Tuesday, March 9, 2010

spectrumite appointed to an autism speaks board

I see that commercially successful memoirist who writes about his Asperger's syndrome, John Elder Robison, has been appointed to a scientific review board of autism speaks. Now neurodiversity will have a hard time whining about how autism speaks is excluding autistics. However, autism speaks has advertised to their potential donors that they are looking for a cure for autism. Yet they have appointed someone who writes on page 5 of his book that no cure is needed for at least some forms of autism. Of course, Robison, when he wrote those words a few years ago, was only talking about Asperger's and not the full spectrum of autism, so it is unclear to me how he would feel about a cure for all autism spectrum disorders (yes disorders not different way of thinking). However, this is not Robison's first gig as a research reviewer. in a previous gadfly post I wrote about his appointment to a public sector funding body, along with fellow anti-cure spectrumite Stephen Shore and becried the fact that these persons were appointed for their ability to garner publicity from conferences and/or books and questioned their qualifications for these posts as well as some of their anti-cure writings and viewpoints when in fact the passage of the combating autism act states quite clearly that the U.S. government has a pro-cure pro-prevention policy.

John Robison read what I wrote and offered a very polite commentary to my blog post that was his position on the manner and suggesting I might write to the body if I wanted to be considered at some point. He also elaborated on his position about a cure, equating it with abortion:

. . . First of all, as I said in response to another of your posts, I have never been opposed to therapies that address weakness in you, me, or anyone else. When working with NIH, I did my very best to vote for research that furthered the goal of finding ways to make all our lives better. What I am opposed to is the concept of autism elimination via abortion of future generations. That is what’s meant by some people when they talk “cure,” and I don’t like that. Another thing I don’t like is the idea that certain people may want to mandate therapies for those of us on the spectrum. I believe we all deserve the right to choose. Personally, I would choose to try something that offered a good shot at making my life better, but I know others would choose to remain the same, and that’s their right.With that in mind, I recognize that nonverbal autistic people present a difficult moral dilemma should therapies be available, but that’s beyond the scope of this post.

So it would appear to me that Robison is confused on the standard definition of a cure as defined by my dictionary:

To restore to health soundness or normalcy.

Though some might not like the word 'normal' and even I question its use in some instances, this is how the dictionary defines cure. It has nothing to do with abortions. As far as I know, John, has never stated that he believes autism speaks is deliberately trying to find ways to abort autistic fetuses as "the autistic bitch from hell" and other neurodiversity proponents have alleged, I have to wonder what his position on this is.

As far as imposing treatments on others. We are talking about children who are not of the age of consent. Parents have a right to consent to surgery treatments, cancer treatments for their children, so why should autism be any different according to Robison? Also, we have compulsory education for children which the government mandates but parents control.

As far as a moral dilemma for nonverbal children, then I don't see why someone serving in any capacity as an advisor to autism speaks should have a question about this. A person who is nonverbal might not be able to communicate effectively about their desire for a certain treatment even with an augmentative communication device. I am reminded of Kevin Leitch of the right brain left brain blog who stated that he would only seek a cure for his nonverbal daughter if she asked him to. Now what sense does that make? I am pretty sure the Wright's grandson was nonverbal. Jon Shestack and Portia Iversen who are members of the board of directors have a son who now nearly 18 is nonverbal. As a matter of fact I was nonverbal from age 2-1/2 to about 4, though I don't think Robison was. I believe it was a mistake to introduce Asperger's into the diagnostic lexicon and include them with persons on the autistic spectrum and include them with people who had a speech delay. So much of the research funded by AS has its intent and interest in helping persons who are nonverbal. It is not likely that Robison prior to 1994 would have been able to be considered a stakeholder or client in these research endeavors so I find these statements at least somewhat questionable.

We also have to wonder what neurodiversity's reaction will be to this appointment. As I said before, at the risk of being repetitive, they will no longer be able to engage in angry tirades about autistics having no positions of power in AS. Will they be dancing in the streets? Of course, it would not be surprising if Robison got some of the slurs that have come my way, such as 'quisling' 'house autistic' or 'Nazi' or 'sell out;. Only time will tell. Autistic autism researcher Michelle Dawson happens to be one of the more vociferous individuals on this end. She has repeatedly criticized autism speaks for not having any autistics on the board or in positions of power. This is in spite of the ironic fact that AS has awarded a grant of nearly half a million dollars to the group that she works in, so they are certainly interested in funding autistic autism researchers including an autistic autism researcher who says that the people who raise money for her research "make her sick" and that the organization ideally wishes a short future for persons with autism.

