The Autism Speaks Book List

29 Aug

I want to like Autism Speaks. I really do. I know some very good people working with Autism Speaks. From a very practical standpoint, they are one of the biggest autism organizations and I need them to be doing good.

Unfortunately, sometimes Autism Speaks does things which I really find difficult to support. Recently, I pointed out that Autism Speaks is sponsoring a conference by the National Autism Association. This conference will be hosting Andrew Wakefield to speak. In my view, Mr. Wakefield is a person whose damage to the autism communities can not (and should not) be minimized. Even though Autism Speaks isn’t directly hosting Mr. Wakefield, I feel that it would be good and appropriate to withhold sponsorship of such an event.

During the discussion of that article I decided to search for how Autism Speaks discusses Mr. Wakefield on their website. The Autism Speaks website is a resource for many families looking for information. I found that Autism Speaks has a book list in their Resource Library (Family Services » Resource Library » Books) and this list includes “Callous Disregard: Autism and Vaccines – The Truth Behind a Tragedy”, Mr. Wakefield’s account of the events surrounding the loss of his medical license.

Frankly, I find this a poor resource for autistics, families, well anyone looking for accurate and useful information. Shannon Rosa did what I should have done and contacted Autism Speaks for comment and reported the response the comments here.

Kim, you are awesome. And I agree, working towards real change is hard; it requires a lot of processing power, a lot of reflection, a lot of synthesis, a lot of perseverance—and an eye on long-term as well as short-term goals.

Re: listing Callous Disregard, Autism Speaks pointed me to their resources section’s legal disclaimer:

“Autism Speaks maintains the Family Services Resource Guide as a service to families as a reference tool. Every effort is made to ensure listings are up-to-date. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of those listed. The resources listed on this page are not intended as a recommendation, referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. Users are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism, or the provision of services related to autism.”

But I still think including Callous Disregard reflects badly upon them, and have said so. The conversation continues.

Since that time two small changes have occurred to that page. First, a disclaimer was added (it wasn’t there before, as the Google cache version confirms). The disclaimer:

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on this website is not a recommendation, referral, or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal, or educational professionals. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism.

I agree…to a point. Autism Speaks can’t be responsible for everything said in every resource. However, Mr. Wakefield was found guilty of dishonesty and unethical behavior in his research activities involving autistics. Even if one believes Mr. Wakefield’s account (which is clearly contradicted by the facts), it doesn’t give any real information of value to, say, a family with a new diagnosis. Autism Speaks can and does make a distinction of what books to host. You won’t find “The Empty Fortress” by Bruno Bettleheim on the list (surprisingly enough, it is still in print).

The second change to the Autism Speaks books resource page? The link has been removed to “Callous Disregard”. The book is still listed, but there is no link to the publisher’s site any longer.

The vaccine-autism notion has caused a great deal of harm to the autism communities. So much time and money has been thrown at researching the supposed epidemic of vaccine-induced autism. Much more to the point for an organization like Autism Speaks: this idea has caused a great deal of harm to families, a great deal of pain and, most importantly, a great deal of unwarranted and sometimes dangerous medicine to be practiced on autistics. This is why I would go further than to question why Autism Speaks lists a book by someone proven dishonest and unethical. I would ask why continue to give support to ideas whose time has clearly passed.

For example:

Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
by David Kirby

David Kirby’s book was speculative at best when written. It is now very clearly false. Thimerosal did not cause an autism epidemic. And why list this under the subheading “Medical, Biomedical, Diet Interventions”? Mr. Kirby isn’t anything close to a medical professional and the book is more of a speculative thiller involving conspiracies which didn’t occur to cover up a mercury-induced epidemic that didn’t happen. Here’s the blurb for Evidence of harm:

Evidence of Harm explores the heated controversy over what many parents, physicians, public officials, and educators have called an “epidemic” of afflicted children. Following several families, David Kirby traces their struggle to understand how and why their once-healthy kids rapidly descended into silence or disturbed behavior, often accompanied by severe physical illness. Alarmed by the levels of mercury in the vaccine schedule, these families sought answers from their doctors, from science, from pharmaceutical companies that manufacture vaccines, and finally from the Center for Disease Control and the Food and Drug Administration-to no avail. But as they dug deeper, the families also found powerful allies in Congress and in the small community of physicians and researchers who believe that the rise of autism and other disorders is linked to toxic levels of mercury that accumulate in the systems of some children.

