Tuesday, October 11, 2016

Autism Speaks' October Surprise: They no longer want a cure?

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:

 We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;

Anti-cure Autism Speaks board member Stephen Shore announced this today on his FB page, linking to autism speaks' website showing their new statement and is apparently pleased that he (and others with influence) got their way.

In the days before Autism Speaks, I was a supporter of Cure Autism Now and participated in some of their walks and donated money to them in the days when I was working and had a bit more extra money.  In 2005, the National Alliance for Autism Research and Cure Autism Now merged to form Autism Speaks.  In the early days of Autism Speaks, I signed paperwork donating my brain to their Autism tissue program, not knowing what their organization would eventually become.

In 2008, they donated a nearly half a million dollar grant to Laurent Mottron who not only believes that the notion of curing autism is nonsensical  but also believes that autism is not a disorder or a deficit or that there is anything wrong with the brains of those on the autism spectrum, but that autism is merely a "difference"  Some years ago I wrote a blog post inquiring why autism speaks would donate this kind of money to a man whose goals and statements were so diametrically opposed to their own and what they advertised to solicit donations on their walks and other places.  Laurent Mottron also had autistic autism researcher Michelle Dawson on his team who stated that Autism Speaks was out to deliberately harm autistic people in a post in which she stated that AS ideally wished a short future for those on the spectrum and linked to a piece that Suzanne Wright had written stating that she wanted to eradicate autism.

For years, autism speaks had received criticism from various so-called autism advocates for not having any autistic people on their board of directors or in positions of power.  Many individuals, including Steve Silberman many years later, made the hyperbolic comparison of  the NAACP being run by whites and not allowing any black people to make managerial decisions in the organization.

Autism Speaks, not being immune to its many detractors, actively tried to recruit various high profile individuals at the very mildest end of the spectrum.  This included Stephen Shore, a very high profile autistic and prolific conference presenter with a doctorate in special education who worked with various children on the spectrum.  Steve Shore was opposed to a cure and the notion of autism being a disordered rather than different way of being, but this did not matter to AS.  They tried to recruit him for either board of directors or some other position.  He turned them down, believing their goals in autism were incompatible with his.

John Robison, who wrote a commercially successful memoir about having Asperger's syndrome, was also approached and asked to serve on their scientific advisory board, along with parents and scientists who all had doctorate degrees, despite that the fact that he was a high school dropout with no knowledge of autism science.

Not long after John Robison started serving on the board, they funded the production of short autism related videos, called Autism Talk TV.  The recipients were both Alex Plank and Robison's own son, Jack "Cubby" Robison.  Alex Plank runs the pro-neurodiversity website Wrong Planet.  He's not only stated that most autistics are opposed to a cure, but in the past stated that autism is a good thing.

After these events, I was appalled at Autism Speaks and regretted having donated my brain to them, though to this day I still haven't bothered to revoke my donation.  I no longer supported them in any way and would not donate money to them, even if I had more money to donate to a good autism charity.

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.

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.

But now autism speaks has reached a new low in no longer stating that they want to cure autism.  

I don't know exactly what this means and whether or not they will continue to fund genetic research and neuroscientific research as they did in the past.  They say "better interventions", but I don't know if this means more ABA type things or if it is something like medications, or various types of neuromodulations such as Manuel Casanova's TMS or something like Yuri Danilov's experiments with stimulating the brain.

I realize that a cure will not likely be found in my lifetime.  There is the argument that just because they don't use the word cure does not mean that they won't fund interventions that might help people. and that they won't fund the same scientific research before that could lead to an improvement in the quality of the lives of autistics or even a cure.  They don't have to talk about a cure because it is not something that will happen, at least in the short term.

However, this is a victory for neurodiversity who are in a much better position to speak for themselves than those of us on the more severe end of the spectrum who cannot get married or be college professors unlike Steve Shore and Valerie Paradiz.

Roger Kulp is an individual with more severe autism than these people.  He's very knowledgeable about the science of autism and the few forms of autism such as cerebral folate deficiency that are actually amenable to treatment.  He's expressed a desire to be on the board of directors, but Autism Speaks does not want him on their board.  

