Tag Archive | "neurodiversity"

New MIT lab wants to cure autism


In the occasionally some news is good news department, Gadfly is happy to report that there’s a new kid on the block, a new lab at MIT started with a private donation, that has expressed a desire to find a cure and prevention for autism.

Hock Tan and Lisa Yang, parents of two autistic children and MIT alumni, have donated 20 million dollars for this laboratory.

In another article they state they want to erase the devastating effects of autism and want a world free of the burdens of autism.  Read the full story

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Open letter to Donald Trump on Neurodiversity


NOTE FROM WALLACE: Republished with the permission of the author.

January 20, 2017

Dear Mr. President:

I’m a sixty-one-year-old man with an autism spectrum disorder.  This disability has made my life very difficult.  It has prevented me from ever having a girlfriend, I’ve had very few friends and it has greatly impaired my ability to make a living.  I worked sporadically between 1979 and 2006 but was fired from more than twenty jobs.  Because of this, I retired at the age of fifty-one.  I was denied social security disability insurance and am supported by my elderly parents who might not be around much longer.

I had to go to special education schools for eight years and was expelled from a mainstream school.  I barely graduated high school and then barely graduated college.  I have to do a self-stimulatory behavior during the day which impairs me from being able to do the writing I want to do and it makes it hard for me to get anything done.  I have horrible fine motor coordination and have nearly illegible handwriting.  I have a very loud voice, repeat a lot of the same things over and over again and people find my behavior offensive.  Compared to most others on the autism spectrum, I have it good.  In addition to supportive parents, my affliction is mild.  There are others who can’t speak, injure themselves by banging their heads into walls, are incontinent, and need life-long care.  I long for research to be done into how people with my disability can be helped.  Ultimately, I’d like a cure for autism, though I realize that’s unlikely to happen in my lifetime.

The reason I write you this letter is because the executive branch of the government, namely the secretary of health and human services who will serve under you, appoints members to the Interagency Autism Coordinating Committee which advises the government on autism funding and policies.  Some of the past and present appointees belong to an insidious movement called Neurodiversity.   These people do not believe that autism is a disorder, and, in some cases, do not believe that it is a disability.  They make the untrue claim that acceptance and the correct accommodations will resolve the difficulties people on the autism spectrum have.  A number of these individuals have been appointed to posts in the federal government and make decisions on how American tax dollars are allocated for autism matters.  They are opposed to curing autism or doing things that will really benefit autistic people.  I don’t believe these people should be involved in making decisions using American tax dollars.

One of these people is named Ari Ne’eman.  He heads a non-profit organization called the Autistic self-advocacy Network.  Since the CARES (formally combating autism) act was made law by congress, his organization has had a chair at the Interagency Autism Coordinating Committee.  In the past he’s stated that he does not believe that autism is a disability or that if it is a disability it is because of societal constraints.  He’s barely afflicted by his alleged autism if at all.  He has implied that people who want to cure autism are morally complicit with murder.  He has stated that the solution for autistic unemployment is to eliminate social pleasantry as a hiring criteria on the job.  He has also called you a fascist saying he would not work with you for that reason.  Therefore, I don’t believe that he or anyone representing his organization should be appointed to the Interagency Autism Coordinating Committee.

Another individual who has served on this committee multiple years is John Elder Robison.  Mr. Robison has stated that there is no need to find a cure for autism.  He has stated that treatments should only be left up to the autistic person and that parents should not have any say in the matter of the health of their own children.  He has stated that parents who seek treatments for their children often do so as a matter of convenience and not to help the child.  He has made the claim that no one had heard of autistic people in the nineteenth century because they blended into the general population due to the type of society it is.  He also has made the insensitive and ignorant comment that most autistic people don’t suffer from autism but rather from depression and anxiety.  I feel these statements trivialize my disability and I don’t feel that Mr. Robison should be on any government committees or supported by or consulted by the government on any autism-related matters.

Noah Britton is another individual alleging to be on the autism spectrum who has been appointed to this post.  He has compared parents who want to help their children with members of the Ku Klux Klan.  He stated that he represented thousands of persons on the spectrum who don’t want a cure.  He has made a mockery of a U.S. government meeting by wearing a raunchy shirt with the letters “my body my choice” emblazoned on the front.

Another individual named Matt Carey has also served on this committee and he has advocated for the ideas of neurodiversity.

I don’t believe that persons such as these or the organizations they represent should have any involvement in governmental policy making related to autism. And I am writing this to you in the hopes that you can do something about it.