An important and troubling book, Evidence of Harm reveals both the public and unsung obstacles faced by desperate families who have been opposed by the combined power of the federal government, health agencies, and pharmaceutical giants. From closed meetings of the FDA, CDC, and drug companies, to the mysterious rider inserted into the 2002 Homeland Security Bill that would bar thimerosal litigation, to open hearings held by Congress, this book shows a medical establishment determined to deny “evidence of harm” that might be connected with thimerosal and mercury in vaccines. In the end, as research is beginning to demonstrate, the questions raised by these families have significant implications for all children, and for those entrusted to oversee our national health.

Other books of a questionable nature:

What Your Doctor May Not Tell You About(TM) Children’s Vaccinations
by Stephanie Cave

This is a book which links vaccines to autism using, for example, the incorrect comparison of mercury poisoning symptoms to autism, and gives the Wakefield (called “One of the most prominent researchers in MMR vaccine research) hypothesis for MMR causing autism.

Another example from the Autism Speaks book list:

The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic
by Dan Olmsted, Mark Blaxill

This is another in the series of books making the link between autism and mercury. On the one hand, it is nice for Autism Speaks to host a link to a book by people who are such harsh critics of Autism Speaks. But, why be polite when the book is a failed hypothesis wrapped in a bad understanding of science?

Another book:

Vaccine Epidemic: How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children
edited by Louise Kuo Habakus, MA, and Mary Holland, JD

Amongst other topics discussed, this book includes a chapter which is basically a summary of “Callous Disregard”. I know this is getting repetitive, but Autism Speaks could do families a service by steering them away from this.

The book list is long. No one will agree with all the books listed as being accurate and valuable. I have no problem with that. I do feel that some level of screening is being done and more should be done. A new family deserves better than to waste their time, money and emotions on the failed ideologies of the past decade. They are, after all, trying to perform a service with this book list. I am only asking that they follow through on the spirit of this. Perform a service. Pointing them at sources of misinformation is no service. Disclaimers don’t change that.

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33 Responses to “The Autism Speaks Book List”

  1. Robert August 29, 2011 at 22:36 #

    I have not read any of the books that you have listed above, but see where you are coming from. Each of these groups and websites have a purpose. Personally, Just from looking at vaccines, vaccine injuries, etc. I can see the reason for concern. I have my opinions about the risks of vaccines, Wakefield, etc. and I express those opinions on others sites. We have our own non-profit and I may mention a little about the vaccine controversy, but our main goal is to help those who are already affected by autism and to promote awareness among those who are not. Each non profit, website and what not, pertaining to autism has its purpose. Yes, some of those who write about the vaccine controversy step on toes, but that is their purpose. To make people take a closer look and I think that it is good. With so little known about what causes autism and no cure, at the end of the day, one really needs to know what causes so a cure can be found. I think the vaccine controversy is something that needs to be looked at. Wakefield was approached by the parents, not the other way around. Also the ones who discredited Wakefield and called him a fraud are also connected the the Murdoch people over in the UK, so one also needs to start asking what kind of credibility the people doing the discrediting have themselves.

    Anyway, Autism Speaks seems to be into all aspects of autism. To me, they are a good source for certain things pertaining to autism, but I would go to others as well for information. I think that people know that and will tend to take things with a grain of salt and not read everything that is recommended. Personally, we have really only read the books that our therapists have recommended and they tend to be based on similar circumstances to what we are going through with my 2 year old son. The best way to handle autism is for the parents to get information but always go with what their gut instincts tell them is right.

    I am going to check out your site once I get done posting this and may put up a link to your site.

    Robert Hutchins
    Texas Autism – South Texas Region

  2. Vincent Iannelli, MD August 29, 2011 at 22:48 #

    That may be the only site where you will ever find Dr. Offit (Autism’s False Prophets) sandwiched between Dan Olmsted and Andrew Wakefield.

  3. LAB August 29, 2011 at 22:59 #

    Autism Society of America is just as bad.
    They are a negative force in the world of
    Autism, despite good things they may do.
    Holding parent “support” groups with an eye
    toward introducing new autism parents to
    Wakefield and Jenny McCarthy is truly
    evil. Like Autism Speaks, the ASA claims no
    responsibility for this, and say they’re just
    sharing information. But for some reason
    it’s anti-vax/biomed information they most enjoy sharing.

