Wednesday, November 27, 2013

ASAN's joint letter to Autism Speaks' sponsors

I see that the Autistic Self Advocacy Network is at it again.  They have recently written a letter urging sponsors of Autism Speaks to withdraw their support of the organization they loathe so much. 

To support their position they use the same old and tired talking points that we've heard from them ad nauseum and not coming up with any new ones.  For any of the uninitiated who happens to read this and are far less jaded than myself, I'll briefly recap: 
  • Autism Speaks has no members of the autism spectrum on the advisory boards or in positions of power to influence their policy.  Now that John Elder Robison has resigned from the science and treatment advisory boards, they are reemphasizing this point as Gadfly predicted they would.
  • Autism Speaks primarily funds scientific research and only spends 4% of their budget on "community services" (whatever this nebulous term means)
  • Autism speaks engages in fund raising using offensive rhetoric. 
  • Autism speaks somehow(I don't understand how) takes money away from communities with their fund raising drives that could go to other things that ASAN regards as more useful than the stuff that Autism Speaks already spends money on.
I've previously discussed the issue that Autism Speaks' supporters are primarily parents who are looking for help for their minor children and parents make decisions for their children and the fact that the 96% of funding on scientific research is a goal consistent with Autism Speaks' stated philosophy and that of their predecessor organizations, Cure Autism Now and the National Alliance of Autism Research.  I'd like to address some more specific points in this post.

ASAN implies that Autism Speaks holds a gun to people and forces them to give them money. and if they stopped doing this, then the communities would have more money for these vague services and objectives and Autism Speaks would have less money that is not being usefully spent.  I don't understand this as Autism speaks is not the government and does not have the power to tax people.  Their donations are only done on a voluntary basis.  No one in these communities who feels money is being taken away from them has to give AS a dime. 

ASAN has invoked their fellow ND, John Elder Robison's name in this protest letter.  Interestingly enough John Robison has chastised me for what he called my unrelenting negativity and not proposing positive solutions to help persons with autism and their families.  Isn't ASAN now doing the same thing Robison accused me of and isn't it ironic they are invoking his name in this letter? 

If 100% of Autism Speaks capital (aside from administrative costs) should be spent on "community services", then what exactly are these services, how should they be funded and how can ASAN (or anyone else who wants them) make their case to the public that they should be funded and has ASAN adequately done this?  I believe the answer is no.  They have claimed (at least at one time) that autism wouldn't even be a disability if it were adequately accommodated.  That if these accommodations were provided for, autism would go from being a disability to a mere "difference".  Yet they have been thoroughly vague (at least in my opinion) as to how this can be accomplished.  How the services they want to spend money would do this and why we would have no need for scientific research to find treatments or a cure. 

ASAN has every right to conduct walks and fundraisers to help raise money for these community services  In this country where we have the free enterprise system, there is no reason they could not raise the millions that Autism speaks has if they could show compelling evidence that these were more beneficial. 
Other than their internship with Freddie Mac program, I don't see any evidence they have ever done this.  They only want to tear down Autism Speaks and people who want a cure for autism rather than offering their own constructive solutions and raising the needed capital and stating how autistic people can be helped. 

They have succeeded to a large degree of the government hearing their voices.  To date, they have four seats on the IACC as compared to the anti-vax movement's one seat and the zero seats held by pro-cure autistics since the IACC's inception.  However, the IACC is largely window dressing and, for this reason, they  haven't been able to get much accomplished by serving there. 

So far they have only seemed to want to take over Autism Speaks and their hard earned capital by infiltration.  They have succeeded to a degree by getting Robison in their organization and the nearly half million dollar grant acquired by Laurent Mottron and company.  The likely reason for this is due to their own ineptitude in acquiring this capital themselves.  Another reason is that most of the people who donate money are parents of children who want a cure for their children and don't ascribe to ASAN's POV.  There aren't enough people with sufficient funds who would donate money to ASAN so they could accomplish these lofty goals. 

In the same vein of Robison's words, I suggest instead of trying to tear down people they don't like that ASAN engage in constructive solutions such as being more specific about how autistic people can be helped, how they can be accommodated and how these accommodations could eliminate any need for biomedical research or a cure.  They could do fundraising walks, give benefits and raise the capital in the same manner that other charities do.  I won't hold my breath though. 

Sunday, November 17, 2013

The Mu Rhythm Bluff is now available in paperback

In case anyone's interested, my novel, The Mu Rhythm Bluff , is now available in paperback as well as in kindle ebook form. 