Regardless of whether or not a cure is or isn't realistic, that should still be the ultimate goal of any decent autism organization.  They should state that at some point of time they want to end this tragedy and not have to exist anymore.

It's a shame that autism speaks has gone in this direction and was influenced by a few people whose autism spectrum is so mild that it does not matter to them if many of us who do want a cure for ourselves or family members who are suffering.

If anyone reads this post who gives money to autism speaks or has participated in their walks, etc., I urge you to boycott them until they make a public statement stating that they want a cure and put their goal of finding a cure in their mission statement.

Of course there is still the Simons Foundation, funded by multibillionaire James Simons.  They don't have to worry about marketing and promotion to get funding in contrast to Autism speaks.  They fund a lot of the genetic research that neurodiversity detests so much and are likely more immune to political considerations than autism speaks.  If autism speaks funded research can't or won't find a cure, then I hope the Simons foundation's will.

Addendum:  I've just been alerted to the fact by one of my commenters that autism speaks has also omitted the word "prevention" from their mission statement also.  It's possible that this could mean that if for example CRISPR techniques advance to the point where genetic editing could be done so that a person won't develop autism, AS is against that too.  They've bought the phony baloney neurodiversity argument that prevention is a code word for abortion. 


schaferatsprynet said...

New slogan? "Striving for a crutch, not a cure"

Claudia Mazzucco said...

Hi Jonathan, Have you ever considered the possibility that every adult with autism, who is capable of reporting his experience, has already been cured? What kind of cure are you expecting for your condition?

jonathan said...

Claudia, as i told you on facebook, no i have not considered that possibly since it certainly is not true of me. Not true of Temple Grandin, Tom Mckean, Robison, Ne'eman, or Michelle Dawson. I'm not expecting any sort of cure, particularly at my age, however, I'd like it to be a long term goal at some point in time, even if it does not happen in our lifetime, and I don't think autism speaks should have changed its rhetoric just to appease a bunch of neurodiversity rabble rousers.

AutisticSince1957 said...

"Prevention" is absent also

Unknown said...

Are you sure about this? I read on their Autism Genome Project page that Autism Speaks is working with scientists in Beijing. There's a Chinese study going on right now that's trying to see if CRISPR can knock out an autism gene inserted into monkeys.

jonathan said...

@ Gwen Actually, no, all I know is that autism speaks has changed their mission statement so that the words "cure" and "prevention" are no longer included. I've also been told by Steve Shore that Brian Kelly who replaced the Wrights as chairman of the board of directors is more interested in funding service type things than science research. This probably does not mean that they won't continue to fund science that might result in the type of research that you are referring to or that they won't continue to fund other scientific endeavors that neurodiversity proponents might construe as "cure research"

jonathan said...

@Gwen I guess that's a valid point, I'll edit the addendum so that it states that this is just a possibility

Anonymous said...

If anyone doubts these neurodiverse parents and individuals, who spend 24/7 on their blog and social media, do not have any influence regarding promoting the "autism is grand" message here is just one of hundreds of comments off Jessica Wilson's post today. These people are dangerous and twisted.

"Kristy Ranta I think our hats should tip to you, too. You have been an amazing advocate for your girls. And your love of Neurodiversity is spreading like the gospel. I know your inspiration comes from these amazing people...I also know you're pretty flipping inspiring, yourself. Thanks, Jess!"

Anonymous said...

The fact they haven't stopped their autism Mssng project, that they don't have autistic members on their board now, and the passing of wright leads me to think they are doing this for the sake of achieving their actual goal rather than some moral or self gratifying act. Their "I am autism" video caused a huge blow to themselves, a lot of their decisions in their past were only disruptive to their own objectives. Susan Wright was only doing it for her own ego I suspect without regard to the end.
This paper sorta explains what I mean.
The above is my best case scenario, that they do all this as a means to an end, they no longer are in fantasy ideology land and this is all very good news.
Worst case scenario is they have gone full neurodiversity and their research is the cover all along.
The rest of the world will still continue research, there after all is nothing resembling ari Neeman or plank in India or China. Autism speaks funded or started projects but didn't do them themselves anyway. The only way neurodiversity can truly win is by halting all research and converting everyone to their cause, and they may know it! They will continue on only slowing things down till the bitter end. They are the fantasy ideology, otherwise they would be doing things with concern for results and would not be so ridiculous.
Neurodiversity is a western movement at most for now.

jonathan said...

