singer about driving off a bridge with her kid as pawns in their crusade to express their hatred and lies and propaganda, claiming that those of us who wish a cure for ourselves or our offspring are somehow responsible for murder.

They go on to cite Brugha's flawed study for proof that there are equal numbers of autistic adults to autistic children. I believe it is possible that autistic adults exist in the same numbers of persons born in more recent birth years, but admittedly definitive proof is lacking and may not be feasible to acquire. One must remember the old cliche about looking for a needle in a haystack.

They go on to cite the dismal prospects of most autistic adults (both future and present), certainly ironic in light of decrying the use of pity in fundraising.

Most concerning of all to this blogger, is their comments about autism in the workplace. They talk of "Jack", an autistic man whom they state is an efficient computer technician. In spite of Jack's skill in a rather marketable profession, he "loses out" on various jobs due to inappropriate attire, inability to look people in the eye and reticence in interviews.

They write the concerning statement:

Employers lack the knowledge and resources to support an employee like Jack. They have, after all, like the rest of contemporary society, been inundated with rhetoric asserting that autistic children must either be cured or suffer a lifetime as unemployable burdens. Rarely has the alternative—a capable autistic adult needing appropriate workplace supports—been presented. Scarce resources will not be directed toward such an unidentified need.

As someone who spent many years struggling in the workplace and suffering from these problems first-hand, I believe I have some knowledge about this and I wonder how capable Jack truly is and assuming so, if there are any supports that will be helpful to him or make a difference in his employability. I am certain this is not the case for myself. That part of my problem was an inability to do a job as competently as a nonhandicapped person due to my own disability. I am certainly skeptical that Gernsbacher and colleagues really have valid answers.

I seem to remember Bev Harp had some sort of job, prior to studying social work, but what of Gernsbacher and Stevenson? Do they have the knowledge to support someone like Jack? Gernsbacher's professions have been high school teacher and then college professor. She has lived in a lifetime in an ivory tower with essentially no practical business experience. From looking at Stevenson's website, she is an extremely young (probably no older than 30) graduate student who as recently as 2002 was a college undergraduate. As far as I can tell she has no real work or world experience outside of academic psychology. They claim that no cure is needed for Jack and if employers would somehow accommodate his disability he would be fine. Based on my own experiences in the workplace I am certainly skeptical of this. I don't believe inappropriate attire would make a difference for a computer tech. If he were highly skilled reticence in interviews would make no difference. In the days when I was applying for work as a medical transcriptionist, I was rarely asked extensive interview questions, but prospective employers were interested in assessing my skill for the job. While it is true, that some employers might have prejudices against Jack due to some quirks, if he were truly a competent computer tech, he would be able to work someplace. I did keep a number of transcription jobs for fair amounts of time. Though I suffered some discrimination in the workplace, competence was certainly an issue in my case.

They also speak of an autistic woman named "Jill" who loses jobs due to making "animal noises" in meetings with clients. They go on to claim that the employer should completely overlook Jill's behavior, no matter how disruptive it is. Of course, we have heard this before from Ari Ne'eman, who at 21 years of age and never having had paid employment in his life stated that social pleasantry should be eliminated as a criteria for evaluating people for hiring or ability to do a good job. It is quite clear that these three authors (certainly Gernsbacher and Stevenson) are equally naive about the minutiae in the workplace as Ne'eman.

While I am somewhat gratified these three have brought attention to the lack of visibility of autistic adults, I don't believe it is helpful for them to claim people who want to help themselves or their children are invoking in pity as if it were a bad thing. I think it is even less helpful for them to propose simplistic quick fixes in the workplace for adults with autism, when they themselves have so little experience in the real working world.


Anonymous said...

"They also speak of an autistic woman named "Jill" who loses jobs due to making "animal noises" in meetings with clients. They go on to claim that the employer should completely overlook Jill's behavior, no matter how disruptive it is."

LOL!!! I wonder what kind of animal noises she makes.

lurker said...

I don't believe the examples they cite are realistic. I'm convinced they're trying to get others to feel sorry for the higher functioning with really high aptitudes, making them out to be the victims and underdogs, instead of the ones on the spectrum who actually have many impairments. The really high-functioning aren't suffering anywhere near as much as the significantly disabled on the spectrum. And I know from the way discussions were years ago, that many aspies have been described as gainfully employed in stereotypical careers. These trumped up stories of poindexters being oh so disrespected by employers discriminating against eccentricities, are relatively new. They don't need "supports" and "scarce resources". They act like they're repulsed by even acknowledging ones on the spectrum lacking life skills, in which case they would have much less argument against cure.

They're trying to channel all that anger and disgust derived from basically having to be the subject of charities which naturally entail pity and dependence, and direct it against elements of a system which haven't yet come up with a way to end the problem. And the hatred and disgust, which is really justified as there is a lot to be mad about, isn't being directed at those who are making out like bandits from the situation, which include the functionally/intellectually very well-off who don't want a fundamental transformation that abolishes the problem and obviates charity/pity.

Nobody suffering from the impairment involved loves listening to all of the fundraising rhetoric that the anti-cure keep complaining about. But the impairments themselves are a lot worse than that and won't ever go away unless cure based fundraising succeeds. And the anti-cure agenda isn't pure from pity-based rhetoric, and they are the ones who also like to often avoid acknowledging adulthood for those on the spectrum when it comes along with continued impairment.

The Fauxtist said...

Gernsbacher isn't relevant Jonathan. She has never been and will continue not to be. I'm not sure why you waste your time on these fringe characters.

