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.