Robison stated in the above linked to post that he hoped to find some common ground between the pro-cure people and neurodiversity and that he hoped to serve both parties as a member of this board. I must respectfully disagree with him. The goal of autism speaks is curation and prevention (not abortion) of autism. Their goals have been quite plain since their inception as well as their predecessors Cure Autism Now and the national alliance of autism research. There is no place at all for neurodiversity proponents who call cure seekers and persons who want to prevent a child from becoming autistic in the first place eugenecists or nazis at the autism speaks table and I can only wish there never will be. I can only criticize autism speaks for trying to support neurodiversity rather than work against it, such as their removal of the I am autism video from their main website and their funding of the Laurent Mottron group (which Michelle Dawson is a part of) and having Morton Gernsbacher review scientific research for AS. I wish these activities would cease immediately and that AS could sever their ties to ND completely but I suppose that is unrealistic.

Robison also gives RDI and ABA a shout out. To the best of my knowledge there have been no studies of RDI published in a peer reviewed journal. I don't think he understands all of the problems with ABA, how it is falsely advertised as having proven efficacy without aversives, the inequivalency of the intense treatment groups versus the control groups in Lovaas (1987), the lack of of adult outcomes in ABA therapy and the multitude of other problems with ABA. When CAN was in existence shortly before its merger with AS they funded behavioral therapy studies, violating their own bylaws to only fund medical research.

Of course in spite of these criticisms I believe that John Robison does have the best of intentions and does want to help promote research that will help those on the spectrum and I wish him luck in his new position and endeavor. I suppose we will have to wait and see what the outcome and reaction to all of the parties concerned in this.


17 comments:

Roger Kulp said...

OK,how is this all that much different than AS funding research by Larent Mottron?I think it's just another example of AS trying to please everyone,especially neurodiversity.The problem with AS is that they have never taken a clear position one way or another about neurodiversity.This was their biggest mistake right from the start,and maybe it's a little too late in the game for AS to take this position.

(I doubt when AS was founded,they were even aware there was such a thing as neurodiversity.)

AS knows neurodiversity is anticure,but I guess they feel they need to reach out out to autistic adults,and they need a high profile face for this.And it just so happens the highest profile autistic adults out there are both anticure,and those with the mildest forms of autism,like Grandin,Robinson,and Ne'eman,who are able to get out in public and do stuff.

(I include Temple Grandin,because her autism seems to be pretty mild now.)

Maybe if you had written best selling books,and had a movie made about your life,AS would be inviting you to be on their board,too. ;-)

jonathan said...

I don't think it is quite the same Roger, as Robison acknowledges that autistics do need help and Mottron has stated that autism is not a disease or disorder but merely a difference and I don't think Robison ever said that severely autistic people have made great contributions to arts and sciences as Mottron collobarator Morton Gernsbacher did. Also, I don't think Robison is getting money for this so it is not like they are funding something completely antithetical to their goas as they do in the case of Mottron.

I agree that autism speaks should take a stance against neurodiversity and some of the things Jon Shestack wrote on the comments section of my blog are a good start.

Certain concessions, such as not funding Mottron, not claiming autistics can't have friends without these insurance bills passing, and their autism in the workplace dog and pony show would have to be eliminated as well as other concessions would have to be made before I would consider serving on any board for autism speaks in any capacity and I doubt they would accommodate me, but yeah, you're right, if my pipe dream of being a best selling novelist had been realized and they had made a movie about me, I guess I would have a better chance. The celebrities do have a better chance than we average joes do.

SM69 said...

If an organisation, such as Autism Speaks is supposed to be dealing with autism, it either deals with the whole spectrum or if not, it must specifies their remit of work. I agree many organisations do not clarify this well and many cover one area of the spectrum mainly. The NAS for example focuses a lot of AS/HFA and does not cover the areas commonly seen in the lower end of the spectrum, communication, or any common co-morbid health issues. I prefer a fair and comprehensive covering of autism, whilst of course AS/HFA is not affecting individuals as severely as LFA is, AS people can none the less have very hard time in their life, and this must also be taken into account. But at times, it is not possible for an organisation to deal with everything because the needs and specificities are so different. We are facing this all the time at our Trust, especially with AS adults and in those instances, I prefer to work with partner organisations in order to assist better the individuals. But what is done is made clear right from the outset.