It's nice to let out a little steam, especially when you consider how mediocre and uninformed these people can be, especially folks like Gernsbacher and Ne'eman. However, these are fringe characters that have little to no impact on autism at large. They only have impact in our little walled in "garden". In Gernsbacher's case, she is trying to rationalize her child's life prospects and in Ne'eman's case, he was born on third base and thinks he hit a triple.

Neurodiversity is dead. Not even their own chat boards have much activity anymore (I know because I'm still a stealth member). ND died when Baggs was found to be a fraud. She was the real catalyst for this "movement". Now all that is left is some dead enders like Ne'eman and his cult and the Autism Hub and its band of misfits. Ne'eman's cult will disappear when he gets a real job and discovers it ain't so cool anymore to be "autistic".

Biomed is even dying from its own lies and false and phony hope/hype. All that is left there is dead enders too. People with too much hope and not enough money. Parents with munchausen by proxy syndrome. The Age of Autism might as well be a support group for people with MPS, because that's largely what they are. They go from one protocol to the other. The more rational of them will quit whatever protocol they put their child on once they see the devastation it causes but they'll be quick to try the newest fad "cure". ND can't stop that anymore than the MSP group can stop the madness of the ND group.

The whole thing, this thing we call the "autism wars" is and has been a complete waste of time. Its been our time and its been the center of our time. We weren't the first. Noah Greenfield started it in the 70's. How many of that generation do you find in these debates? Practically none. They had their time of fury and debate, false cures, false hope for a better life. They have now realized that its all a lot of bark and no bite. The cycle just repeated with us.

There will be new suckers, new people to ND, but in lesser numbers. New therapies, new arguments and new realizations that it was all for naught.

Its all a giant fucking waste of time. The only thing that matters is what you did to change your local conditions. It is all local. Its always been local. But local isn't "sexy" so each generation only realizes this once its too fucking late and they have no energy because they spent it wasting time on the "wars". The autistic will continue to suffer.

jonathan said...

@ fauxtist Gernsbacher is considered a respectful scientist by many in spite of her fringe views. I put more than $40,000 into social security which I've been trying to get back in the form of disability for more than four years with no end in sight and a poor prognosis of ever seeing a dime of that money and whatever i get i'll have to give 25% of it to my attorney. She receives funding from the government that includes these dollars I need to have now, including other taxes that I paid at the time when I was working. The money that is wasted on her could go to a sane scientist who will actually try to find a treatment and maybe even a cure so that someday these kids can have a decent life and no kids born in the future will have these defects in their brains that cause so much pain.

Therefore, I feel it is my duty as a person on the spectrum with this piddling little blog to do whatever I can to call this woman out as long as she receives federal tax dollars from the CDC and NIMH to finance her research.

Also, the fact that someone along with a youthful and naiive graduate student would give simplistic solutions to hard problems such as a person on the spectrum's inability to keep a job is also worth bringing attention.

Even if Ne'eman has very little impact on autism he currently has more than I do which is zilch. Obama and the congress certainly aren't going to listen to me or take my recommendations, such as putting all the money that is spent on special ed attornies, ABA, etc. into a tax deferred special needs trust that would be cashed out on the person's twenty-second birthday.

And yes, you are correct, part of it is a new to vent due to my frustration of having this disability and the annoyance that individuals such as Gernsbacher (as well as Stevenson and Bev Harp) and Ne'eman cause. Perhaps it is not psychologically healthy or serves a constructivce purpose but that is another reason to write about them in a blog post.

SM69 said...

Biomed is dead? Absolutely not! In fact it is getting stronger and stronger- because the biomedical abnormalities in children are becoming more and more well defined at a lab level and hence more effectively addressed. Jim Adams has published a series of studies that I view as excellent foundation for more research work into intervention. It is not because parents in this economic climate have to find their own solution to put in place these interventions, that this branch of autism does not work. The movement has achieved a lot more than ND of course, kids do get better, and many young children come fully out of it- only vanity precludes to see this.

As for the age of autism comment, very sad to judge parents in such ways- no they do not have MPS- they are desperate and angry- most of them have experienced regression after vaccination and this has not been dwelt with by the authorities adequately. I am certain that the link vaccine autism will become established in the open one day- there is more and more ground supporting this, despite the propaganda that goes to repress this information.

I think to have your attitude of denial is what waste of time is (being a ND supporter was of course already all about denial- now the denial continues to reign, there is nothing to do other than local actions...), but I do agree local actions are essential- why saying this is not sexy though?

Action in autism is not about personal aggrandisement and YT videoing, it is about real actions, our families, our people and helping in establishing better interventions and showing they work, it is not about being deep conservative and do nothing about this affliction. It's about imaginative and supportive support to learning, it's about learning constantly and questioning, but not with a close mind.

Anonymous said...

"These trumped up stories of poindexters being oh so disrespected by employers discriminating against eccentricities, are relatively new. They don't need "supports" and "scarce resources". They act like they're repulsed by even acknowledging ones on the spectrum lacking life skills, in which case they would have much less argument against cure."

You hit it right on the money, Lurker. Anyone from Neurodiversity
who gets easily offended over real issues autistics face is obviously in denial that autism is a serious disability that needs to be cured. They don't even realize the intentions they're expressing to people come across as being in denial about autism needing to be cured.

Anonymous said...

"...They also speak of an autistic woman named "Jill" who loses jobs due to making "animal noises" in meetings with clients. They go on to claim that the employer should completely overlook Jill's behavior, no matter how disruptive it is..."

Did they also go on to claim that the *clients* should completely overlook Jill's behavior...?