Though there is a law enacted by congress authorizing this Interagency Autism Coordinating Committee, these people are appointed by the executive branch of the government, namely the Department of Health and Human services.  I am writing you this letter urging you and your HHS secretary designee, Tom Price, not to appoint these people to the IACC or preferably anyone else to the IACC.  There is no other medical condition other than autism where they have lay people who give input to the government or policy and science matters.  For example, there is nothing like this for diabetes.  We don’t have people like these serving on FDA panels to decide which antibiotics are approved just because they or their loved ones have had an infection.  Ergo, there is no reason for something like this in autism either.

These members of neurodiversity only undermine and trivialize what is a horrible medical condition.  I will forward a copy of this letter to Mr. Price once he is confirmed by the senate to his post.

Your consideration in this matter is greatly appreciated,

Jonathan Mitchell

 

http://autismgadfly.blogspot.co.uk/2017/01/my-open-letter-to-donald-trump.html

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Jonathan Mitchell: Reflections Before the Election


NOTE FROM WALLACE: This note was penned by Jonathan Mitchell, prominent autism advocate, before the recent US election result. I think this piece is of good historical interest, as it captures some of the uncertainty and anxiety in the air at that time.

***

The election is today and I’ve already cast my vote. I wanted to make a blog post before it ends tomorrow.

Donald Trump believes that autism is caused by vaccines. I think he may also believe in a government conspiracy. He also mocked a disabled reporter which means he mocked me and all other disabled people. Read the full story

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Male/Female Sex Ratios and Neurodiversity Revisited (2/2)


One of the problems with this line of thinking is that similar ratios have been reported in other developmental disorders. Attention deficit hyperactivity disorder, dyslexia, intellectual disabilities, and stuttering are among those. The social problems of autism do not exist in these conditions and it would be a lot harder to hide them; a dyslexic either has difficulty reading or doesn’t, a stutterer either talks fluently or doesn’t. Read the full story

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October Surprise from Autism Speaks: They No Longer Want a Cure? (2/2)


Last time:

After the Los Angeles Times published an op-ed piece by Steve Silberman that included the analogy between autism speaks and the NAACP that I wrote about above, Liz Feld, Autism Speaks CEO, responded urging the autism community to work together. This was years after not responding to repeated criticism by the neurodiversity movement, including that they were eugenicists whose only goal was to find a pre-natal test for autism and urge the abortion of autistic fetuses.

The essay continues:

Another significant event took place. Suzanne Wright contracted pancreatic cancer. This was so difficult for their family, that the Wright’s resigned from the autism speaks board and others took over. This made Steve Shore believe that autism speaks was now a safe haven and after some years of unsuccessfully trying to recruit him for their board of directors, he finally decided to get on board and become a team player. Valerie Paradiz who has stated that she has Asperger’s was the second autistic board member to be appointed by Autism Speaks. Valerie has not only been an opponent for a cure for autism, she stated at least according to one media source that autism is not a disability but a strength. Read the full story

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October Surprise from Autism Speaks: They No Longer Want a Cure? (1/2)


WALLACE’S NOTE: Although the following story is about the ‘October Surprise’ from Autism Speaks, the decision in question may have some long term implications.

Autism speaks has published a new mission statement:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Saliently absent is the word “cure” from their mission statement which they had in the past: Read the full story

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Glossy News Contributor Book Showcase 3: Jonathan Mitchell’s ‘The Mu Rhythm Bluff’


Here is the final ebook in this current run of showcases. We’ll have another run in the near future. Here, we have the autism advocate Jonathan Mitchell, and his novel the Mu Rhythm Bluff!

***

Some people are lucky at cards. Others are lucky at love. Drake Dumas is autistic and neither. He’s a 49-year-old virgin who loves to play poker and usually loses. He finds out about an experiment involving brain wave training and a revolutionary technique called Transcranial magnetic stimulation in order to help mitigate his autism. Read the full story

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Has Autism Given me the Gift of Prophecy?


Some persons on the autism spectrum have extraordinary talents and abilities.  These are known as savant skills.  Rainman’s ability to count through an eight deck shoe in blackjack became well-known after the movie of the same name came out.  One individual I went to special ed with could tell you what day of the week any date of the year was.  More amazingly, he could tell you exactly what he’d done that day.  Jerry Newport’s ability to multiply four digit sums in his head were also well known and helped land a movie based on his life’s story, Mozart and the Whale.  Stephen Wiltshire’s drawing ability is also well known.  Others have extraordinary musical abilities.