  4. sharon August 29, 2011 at 23:21 #

    I agree Sullivan. I can appreciate an effort to look bipartisan from AS point of view, but there has to be a line in the sand, and those books cross it IMO. If anyone wants to explore the fictitious claims of anti vaxers they can do so easily enough. There is no need for an organisation such AS to supply them thereby adding some potential sense of legitimacy.

  5. stanley seigler August 30, 2011 at 01:46 #

    [lab say] Autism Society of America [ASA] is just as bad.
    COMMENT

    ASA has yet to condemn JRC the school of shock…and noman has condemned ABA for its promotional science…

    the beat goes on and on…we are a society of principle compromising, hypocrites…

    stanley seigler

  6. concerned asd mom August 30, 2011 at 02:17 #

    To be fair, I believe in putting the info out there and allowing for others to decide for themselves. I see nothing wrong with AS doing the same. Typically, I am no fan of AS, but find no fault with them in this instance. Freedom of speech is one of the very core values on which our country was founded.

  7. Anne August 30, 2011 at 05:21 #

    Concerned ASD Mom,

    If we were discussing whether or not people should be allowed to post misinformation in blogs at AS, I would agree that we have the right to free speech and should not censor people.

    However, we’re talking about a list of suggested reading to help people understand autism and make health decisions for their children. What is the point of giving people misinformation based on fraudulent research, particularly misinformation that has the potential for harm? The reason you don’t have to worry about your child(ren) dying or being severely injured by contagious diseases is the success of the vaccine program. When — not if — enough people stop vaccinating, we have outbreaks of these diseases, brought via travel from parts of the world that are less fortunate.

    There’s also a lot of dangerous quackery based on the vaccines-cause-autism fallacy. Children have died from chelation and other quack treatments. Why should we “let” people decide based on misinformation instead of the correct information gathered in real studies?

  8. Kassiane August 30, 2011 at 07:21 #

    Autism Speaks plagiarized and misrepresented me and all I got was a half-assed nonpology!

    Nowhere near enough autistic authors represented on their page. At all. But then, they’re the sort of curebie best defined as “someone who wants autistic children to talk and autistic adults to shut up”.

    …yeah, they’d have to change a *lot* to have anything but contempt from me.

  9. Robert August 30, 2011 at 15:33 #

    See, I think that most people are smart enough to read an opinion or a book and determine if the information will work for them. Honestly, I don’t have to read autism speaks material or Wakefield’s book to determine my opinion on vaccines. I do think though that the people who pursued Wakefield also have questionable motives as well as honesty issues themselves. I have 20 plus years in the insurance field. Everyone has the right to and should question medical professionals as well as medications and vaccines. There may be no scientific link between vaccines and autism, according to many, but there sure as hell are many, many vaccine injuries each and every year. That is why the vaccine injury fund was created. They all knew what was coming in the future. Look at the B.P. oil spill. Was anyone affected when they set up the settlement fund? No! They were forward looking and funds like the vaccine injury fund are only set up due to the Projected and expected numbers of injuries to come. It will get worse until the number exceeds the acceptable loss. To me it is already there. Like I say autism speaks also helps many, many people so before stones are thrown we all need to ask ourselves what we can each do to help the cause of autism. I don’t exactly see how sitting here criticizing Autism Speaks, for their chosen recommended reading list is helping anyone who is dealing with autism. Of course, I think that any organization who actually helps the families dealing with autism, as opposed to just posting comments and information on the web that criticizes others is more beneficial to this world than the other.

    Had considered placing a link to your website on mine, but after reading the criticism from your readers, I think that I will pass. Sorry, but I don’t want to expose my readers to such pettiness!

  10. Julian Frost August 30, 2011 at 16:37 #

    @ Robert:

    See, I think that most people are smart enough to read an opinion or a book and determine if the information will work for them.

    The problem is that a newcomer to a field can easily be fooled by half-truths, distortions, and plausible sounding lies. I learnt that inconvenient truth the hard way.

    I do think though that the people who pursued Wakefield also have questionable motives as well as honesty issues themselves.

    Leaving aside the ad hominem, how does that change the fact that Wakefield committed numerous ethical violations, withheld his multiple conflicts of interest, and flat out lied in his “Case Study”?