The constant arguments, falling apart, inconsistencies, at times bullying that go on continuously on the Internet is an integral part of the AS/HFA disability. It is a problem, but NT people, especially those who pretend to work in autism should be able to accommodate this. I don’t mean accept it, but rather take it at face value, and find ways to respond without causing further backfire. I often use this image; ASD people can express their emotions (e.g. anger, meltdown) on a scale of 0-10 with little abilities to grade to the intermediate stages; they can go from 2-to 10 when most people can go in gradual incremental stages. If you perceive a level 10 in someone’s outburst or meltdown, it does not mean a 10 necessarily, it may mean a 3. We need to use our knowledge and analysis to really understand what is at stake for the ASD person and how we should respond. I think the rants of the ND people should be calmly taken into account, they have a points for themselves, let’s use their point together with other points as part of a more wholesome understanding of the spectrum. I would not be bugged down by their denial of others on the spectrum or their bullying, it’s just part of who they are and this will never be taken seriously in my opinion, even if this can be convenient simplistic views to some (e.g. NAS and SBC). I presume this is what Autism Speaks is doing in their approach of ND people, none the less some of their research target the needs and issues seen in LFA.


RDI evaluated in a peer reviewed Journal Autism
Autism, Vol. 11, No. 5, 397-411 (2007)
DOI: 10.1177/1362361307079603.
http://aut.sagepub.com/cgi/content/abstract/11/5/397

farmwifetwo said...

Completely OT.. but I thought this might interest you.. it's a blog post from one of our national papers.

http://network.nationalpost.com/NP/blogs/fullcomment/archive/2010/03/10/barbara-kay-the-bourgeois-tyranny-of-the-fully-abled.aspx

Ender said...

About the cure via abortion route, how many kids with Down's Syndrome have been aborted in the past 10 years? Why do you think this isn't the most likely thing to happen to autistics and aspies? Much of the research out there that AS is funding is about making prenatal tests, that serve one primary purpose. It was interesting going to an presentation (thanks to my connections with GRASP) where they were talking about doing just that. So, two questions to you, is this an acceptable thing to do? and, why do you feel that this wouldn't happen if not?

jonathan said...

Ender, I challenge you to show me one example of a research project that is being funded that is developing a prenatal test and I am not talking about general genetics research.

As to the rest of the answer to your question, you need to read my posts more carefully, as you apparently check out this blog regularly and I have addressed exactly the issues you have talked about on multiple occasions. In fact, you can go back to the post where I dissected Ari Ne'eman's recent essay that was published in DSQ. I think I addressed most if not all of your questions there and I don't feel like chewing my cabbage twice.

Perhaps your traumatic brain injury makes this difficult for you to do.

pdbrit said...

Dear Mr. Robison,

"Another thing I don’t like is the idea that certain people may want to mandate therapies for those of us on the spectrum. I believe we all deserve the right to choose."

IF ONLY MY SON HAD A CLUE ABOUT HOW TO CHOOSE THERAPIES AND IF HE WANTED THEM OR NOT. MAYBE HE'S TOO BUSY FLAPPING HIS HANDS, WALKING ON HIS TOES, DEALING WITH DIARRHEA AND HAVING A MAJOR MELTDOWN DUE TO A PASSING FIRE TRUCK WITH SIRENS BLARING. YEP HE'S A LITTLE TOO BUSY TO MAKe THOSE CHOICES FOR HIMSELF AND HEAVEN FORBID WE EVER CURE HIM. I might actually get to purchase less than 4 DVD players a year. You and I will never agree on much. I will die trying to find a cure.

Anonymous said...

"Ender, I challenge you to show me one example of a research project that is being funded that is developing a prenatal test and I am not talking about general genetics research."

Good points about how general genetics research isn't just about prenatal tests!

Lots of people who don't want to have babies with Tay-Sachs or sickle cell anemia use genetic testing to avoid that, Not to test fetuses and abort the ones with 2 copies of the recessive gene, but to test *themselves* and avoid conceiving with other carriers of the recessive gene if they learn they are carriers themselves.

How much it would offend Ender if Asperger's or autism turns out to be on a recessive gene and a couple of carriers choose to not have children together, or have protected sex with each other and adopt children together instead of conceiving children together, instead of making children very likely to have Asperger's or autism...?

jonathan said...

Yes, Ender and other ND's most likely don't understand about the types of genetic testing you are talking about for autosomal recessive conditions. Of course, though sometimes autism can be caused by an autosomal dominant genetic condition such as tuberous sclerosis, it is likely that most autism's are due to multiplex genetic factors that are interacting with environmental factors, so the comparisons between the testing that is currently done with Tay-Sachs and Sickle cell anemia is most likely even less relevant for autism and the multiplex factor interacting with environment makes it unlikely that those tests will be developed anytime soon for autism, let alone a way to abort a potentially autistic fetus.

John Elder Robison said...

Pdbrit, I certainly hope science will lead us to answers that will help your son. If I can help find that path I will surely try to do so.