Bernard Rimland conducted a survey and estimated that ten percent of spectrumites have savant skills.  Researcher Patricia Howlin thought that his estimate was far too conservative and claimed that it was possible that as many as thirty percent of autistic people have some sort of savant skill.  Darold Treffert, an expert on savantism, stated that her figure was probably based on a liberal definition of what defines a savant.

Until recently, I felt left out that I was in the ninety percent of autistic individuals (or seventy percent if you take stock in Howlin’s more liberal estimate) who have no special talents or savant abilities.  In one week from today I will be sixty-one years old and amazingly enough it took me that long to realize that I actually have a savant skill-the gift of prophecy.

Let me elaborate.  The small number of you who have actually followed my blog know that autism has handicapped me in two ways.  It has seriously compromised my ability to make a living.  I’m likely in the Guinness Book of World Records for most jobs fired from.  I have not worked in nearly ten years.  I have also never had a girlfriend and my intensity and relentless negativity has been a turnoff to them.  Some of you may also recall my quote of Freud’s stating that to work and to love are cornerstones of our humanity.  Ergo, I have felt autism stripped me of my humanity.  I’ve discovered that when this issue comes up I can predict what people will advise me to do about these problems and their general comments on these issues.  I can also predict what a neurodiversity proponent will say is the reason I hate my autism so much. This must mean I have the gift of prophecy.

Multiple people have advised me to disclose my disability to perspective employers.  This will solve my problems of being fired.  They will say to themselves “that explains it” if I make a funny movement with my hand instead of being prejudiced against me.  If I make too many careless errors, they will say “that’s all right his autism explains it” or they will make a better effort to work with me.  Or that the Americans with Disabilities Act gives me the right to ask for accommodations and the employer will grant me these accommodations, they’ll work and problem solved.  Ari Ne’eman has even gone so far to state that all social unpleasantries that autistic people commit in the workplace should be completely overlooked.  I get fed up with explaining to them that if there is something the employer does not like about me, they are going to fire me and they won’t overlook errors and knowing I have an autism diagnosis won’t matter.  Also that the Americans with Disabilities Act only gives me the right to ask for reasonable accommodations and being able to go more slowly or asking to put up with loudness and behavior they don’t like aren’t reasonable accommodations under the law.

As far as not having a girlfriend is concerned I should find someone “like myself”, a polite way of saying I’m not suited for a non-handicapped woman and “mixed marriages” are taboo.  Or some unabashedly state “find an autistic girlfriend”.  It does not matter that the ratio of autistic men to autistic women on the milder spectrum is 10 to 1 and at least nine out of ten guys are going to be unlucky.  Actually the number is probably greater than that since “mixed marriages” between a handicapped woman and non-handicapped man aren’t as taboo.  Not to mention the fact that the most desirable autistic women will have no trouble finding a non-autistic man and most of them will prefer them to the autistic man (barring extraordinary exceptions like Mike Carley and John Robison of course).

According to many neurodiversity proponents the reason I don’t believe my autism is a beautiful thing and I’m not celebrating is that I had a horrible domineering mother who taught me to hate myself.  Because she wanted a “normal” child, I somehow sensed this and when I could not make her happy I ended up hating my autism. She’s been called overbearing, domineering, a witch and a shrew by at least some of these people.  It has nothing to do with the fact that it prevents me from living a normal life, being able to make a living or having friends and girlfriends and I have the uncontrollable compulsion to twiddle during the day.  Interestingly enough I actually lived through the Bettelheim era in the sixties where I and my parents had to hear this and castration anxiety was at least in part thought to be the etiology of my disability so it is nothing new for me.

I only wished that I’d known about this savant skill I have earlier.  I would have been able to predict the weather and earthquakes and save lives.  I would have been able to make a fortune playing the ponies.  I would have been an expert poker player able to predict exactly what cards would fall and know what hands to play.

Perhaps it’s not too late, even at my advanced age.  I could work on it and practice and develop this skill or maybe I could get TMS like John Robison did and it would stimulate the right brain areas and then I could actually bring out this latent ability.

Well, in spite of all the hardships that autism has caused me I guess I can take solace in the fact that I have the gift of prophecy.

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Inclusion Humor (II): ‘Hey, Can I Celebrate Your Diversity?’ Uh, no… Please Don’t!


There is a ‘text’ and a ‘subtext’ so ubiquitous now, I feel it would be very unhelpful to attribute it to any one person. I do not wish to blame any one individual, or any number of individuals; clearly, the problem is a very ‘deep’ and ‘structural’ one, rather than being a question of a few people holding a niche view.

The prevailing notion is:

Neurodiversity is great and should be celebrated; what a dull world it would be, if there were no neurodiversity.

OK. How about these ones: Read the full story

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