    I don’t exactly see how sitting here criticizing Autism Speaks, for their chosen recommended reading list is helping anyone who is dealing with autism.

    Autism Speaks is punting books that lie about what causes autism, and discourage vaccination. If you can’t understand why we might have a problem with that, or that criticising them is a valid response, then maybe you need to rethink.

    • Sullivan August 30, 2011 at 17:46 #

      Robert,

      forgive me for saying so, but your comment seems to be of a common type: the “I can criticize you/the government/medical community/etc. but when you criticize you are wasting-your-time/trying-to-censor-others/etc.” type.

      “See, I think that most people are smart enough to read an opinion or a book and determine if the information will work for them.”

      Why do so many people fall into the smart/not-smart trap? Smart people make bad decisions every day. Non-smart people make good decisions every day. Being smart is not a shield against doing “dumb” things. Quite the contrary. Being smart leads many people to a level of arrogance that makes them quite prone to making poor decisions.

      Let’s face it, there are some really smart people who have made some really bad decisions when it comes to the autism/vaccine questions. In Mr. Wakefield’s case, we now know that this wasn’t merely a case of making bad decisions, it was dishonesty and fraud.

      I don’t exactly see how sitting here criticizing Autism Speaks, for their chosen recommended reading list is helping anyone who is dealing with autism.

      Autism Speaks can and does change its behavior based on criticism. I don’t flatter myself that a single blog post will make a major change, but I know that they have reacted. I also know that at least one executive at Autism Speaks is quite aware of this blog.

      For example of criticism making a change: try to find the “I am autism” video. Here’s the original link to the Autism Speaks page: http://www.autismspeaks.org/press/united_nations_world_focus_on_autism_2009.php. From this link you can find the YouTube video link. Click the link and read “this video was removed by the user”.

      Your example of the vaccine injury compensation fund is poor on many levels. No one here is denying that there are rare instances of vaccine injury. The question is whether autism is a vaccine injury. Autism does not equal vaccine injury. One can not say, “my kid is autistic, therefore he/she was injured by vaccines”. Unfortunately, there are people and groups who promote that message, much to the harm of autistics and families looking for good information. One can not say, “there has been an epidemic of autism caused by vaccines”. Again, people and groups do say so and it is injurious to families and autistics.

      On a second level, the example of the vaccine injury fund is poor. It was created in response to the belief that the DTP vaccine was causing a high level of injuries. Later research showed this not to be the case, and those injuries were removed from the table. I.e. it wasn’t created in response to vaccine injuries, but to the perception that a certain vaccine was causing injuries.

  11. stanley seigler August 30, 2011 at 17:34 #

    [Julian Frost say]If you [robert] can’t understand why we might have a problem with that [AS book list, etc], or that criticizing them is a valid response, then maybe you need to rethink.

    COMMENT

    maybe we all need to rethink…may need to recognize the good, bad, evil in most organizations/blogs, etal…criticize where necessary and give credit when due…and;

    be aware when the good they do is outweighed by the evil (most unintentional) they do…old saw say: road to hell paved with good intentions

    AS and ASA have done good…and they dont have hidden agendas…just misplaced priorities…and compromised principles.

    stanley seigler

  12. JJ August 30, 2011 at 19:07 #

    2005 IRE (Investigative Reporters and Editors) Award Winners

    IRE MEDAL: The highest honor IRE can bestow for investigative reporting is the IRE Medal. This year’s medal winner for best book is:

    Evidence of Harm: Mercury in Vaccines and the Autism Epidemic — A Medical Controversy — David Kirby

    Judges’ comments: Autism, rare in the past, is exploding in the United States , where it is now found in one in 166 children. Attention-deficit disorder also has skyrocketed. And 1 in 6 children today has a learning disability. David Kirby investigated whether one of the causes of these childhood afflictions is thimerisol, a vaccine preservative that contains mercury, a well-documented neurotoxin. In the 1990s, the mercury-containing additive was injected into children far in excess of federal safety levels. Kirby told the story of stonewalling, denial and cover-up by federal regulators, medical groups and the pharmaceutical industry. And he documents covert efforts by some of those same powerful forces — along with the U.S. Congress — to grant blanket immunity for drug companies that put mercury in vaccines. Like so many scientific controversies involving complex science and big business, the topic is controversial. Kirby’s careful and meticulous reporting is exemplary in its balance, accuracy and documentation.