When I first self-published it over 8 months ago I was unaware that you could do a paperback version easily without greater capital requirements than are required to publish an ebook on KDP. 

 There were some people who told me they wanted to read the book, but did not have a kindle or possibly the inclination to download and use the app that Amazon offers for free. 

I wish I'd been better informed about my options previously, but I guess it's better late than never in case anyone prefers the physical version over the ebook version. 

I doubt this will do much to increase my sales.  I've only sold 42 copies of the Kindle version so far in 8 months and usually for an unknown author people will buy the Kindle rather than paperback because it is less expensive.  If you do want to buy the paperback version rather than the ebook version it will cost about seven dollars more. 

However, now anyone who wants to buy a physical version of my book has the option of doing so. 

Thursday, November 14, 2013

An idea for Autism Speaks and Neurodiversity

Suzanne Wright’s very recent op-ed piece and John Robison’s resultant resignation from the Autism Speaks advisory boards he served on for more than three years have gained a lot of traction on the blogosphere as well as Robison’s FB page as of late.

Ms. Wright has a very severely autistic grandson for whom she wishes a cure or a treatment which can help mitigate the hardships he and her daughter have to endure. She wrote a piece on this subject, possibly with the intent of helping to fund raise, which may have had less than tempered rhetoric.

Predictably, the neurodiversity movement (and possibly other persons with autism and/or their relatives as well) took umbrage to her essay.

John Robison, as I mentioned before, tendered his resignation and ended his affiliation with the highest profile of autism funding, research and advocacy organization because of this essay.

The neurodiversity movement, including Robison, has been critical of the advertising techniques that AS has used for years. They claim that these are intended to evoke pity and show a lack of respect for autistic people.

Practically since autism speaks’ inception, a variety of persons, mostly affiliated with the neurodiversity movement, has questioned why there are no autistics on the board or in executive positions with autism speaks. This probably contributed to Robison’s subsequent appointment to the organization. After this, there was little commentary or criticism of autism speaks exclusion of persons on the spectrum in positions of power or policy making in their organization.

All bets are on whether or not Robison’s resignation and subsequent vacancy of an autistic representative of AS does not elicit the same criticism and outrage that it did prior to Robison’s affiliation with AS. Also bets are on as to whether or not the ND’s will neglect to acknowledge or conveniently forget Kerry Magro’s involvement with the organization they find so odious.

Roger Kulp, one of the frequent commenters on my blog, has expressed a desire to fill the vacancy that Robison created. It is quite clear from what I have read of his life story, he has been far more impacted by his ASD than Robison has by his. Though I believe Roger may be a valuable voice, I’m not too keen on non-scientists serving on scientific advisory boards. Perhaps Roger could be a useful asset to autism speaks without serving in the same capacity as Robison did; I’ll address that issue later in this post.

John Robison has criticized me for what he believes is my unrelenting criticism of him when he’s expressed positions or done actions which I disagree with. He has stated that instead of being negative and criticize him (or others) I should offer my own positive or constructive solutions. This has not been easy for me, as I believe there are no quick answers or easy fixes for the problems autism causes. However, maybe he has a point. In this post I’ll suggest what I believe may be something constructive that I think would address the issues that Robison and neurodiversity has brought up as well as the issue from Autism Speaks’ point of view of how they can effectively advertise fund raising without perceived dissing of autistic individuals who may not like having someone state that are like lost children or that they are defective or their lives are abysmal, etc.

I suggest that autism speaks recruit volunteers from the higher end of the spectrum such as Roger, myself and others who would discuss the problems autism has caused them in their life. I could talk about my fine motor problems, ornithophobia, getting fired from jobs, lack of social relationships and the inability to concentrate and get things done during the day and my loud voice and the fact my self-esteem was affected by having been in special education for eight years. Roger could publicly speak about his experiences of seizure disorders, elopement, etc. This could help with fund raising without causing offense as we would be speaking for ourselves and not for all the autistic people that Suzanne Wright’s detractors have perceived that she has painted with a broad brush. This would help to generate much needed revenue into the organization to help find the causes of autism and a cure.

These, of course, would have to be voluntary unpaid spokespersons as it could be construed as a conflict of interest if autism speaks offered any financial incentives for autistics to speak.

Another less obvious point in favor of this plan would be that AS would be living up to it’s name and it would be actually autistics who are speaking.