The fact that I believe people should be allowed to govern their own lives whenever possible does not mean I am opposed to guardianship when someone is not able to make life decisions. If your son is unable to make a treatment choice himself, and you have a therapy available that has a decent chance of success, I have no ethical issues with you choosing for him. All I can do is hope the people who choose for those who cannot choose for themselves do so from love and compassion and not their own self interest.

Ender said...

Jonathon, genetics tests come first, then prenatal tesets. You can't get the prenatal tests without getting the genetic tests first. Yes, it might end up being discovered before conception, but then again there are many disorders that don't have that yet.

Hannah said...

Honest Question:
What if genetics teach us that people with genetic marker X when exposed to toxic chemicals (or environmental triggers) A, B, and/or C express the symptoms of autism. Then, if someone tests a fetus, or themselves prior to conception and chooses to avoid chemicals A, B, and C -- is that ethically problematic for ND people?

Personally, I think this is what we are likely to find out with various degrees of complication. As a sibling of a person significantly negatively affected by his autism, and as a newly married woman, this is something I consider regularly. As much as I love and respect my brother for who he is, I would hate the idea of creating a child who would suffer as much as he does. In choosing whether pregnancy or adoption is a better choice for building my family, I look forward to the possibility of testing for the SUSCEPTIBILITY of autism.

What advice does someone with a ND perspective have for people like me?

Catatab_Tabimount said...

I am not really concerned that a prenatal test will be coming soon. Autism is a polygenic condition that CAN be influenced by the environment, but most of the traits are phenotyped by certain genes. That is why there is a smooth spectrum, rather than just one recessive autism gene masked by an NT gene. It will be difficult to try detecting every single gene causing autism, and it is not worth investigating.

Medically lessening the very worst behaviors such as violence or self injury is not unethical at all. Understandable forms of communication should also be mastered, because communication is the key of life. An autistic person should be progressed just to the point of decision capability before it is decided that he or she receives a full cure. Then that should be the individual's choice.

Fighting for acceptance is fully worth it. Autistics do not deserve to be labeled as subhuman, no matter how severely affected they are. Describing autism as a horrific disability is a blatant oversimplification that promotes nothing but fear.

Anonymous said...

"Fighting for acceptance is fully worth it. Autistics do not deserve to be labeled as subhuman, no matter how severely affected they are."

Right on! Nobody deserves to be labeled as subhuman, no matter how severely affected they are by having autism or how severely someone else who has autism treats them.

Stephanie Lynn Keil said...

"Describing autism as a horrific disability is a blatant oversimplification that promotes nothing but fear."

But autism is a horrific disability for some. It may be a small minority but they still exist.

Read This

Kate said...

SM69,

This is off-topic, but I'm interested in what you say here about the NAS:

"The NAS for example focuses a lot of AS/HFA and does not cover the areas commonly seen in the lower end of the spectrum, communication, or any common co-morbid health issues."

My experience has been the exact opposite to yours. When I decided to try living at least semi-independently my care manager got in touch with the NAS about their residential services. Theoretically they offer a full range of services, starting with 24-hour care and support for people with LFA (my mother works in one of these houses) and progressing to an outreach service for adults with AS who can manage almost totally independently.

My own diagnosis is AS, but I can't cope in my own home with just two or three visits per week; I need someone to assist me most days. So I looked into moving into an NAS supported living project. It was a lovely house with a great team of staff, but all the people there were so much more severely affected than I am (in terms of language and communication, at least) that I knew I wouldn't fit in. Most of the residents had some degree of learning disability in addition to their autism, and I've found this to be true of almost all the NAS residential services. It is a problem for me, as I need a lot of support with basic tasks of day-to-day living, but intellectually I'm very capable.

SM69 said...

Kate,

You most likely refer to various group homes and some 24hr school placements, like Daldorch house and yes some can care for LFA, though the number of places available are very limited and there is a great geographical disparity. The NAS does not provide more pro-active interventions, but rather instead gives caring and accommodation of people's differences and behaviours and a few additional services that are insufficient. What I meant was mostly with reference to their magazine, topics covered, schemes etc, which do target HFA/AS issues a lot more. The LFA end is essentially care for with compassion, which is still good, but a lot more is needed unfortunately. In that respect, your experience highlights there is unlikely a full appreciation of the individual needs. I am not saying that the NAS does not do a good job, but rather that it is insufficient, and that the LFA is particularly affected by this, though I understand your situation is difficult too.

Depending on where your are based in the UK, you might want to look at placements such as these:

http://www.autismconsultants.org/tov/TOV.pdf

This excellent from what I have heard:

http://www.garvaldedinburgh.org.uk/content.php?ref=page_home

or Camphill:

http://www.camphill.org.uk/


Good luck, the issues you report are commonly reported by others like yourself. Continue seeking help until you have find a place you feel is right.