@Anonymous 7:07. They have not stopped their mssng project yet, that does not mean they won't at some point in time. They have Steve Shore and Valerie Paradiz as their autistic board members. Suzanne Wright did not do this for her ego, I believe she really wanted to something to help her grandson who is far more severely autistic than anyone who can read or comment on this blog.

I don't know what this means for the future, but it does not look good, though 'cure' is just an abstract concept not likely to occur in our lifetime, but it is still a harsh thing to me that they have changed their goals.

Neurodiversity is apparently not just a western phenomena. I've been told by a couple of my readers in the soviet union that there is a neurodiversity movement there and these people translated my article "neurodiversity just say no" in Russian

Unknown said...

I've communicated with Stephen Shore in a real life (he has been in Moscow). He doesn't look like a neurodiversity fanatic and has rather pragmatic look at questions of this kind. Although he doesn't look at ASD as at solely disorder and thinks that there are strong sides of this condition but also tells that we should be realistic about challenges. And doesn't reject ABA and even an idea of a cure for autism (especially for Kanner-like autism).

Yes, there are some activists representing orthodox neurodiversity in Russia. But it is not mainstream and there is a pluralism of opinions about a cure in Russian communities of autistics.

P.S. I think this change in Autism Speaks mission is just a political stuff. BTW, Western world is irrationally afraid of eugenics and genetic engineering of human in general. And e.g. China has no such kind of prejudices.

Anonymous said...

Awwww crap, I honestly can't believe pseudoscience is this accepted now. It's frightening, it's so disturbing knowing we are right but are ignored. They don't do this shit with other diseases and even if they do, since when do they win this much?

Jonathan, why do you think neurodiversity exists in the first place?

jonathan said...

I have communicated with steve in real life many times also. I like him personally but have many disagreements with him about autism. He has told me he is not in favor of a cure because it would tamper with the gene pool He is not keen on ABA but is in favor of certain types of interventions, something called the miller method.

He does not have any really good solutions for those on the spectrum in my opinion. He seems to believe that autism is an alternative way of being. He has lived a normal life compared to me and most other autistics. He's never been a special ed student and he was able to get married and make a good living. In some ways, I think he's oblivious to the hardships of people more severely on the spectrum

jonathan said...

There's a mad pride movement with schizophrenia i don't know if they are as successful as neurodiversity has been. They do it with other disabilities also.

The neurodiversity movement appears to have grown out of the more general disabilities movement that was very popular in the UK which preaches the social model of disability rather than the medical model of disability in that wheel chair users would not be disabled with ramps and other accommodations and people are disabled by lack of accommodations and acceptance, etc. as opposed to the medical model of disability which states people are disabled because they have a medical condition. Neurodiversity basically plagarized this and modeled all of their thoughts on this more general idea, the "nothing about us without us" expression was used long before neurodiversity existed and for many other disabilities other than autism. It also grew out of the anti-psychiatry movement in the seventies.

It has appeal to people who want to feel about better themselves since autism is such a hopeless condition. Also picked up by people with a few quirks because autism has become so well known.

Anonymous said...

But why have they been more successful if not the most successful in history compared to other quack movements?

Anonymous said...

In case the worst happens, you and your allies have to come up with a plan, really think about what to do. You can't just watch and let things get worse. Really think of how to actually do something instead of getting pushed back and back over and over. What about autism speak outlets in other countries? Are they all satisfied with this? Contact them maybe for example to see how they will be handling it.

Unknown said...

>> He is not keen on ABA
But at least he is not against it and says that it can be beneficial in some cases.

