Thursday, June 22, 2017

Will Divisions in the Autism Community ever be resolved

Individuals involved in autism, including parents, professionals, and autistic people themselves have a wide range of opinions on a variety of issues. These include persons who believe that vaccines cause autism, though the evidence for this is lacking. This also includes people who believe in the concept of neurodiversity, though the evidence of this concept as a biological fact or effective way of resolving the problems of autism are also lacking. There are also individuals such as myself who don't agree with either camp and have their own strong opinions about autism. The various sides have been at loggerheads with one another going back to the nineties when the internet had widespread use and diagnoses of autism increased rapidly. There have been nasty insults traded back and forth by all sides. On occasions there have even been death threats such as when one neurodiversity individual threatened to murder as many NTs as he could Likewise researcher Manuel Casanova stated that he'd received death threats from some people who believed vaccines caused autism when he made statements contrary to their beliefs. Temple Grandin's mother, with the exception of her unfortunate statement linking autistics to pedophiles, has stated that she usually stays out of autism debates because of all the political disagreements in the autism world.  Bernard Rimland's widow (forgot her name) has made a similar statement.

Lately, there have been some suggestions that these divisions can and should be resolved for the common good of all concerned. This line of thought is that if we all worked together on common goals then we'd actually be able to do things to help persons on the autism spectrum and their families vis-a-vis, insurance, lobbying legislatures, etc.  John Elder Robison recently wrote a blog post to that effect. This was partially in response to Amy Lutz who expressed concern that JER did not understand that she needed help in finding a residential placement for her son, when he suggested that if his own dog could make a choice that Lutz's son could too.  Ms. Lutz cordially invited John to come to her home and have a dialogue with her son about where he'd want to live, possibly to show to him he might not understand the problems someone with an IQ of 40 might have with that.  I realize at some point when John's busy schedule permits him time and he's in the Pennsylvania area he might accept Amy's invite.  I hope he does.

Though he has not yet accepted her invitation, he did write a conciliatory response to her concern.  This gave her encouragement believing that at some point the autism community could work together for the common good.

In a facebook exchange with Thomas Clements (the autistic buddha) he expressed unhappiness at being attacked by a neurodiversity SJW and asked for my input as well as John Robison's and Steve Silberman and others.  My only comment was that he was now learning what neurodiversity was really about.  This prompted a response from Silberman stating that my comment was an example of all the infighting among those interested in autism and it prevented those afflicted from receiving the help they needed.

Roger Kulp stated that there were no way all the sides could work together because of the great disparity of the groups in their goals.  Also he seemed to blame the psychiatry profession for being too inclusive of too many people to be included under the autism rubric when they wrote later versions of the DSM.  Roger makes what I believe are some valid points as there is a huge difference in functioning and clinical profile between lets say Alex Plank and Amy Lutz's son and Jill Escher's children.

I would like to give my take as an individual and go beyond just the entire group.

I don't believe the divisions in the autism community will ever be resolved nor will I make an effort to do so.

I will never work with neurodiversity people who have called me a nazi or at least implied this.  I will never work with people who have insulted my mother called her a witch and a yapping shrew and have stated that she's a danger to the autism community.  I will never work with people who have implied I might be out to engage in click bait and publicity for my blog after I angrily responded in one thread in another blog when they were ridiculing my celibacy and calling my mother names, I will never work with people who state that persons who want to find treatments and cures for autism are looking for a way to intentionally abort autistic fetuses.  When journalist Erika Hayasaki was writing a profile about me that was eventually published in Newsweek magazine, a bunch of NDs wrote her en masse, urging her not to write about me.  They probably also wrote Newsweek urging them not to publish the article.  I will never work with these people.

There is no way my goals and theirs will ever be reconciled, so I'm not going to try.  I don't believe that doing research on whether or not vaccines cause autism will get any results as this has been done ad nauseum.  I don't believe acceptance and accommodations are going to resolve all the problems of autism.  I don't believe that embracing businesses like specialisterne, SAP, Mindspark, etc. stating that the neurodiversity model will enable autistics to make a living will help.

In a facebook exchange with Amy, when she was enthused with Robison's post and felt that all the factions could work together, I stated I did not agree.  She asked me if I felt she was naive.  I told her I believed she was.  I still believe people who think this way are naive.

I hope that scientific research will be done that helps find treatments and prevention(not abortion) for autism.  However, at the present time, there are no easy answers, and I believe it is naive to think so.

Though John Robison may have had good intentions with his post, I don't believe the various factions will ever work together nor should they attempt to. 


farmwifetwo said...

No. It's not even a cure/vaccine thing. It's a passing for normal / disabled thing. Which is why I will not allow my eldest to call himself autistic or disabled . That is his brother . Also I appreciate that our life on the severe end of the spectrum is much easier than most . We don't have the behavior / sensory overload. Ours is on the mild end which in hindsight should have been a flag for the catatonia.

They can keep pushing online but the schools and professionals know the difference too.

Anonymous said...

So, I recently found your blog and I have to say good stuff. What I do not understand about the ND movement is how they justify the their initial premise. By that I mean they start from the idea that autism is a result of regular genetic variation. That's fine, but that does not mean the result of that variation is a benefit. Other disorders that would fall under reasoning are things like tay-sachs, cystic fibrosis, marfan syndrome, and Huntington's disease. Now, would Silberman argue that since these are a result of the same type of genetic variation which produces autism they are all acceptable condition under the neurodiversity model?