One problem with this approach might be that if people on the severe end of the spectrum who could not communicate effectively were not included this would diminish the credibility of the spokespersons. Of course, AS could emphasize that if autism impacts people this mildly afflicted think of what it is like for severe persons. They could then show footage of more severely afflicted persons without any commentary and let the images speak for themselves. This would address the problems ND has had with commentary like Allison Singer’s about driving herself and her child off a bridge. Of course, they could also have spokespeople such as Dov Shestack who would not be speaking with vocalizations but using a communicator to get his point across.

I believe this addresses the problems of autism speaks’ fundraising techniques, their lack of inclusion of actual autistic people in the process, and Robison’s commentary that I don’t offer constructive solutions.

I myself have so many personal issues with autism speaks, such as their funding of Mottron, Alex Plank and the insurance mandates and their autism in the workplace program which just shows autistics working for other employers and not autism speaks themselves that I would probably have to pass on this even if someone from AS happened to read this blog post and thought this was a good idea. But I know Roger wants to be involved with autism speaks in some capacity whether or not he’s actually interested in doing what I’ve suggested. There may be others on the spectrum who might be interested in this.

One issue, I’ll concede that this does not address is the ND movement’s desire to hijack the capital of AS and use it for their own purposes, such as ASAN complaining that only 4% of funding of autism speaks goes for service-related issues rather than scientific research. However, I feel if they want funding to serve their needs they should form their own organizations and solicit funding themselves. They are free not to donate to autism speaks or any other group they don’t believe goes along with their cause.

If anyone does not approve of my idea and has a better one, then I guess they can pursue it or blog about it.

Wednesday, November 13, 2013

John Robison resigns from autism speaks and invokes Harold Doherty's "royal we"

In the occasionally some news is good news department, Gadfly is happy to report that neurodiversity proponent John Elder Robison has tendered his resignation from the scientific advisory board of autism speaks.  It was in response to this op-ed piece that autism speaks founder's wife, Suzanne Wright wrote.  Even though Ms. Wright made the fallacious statement that three million children had autism and ignored the adults such as myself, she did make some good points about the angst that family members of autistic children go through.

Robison accepted a position on Autism Speaks' scientific advisory board apparently believing in the old saw that it's more effective to piss inside the tent than outside of it.  Much to his disappointment, autism speaks did not do a 360 degree turnaround and become a neurodiversity oriented organization or at least an organization that would totally cater to his point of view. 

In response, he wrote a letter of resignation to AS president Liz Fields.  He wrote:
I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

Renowned blogger Harold Doherty first wrote of the tendency for extremely high functioning persons on the spectrum to speak for all autistics on planet earth.  He referred to this as "the royal we". What right does Robison have to speak for 100% of us.  He doesn't speak for me and I suspect at least some others on the spectrum, so what right does Robison have to use the royal we.

Robison speaks of perceived needs: 

Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful.

Robison should have realized that autism speaks was primarily designed to be a funder of scientific research to study the biology of autism in the hopes of finding treatments and even possibly the cure that he opposes.  It was never their intention to engage in mass funding of community services.  In fact, Cure Autism Now, one of the organizations that merged with the National Alliance for Autism Research to form autism speaks, had as its bylaws that they would only fund medical research.  Robison accepted the position on the scientific advisory committee not something meant to fund community services, even if it was his intention to turn this around.

Robison continues to go on, implying that the majority of adults oppose autism speaks' goal of curation and also how there are no autistic voices in autism speaks and the organization is only for parents. 

Yes, autism speaks was formed by parents who make decisions on treatments for their children.  That is a fact of life.  I am not opposed to having actual persons with autism do some sort of work within autism speaks.  I'm gratified they have Kerry Magro in their employ.

I'm not in favor of having someone who dropped out of the tenth grade serve on a science advisory board.  I'm not in favor of someone claiming to be on the autism spectrum yet who states that he does not have a disability serving on a board, claiming they are a stakeholder, when in fact they have no true dog in the fight. I don't understand how Robison's psychologist friend could have diagnosed him in good conscience when he has stated he has no disability.  I'm not in favor of having neurodiversity proponents serve in an organization whose stated philosophy is that autism is a disease that needs a cure. 

I'm glad Robison is no longer affiliated with autism speaks.  I realize it does not change a whole lot, but at least it has positive symbolic overtones. 

I hope the next step would be for Alex Plank and Robison junior to no longer accept funding from AS for autism talk TV or hopefully AS will have the good common sense to terminate funding for that endeavor. 

The government has also stated that they wish to cure autism vis a vis the combating autism act.  I guess they have not written an op ed piece that offends Robison enough so that he'll resign from the IACC and from the NIMH research panel which reviews research.  I wish he'd exit those posts also but I guess I shouldn't get my hopes up too high.