>> He seems to believe that autism is an alternative way of being.
Surely he is. And tells (at least at lectures at Moscow) that ASD can be considered as alternative cognitive style with its own strengths and challenges.

Unknown said...

About neurodiversity movement and social model of disability: I often consider it as expression of so-called bioconservatism. I mean when healthy human body is considered as something sacred (e.g. given by gods or absolutely perfect); usually bioconservators are against eugenics and genetic engineering of human.

About pure medical paradigm of autism and idea of "cure": I think it is too narrow approach. In the case of ASD we have actually a lot of different conditions with different ethiology. Some forms of ASD (mainly AS/HFA) can have some advantages (e.g. elevated number of autistics among gifted children and savants, higher AQ scores among mathematicians and engineers, autistic hyperfocus etc.). And some problems with ASD are mainly cultural-based (some sensory overloads, ToM issues, nonverbal communication).

And I think that questions of a cure of autism are strongly connected to the intelligence augmentation, eugenics and genetic engineering of human. And to make these things maximally beneficial we need to throw out normophilia and cultural prejudices. May be manageable ASD can be ok, e.g.
1) AS/HFA - transformed to cast of engineers and scientists with very high IQ, hyperfocus, slow ToM and empathy (but not too bad). I think that fraction of such people can be as high as 20-30%.
2) Classic autism - increased percentage of savants that can work as organic computers and be useful. If NT depend on power plants, production of ammonia, road builders why can't some minority depend on caregivers?

May be if we apply idea of a "cure" wider we can develop some "neurotypes" that will be better than both NTs and autistics. And actually "neurodiverse" are working against such extension and forget that majority of people in developed countries supports eugenics.

P.S. I have diagnosed AS/HFA and currently don't want a cure for personally myself too much. But I understand that ASD (and even modern Homo Sapiens in general) in modern form is unacceptable and should be modified by some medical/technical things.
P.P.S. In a discussion of with orthodox neurodiverse people it is reasonable to ask two questions :) (inspired by some Russian phone pranks and your texts):
1) What is you job?
2) All of you are frauds! (in the case of too doubtful self-diagnoses)

jonathan said...

anonymous, i really don't have the answer to all of your questions.

Anonymous said...

You are writing a book about neurodiversity no? Maybe it can help counteract the public opinions from these recent events.

Anonymous said...

Part of it is probably people grasping for new excuses to get away with treating other people badly now that some of their previous excuses don't get accepted as much.

"And some problems with ASD are mainly cultural-based (some sensory overloads, ToM issues, nonverbal communication)."

Thoeyr of Mind isn't "cultural." If you mean X but do and say Y instead of X, then how is another person supposed to know that you mean X instead of Y? A person can use stereotypes of people like you to *guess* that you mean X or Y or Z, can hear and see what you do and say to conclude that you mean Y, etc.

A person *cannot* bypass your words and actions to directly read your brain instead. *No one* can do this, *no matter which culture* he or she is from.

Anonymous said...

"1) AS/HFA - transformed to cast of engineers and scientists with very high IQ, hyperfocus, slow ToM and empathy (but not too bad)."

What about the rest of their lives? People like that can still do a lot of damage to other people with that behavior, since engineers and scientists still interact with people (sometimes even within families!). For example, http://www.empowher.com/asperger039s-syndrome/content/aspergers-parents-and-neurotypical-children .

Unknown said...

>> What about the rest of their lives?
a) Some problems with AS/HFA are based on NT-oriented culture (and it can be reviewed), some of them are because of absence of specialized education (can be improved too).
b) Manageable AS/HFA-based neurotype may be not as bad as natural AS/HFA in the aspects of social interaction and sensory issues

About your example with NT children: actually NT parents can damage AS children too due to misunderstanding of another "neurotype". It can be overcome by:
1) Education of parents (both autistic and neurotypical)
2) Another parent or relatives that have required "neurotype"

Joseph said...

I would want to be happy and contented. If a cure could provide that, it could be good. I think life could have been more satisfying with me having been much more intelligent and still with the autism to set me apart with a different way of thinking and seeing things, but also with society accepting and accommodating me.

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