They are all quite debilitating disorders which offer no possible environmental advantage (it has been suggested that cystic fibrosis may grant a resistance to TB when only 1 copy of the gene is passed to the child). Even something similar like sickle cell blood anemia is known to make make a person resistant to malaria when only 1 copy of the gene is present.

Autism is not exactly like these others as the exact cause is pretty much known. The same is not true for autism. But the other genetic disorders are more analogous than left handedness.

Over time the exact cause of autism will become more clear. But if it is the result of genetic and environmental factors where do ND draw the line? Is it only the genetic causes that should be preserved? Or will any identified environmental factor be allowed to roam free?

If removing all the causes of autism (through completely humane methods like fetal gene therapy and environmental cause awareness/prevention)constitutes a genocide to them, then is the elimination of cystic fibrosis equally genocidal? That seems untenable, if you asked someone with CF if they would like to be cured I would imagine either 100% or pretty close says yes.

And due to the severity of those disorders they have a significant influence on who that person is mentally. To the same extent that autism is essential to who that individual is. So I think the comparison to the 3rd Reich and the eugenics movement is very weak. In the purest sense something close to eugenics has been occurring since throughout human and pre-human history, only it was not the conscious action of a species on itself, but rather the natural pressures exerted on the population.
This once again kneecaps the basis for ND. Without a selection pressure on the population then there is less utility in increasing genetic diversity. And with the current and hopefully future ability of humans to control their environment there is less natural selection pressure on the population than there ever has been. So ya in conclusion I don't think ND makes that great of an argument.

Lastly, I just had a question for you Jonathan. You talk about finding a cure, but I just don't know how that would work? If autism is brought about in brain development how do you reverse that? When I think about a cure I picture like antibiotics for a bacterial infection. It's remedial, I just don't know how you could put the cat bag in the bag as it where for those with autism.

jonathan said...

@anonymous, thanks for the kind words. Neurodiversity movement would certainly argue that since cystic fibrosis (at least in its more severe forms) and Huntington's are fatal diseases that they are different than autism, even though autistics on average probably have a lower life expectancy, it does not directly kill as do CF and huntington's, the assertion that autism is a complete natural variation as most in the ND movement claim has no scientific basis as autism has been found in association with pregnancy complications and environmental factors in many cases. They have claimed that autism confers benefits on those who have it, though there is not much evidence for this either, at least in the majority of cases (with the possible exception of Stephen Wiltshire and other savants)

There are various ways (at least theoretically) that autism could be cured or at least prevented such as CRISPR genetic editing. Finding a way to inject the properties of Schwann cells into the central nervous system, neuromodulations such as TMS or the type of work Yuri Danilov does where energy is sent to the brain via the tongue to reorganize it so that it functions better. At this point, however, there is no cure so it is a theoretical question and I admit not likely to be a reality in the foreseeable future, but at some point in time I believe it could be reality when and if we learn more about the etiology of neurologic diseases and better techniques to remediate brain dysfunction are discovered. Again I admit it's a long way off and I don't expect it to happen in my lifetime, particularly at my advanced age, Thanks for the nice comments about my blog.

Jake Crosby said...

"Temple Grandin's mother, with the exception of her unfortunate statement linking autistics to pedophiles, has stated that she usually stays out of autism debates because of all the political disagreements in the autism world"

AutisticSince1957 said...

Our goals and worldview at this point are too far apart to be resolved at the point but there could be individual issues where both sides could work together. You an ND agree about vacccines. I think most people on both sides do not approve of the electric shock treatments going on at the Judge Rotenberg Center. I know the FDA was considering a rule banning it but a year has gone by and nothing has happened. A joint statement by ND opponents and proponents can galvanize all sides of the broken community and more importantly move things along at the FDA. The next statement might be naive given the current national climate but all sides really need to tone it down. Threats, trolling, doxing saying "all ND's" or "all curabee" language, personall attacks are never acceptable. People engaging in the threatining and violent behavoir need to face consequences from the law. I think joint statements from the leading figures on all sides could be helpful. But these joint statements can not be a one off, the need to happen on a semi regular basis and all leading figures need to realize they hold responability and follow through on a regular basis.

I hope you have a nice Fourth Of July that is not too much of a sensory nightmare.

jonathan said...

Thanks for the wishes EK. Yes, I agree with you for the most part. I am opposed to the Judge Rottenberg center and sometime ago, I wrote a post stating that ASAN was doing something good for a change. I still won't work with the people that have been abusive to me even on issues on which we are in agreement. though I hope FDA does something about JRC, but as long as people are crippled by ASD's desperate people will attempt desperate measures, so not sure what can be done. The people who believe vaccines cause autism are never going to be convinced otherwise so I'm not going to try. John Robison is one of the leading proponents of ND though he seems to take a slightly different position on treatment and he is one who has called for unity, but I don't think people will listen to him. I forgot to mention it in my post, but Liz feld who was president of autism speaks also called for unity after Silberman's scathing editorial criticizing autism speaks. So two leaders have already spoken and asked for unity, but I don't believe it's ever gonna happen no matter how many times they repeat it.

Unknown said...

I do not think the anti vaxxers can be convinced either but I hope that growth in thier popularity can be slowed or stopped. There is a quote made famous by the late Israeli General Moshe Dayan "If you want to make peace, you don't talk to your friends. You talk to your enemies.". Tough to do because despite myths we autistics do have feelings and bieng change resistent makes it tougher.