    • Sullivan August 30, 2011 at 19:14 #

      So? it was a best seller too.

      It was wrong. That, in the end, is what counts. “Kirby’s careful and meticulous reporting is exemplary in its balance, accuracy and documentation.”

      David Kirby used Lynn Redwood’s research to write a book. Surprise, it told the story Ms. Redwood wanted told. And, it was wrong. Mercury in vaccines did not cause an autism epidemic. 5 years ago David Kirby was telling us all how the autism rates were about to fall due to the removal of mercury from vaccines. Didn’t happen. He moved the goalposts a few times and is now on to other projects.

  13. Susan August 30, 2011 at 20:18 #

    Our nation is founded on the notion of free speech and free press.
    I’m not into banned books. Let everyone read what they want and come to their own conclusions.

    I’m far more concerned that Autism Speaks doesn’t have anyone actually autistic in their ranks.

  14. Sullivan August 30, 2011 at 20:31 #

    There is a common theme when criticisms like mine are made: people claim censorship.

    It isn’t censorship to cull the bad from a booklist. No one is saying “that book shouldn’t be published”.

    As I noted above, Autism Speaks didn’t include “The Empty Fortress” in the list. Good thing, too. They aren’t censoring Bruno Bettleheim. They are making a choice of what to list.

    As an aside: Susan, do you think that John Robison is not autistic? He works for Autism Speaks.

  15. Dedj August 30, 2011 at 21:11 #

    “Let everyone read what they want and come to their own conclusions.”

    I agree, book lists can unduly influence people into reading material they otherwise might not have come across themselves.

    Everyone should be able to read what they want as long as they are doing it for themselves and not because it was on some list somewhere that they though they ‘had to’ read in order to keep up.

  16. Susan August 30, 2011 at 21:50 #

    Thanks for letting me know about John Robinson. It’s a start…

    I think book lists try to encompass all aspects of a controversy, as they should.

    • Sullivan August 30, 2011 at 22:12 #

      Susan,

      If this were, say, a list of all books on autism I would agree. Or a list of books on the history and social influences of autism advocacy and research.

      But, this is supposed to be a part of “family services” and “resource list”. Take, say, Callous Disregard as an example. What does this provide a family in the way of service or resource? Leaving aside the great number of factual errors in the book, it is a book describing Andrew Wakefield’s side of the story. Not a real discussion of what can be a service for a family.

    • Sullivan August 30, 2011 at 22:18 #

      Susan,

      check out the Autism Speaks blog, here, for a discussion of how this list came about.

      Autism Speaks asked facebook users, ““What books about autism do you think are most helpful for newly diagnosed families?””

      I would posit that at best “Callous Disregard” is not helpful to newly diagnosed families. Further, I would suggest that it is actually harmful.

  17. Susan August 30, 2011 at 23:23 #

    Well, we’ll just have to disagree and leave it at that. I think newly diagnosed families are very concerned about the vaccine controversy and would want to know the spectrum of opinions about it.

    • Sullivan August 31, 2011 at 02:38 #

      Because newly diagnosed parents have so much extra time on their hands, and the vaccine causation idea is so hard to find?

      Try this. Use the search function on the generation rescue website. Enter callous disregard.

      If GR isn’t plugging Mr Wakefield’s book, why should autism speaks?

  18. Anne August 31, 2011 at 00:00 #

    All the people commenting here who think “vaccines cause autism” is a good thing to promote to parents, would you also want your local science center to recommend books that say the Sun orbits the Earth, and the stars are just lights stuck to the inside of a big sphere around the Earth, Sun, and planets? Or, maybe that gravity is caused by fairy dust, and if you wish hard enough you can fly?

    We have oodles of evidence that the Earth orbits the Sun, and the stars are other suns throughout an unimaginably enormous Universe. We don’t know what causes gravity, but fairy dust isn’t it, and wishing won’t make gravity stop working. We know these things because scientists have done experiments, lots of different experiments, and come to the same conclusions after finding out why the old ideas were incorrect.

    Likewise, scientists and doctors have done lots of different studies, and the best information all agrees that vaccines don’t cause autism. There is no more reason to “consider” that idea than there is to “consider” the idea that the Sun orbits the Earth or that you can jump off the roof and fly if you wish hard enough.

    What ideas about autism are obviously wrong enough that we don’t need to worry about them? We’ve agreed it isn’t refrigerator mothers (Bettelheim). What about witchcraft, demonic possession, or changelings? That’s what people used to think back in the very old days. Why reject those ideas and take vaccines seriously?

  19. Science Mom August 31, 2011 at 00:59 #

    I think book lists try to encompass all aspects of a controversy, as they should.

    I can’t top the analogy Anne made but will add that there isn’t a controversy, it’s only a manufactroversy. No one, particularly an organisation who tauts itself as a legitimate autism aetiology research organisation, should lend any credence to debunked and/or fraudulent publications for the sake of presenting false balance. I would like to support AS, but won’t as long as they continue to give even a patina of legitimacy to patently false “autism research” and don’t spend their money more judiciously.

  20. stanley seigler August 31, 2011 at 04:24 #

    [susan say] I’m far more concerned that Autism Speaks doesn’t have anyone actually autistic in their ranks.

    COMMENT

    me too…ditto most advocacy org’s…

    stanley seigler

  21. Anne August 31, 2011 at 10:14 #

    John Robison has made himself a rather controversial figure by signing on with AS as their science advisor (and token autistic). Obviously someone with a natural talent for engineering is the most qualified person to review grant proposals for neuroscience and genetics research. Here’s what he has to say about it:

    http://blogs.plos.org/neurotribes/2011/05/18/woof-john-elder-robison-living-boldly-as-a-free-range-aspergian/

    Silberman: How did you end up becoming one of the first autistic people in an official advisory position with Autism Speaks?

    Robison: It happened because I read so much criticism, not just of Autism Speaks, but of the NIH and the CDC. So many people were writing online about how we shouldn’t be spending money on this or we shouldn’t be doing that. I felt like, “What do you guys want to do? Stand on the streetcorner, holding up protest signs, or do you want to go inside and actually make a difference? I frankly think you’re wasting your time protesting on the street and writing about it on a blog. If you want to change how things work, you join the organization and change it.” So that’s what I decided to do. After my book came out, all these organizations invited me. I have not spontaneously offered myself up to anyone. I’ve just responded to invitations.

    Silberman: Has there been anything challenging about serving with these organizations?

    Robison: No, I haven’t found it challenging at all. What I’ve found is that I’m able to absorb the general synopsis of all the funding proposals, rank them in my mind, and form an opinion. I’m very vocal. I speak up for those proposals that I think we should or shouldn’t be advancing and why I think we should do it.

    Silberman: Have you ever argued for having more autistic people in these advisory roles?

    Robison: Yes. I have argued for having more autistic people on the boards, but it’s not obvious to me who those people would be. I don’t have a lot of personal knowledge of autistic people with an interest in science. Most of the people in the autism community who are critical of the policies of these various groups are not people with any real interest in science, or at least they don’t express the interest in their writing that I can see. Without an interest in science, they don’t have an obvious fit with the boards.

    I find it hard to believe there are no autistics with an interest in science. Michelle Dawson, for starters, and Mark Romoser did the statistical analysis for some of the early prevalence studies of Asperger’s out of Yale. There’s also someone who doesn’t want to be outed (yet) with a background in neuroscience and cell/molec biology. (She’s pretty uppity, and would probably get in trouble, though.) If Mr. Robison attended neuroscience or genetics conferences to keep up with research, he’d probably meet a few PhD autistics… whether or not they realized they were on the spectrum themselves. But, since he has such a natural talent for engineering, obviously the brain is enough like an engine or electric guitar that he doesn’t need to worry about keeping up with biology or medical research.

    And he’s completely bypassing the issue of autistics having roles other than grant review, such as reviewing proposed advertising to see if it is horribly demeaning to autistics.

    Anyway, I decided not to make the 2-hour trip to see him speak a couple of months ago on his book tour, after reading in this interview that he basically made fun of neurodiversity. I’m sure his bosses at AS were glad to see he’s firmly in their camp.

    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 just 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.

    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 –

    Robison: In the autism world, people look at your behavior and say, “He’s acting like a jerk — I’m gonna treat him like a jerk.” If you’re a gay guy and you’re a jerk, people think you’re a jerk; but if you’re a gay guy and you’re nice, people think, “He’s a nice guy.”

    Silberman: Not always, but I hear what you’re saying. So, you weren’t diagnosed as being on the spectrum until you were 40. What did being diagnosed in middle age do for you?

    Robison: It showed me, for the first time in my life, the underlying cause for my exclusion from society. That was a tremendously empowering and liberating thing. Before that, how could I ever know that everyone else isn’t just the same as me? People would say “Look at me, John,” and I believed I was fully complying with that request. Of course, in the opinion of other people, I wasn’t complying at all. But I had no way to know that. So that’s an example of how diagnostic knowledge can be tremendously empowering. You really have no potential to have a good life if there’s some fundamental difference between you and everyone else and you don’t understand what it is. There’s no way you’re going to integrate yourself with everyone else in ignorance.

    So he’s basically summarized autism as a lack of social skills that makes other people think you’re a jerk, and it’s your responsibility to learn these skills. Never mind problems with sensory over/under sensitivity, coordination, executive function, etc. that would be considered disabling in people with other congenital syndromes or acquired brain injuries. Never mind that someone who perceives fluorescent lights as a strobe flashing 60 times a second is having a hard time not running away, it’s their responsibility to have perfect manners and ignore this sensory assault, because nobody is going to believe they have a disability.

    I’d love to hear what Sarah Triano would say if he had the audacity to spout that kind of bigotry about invisible disabilities in front of her. Autistics are not the only people who don’t “look disabled” but need protection under the ADA.

    Yeah, I think he fits in really well at Autism Speaks. Autistics are OK as long as you can’t tell they’re autistic, so buy his book.

  22. Anne August 31, 2011 at 10:15 #

    Sorry about the blockquote fails above. There’s no preview here, and I didn’t realize my blockquote tag had to be applied to each paragraph.

    • Sullivan August 31, 2011 at 18:08 #

      Anne,

      I know that problem and it bugs me too. I took the liberty of adding the blockquote formatting. If this bothers you in any way let me know and I’ll remove the formatting.

  23. Kassiane August 31, 2011 at 19:38 #

    The above is why John Robison doesn’t speak for me. It’s not about social skills. Or not just.

    And wow, the ultimate ableism fail…”we’re just 1% of the population so we have no rights if we can’t fit in” makes my brain explode. Way to set civil rights back a few decades.

    • Sullivan August 31, 2011 at 19:55 #

      Kasiane, Anne,

      I spent some time with Mr. Robison at IMFAR. It told him at one point that we agree on more than we disagree. However, the above highights points where we disagree. To me the whole point of a diversity discussion is to leave aside the “We are the majority” viewpoint. Also, “I don’t have a lot of personal knowledge of autistic people with an interest in science. ” I seem to recall one notable example of such a person responded to that blog post. Certainly there are more and it probably doesn’t take much digging.

      More to the point–there is “an interest in science” and “an interest in the way science is performed” and “an interest in the information we would obtain from science”. I don’t think it would be hard to find a number of autistics who would be very interested in sharing their viewpoints on the ethics involved in autism research. I don’t think it would be hard to find a number of autistics who would be interested in sharing their viewpoints on what results are needed in autism research.

      One can ask how many people on the Autism Speaks review committees are parents whose primary interests are not the science itself, but the direction and results of the science.

  24. Anne September 1, 2011 at 09:02 #

    Thanks, Sullivan and Kassiane.

    Yes, Robison’s quote is full of ableism fail, aka curebie-ism.

    A lot of people responded to the comments at PLoS that he didn’t speak for them (or their autistic loved ones) either. AS managed to find a prominent autistic who shares their views of autism, as a token autistic to shut down complaints that they don’t have any autistics involved.

    There are at least two ways to interpret “reviewing” grant applications. One is understanding the science well enough to know whether or not a proposal could work and be statistically valid. Another is simply deciding what research goals are ethical and useful. I don’t see how he represents autistics properly under either definition. Would he even object to the infamous “I Am Autism” video?

    I guess it could be worse… there’s an Aspie I won’t name who sees himself as vaccine-injured and makes a hobby of attacking bloggers and journalists as “pharma shills.”

  25. sharon September 2, 2011 at 04:15 #

    Yes Anne it could be worse. A lot worse. I like John, and enjoy his books. I understand he does not represent all the views of those on the spectrum, and it would be impossible for any one person to do so. I’m off to see him next Tuesday in Perth, Australia. As the parent of a young child with ASD his perspective is of interest to me. So though, is yours and Kassianes.

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