One of my major complaints about the Neurodiversity movement is the tendency of some high profile autistic media personalities to speak on behalf of all autistic persons, including my son who has limited understanding of language, and limited ability to communicate. The "ND" autistic media stars tend to be anti-cure, anti-treatment with respect to autism. They do not like people discussing any of the negative realities of autism, and don't like autism to be associated in any way with intellectual disability. But not all autistic persons share the ND views. Jonathan Mitchell is an autistic blogger whose views differ from the ND club and encourages others to say NO to Neurodiversity in NEURODIVERSITY: JUST SAY NO on his blog site Jonathan Mitchell. I have extracted some of Mr. Mitchell's comments but I encourage people to visit his site and read it in its entirety:
A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".
Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.
I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.
Is this a viable philosophy that will help autistics and their families? Is there a consensus for this philosophy among most autistic persons? Are the people who espouse this philosophy typical of autistic people in general? I would like to address these questions in this journal entry.
...
I hope that if any person touched by autism happens to read this and someone from the neurodiverse crowd gives them a homily trying to convince them of their way of thinking that they will, in the words of Nancy Reagan, just say no.
autism
Jonathan Mitchell says, "The only reason (according to ND) that genetic research is done on autism is the intent of deliberately finding a way of aborting autistic fetuses. Of course it would never occur to them that someone might want to find a way to delete or insert certain genes to avoid the effects of a mutation that would cause the child to have grave harm throughout their life."
ReplyDeleteMr. Mitchell is out of touch with biomedical research. In fact, gene therapy has become something like the Holy Grail and doesn't seem likely to become a mainstream treatment for any disease in the foreseeable future. In one trial, parents had their children rescued from fatal congenital immunodeficiency just to watch them develop leukemia due to the gene therapy (Nathwani et al., A review of gene therapy for haematological disorders, 2005).
So, instead of relying on science fiction, Mr. Mitchell would better say in plain English whether he would support selective abortion of autistic fetuses.
No, Maya, I would not personally support selective abortion of autistic tissues, though if abortion is legal as a form of birth control, then i could not say it is okay for that and not for other things so i could not condone outlawing such a thing, though I would not personally favor it myself.
ReplyDeleteThere is no prenatal test at present that can detect autism in utero so you yourself are out of touch with biomedical research.
Though insertion or deletion of genes to prevent someone from becoming disabled and having a life like mine or mr. Doherty's son might not be available in the foreseeable future, no reason it might someday be a reality, and I sincerely hope that someday this can happen.
You also miss the point I was trying to make in my article that Neurodiversity proponents are claiming that all research in autism genetics is done with the deliberate intent of trying to find a way to abort autistic fetuses which is so patently ludicrious it should not even have to be commented upon.
Hi Jonathan,
ReplyDeleteThank you for addressing questions to your essay here. I have a couple.
1) "A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing." - Who are these high functioning autistics who make this claim of a consensus?
2) "Of course it would never occur to them that someone might want to find a way to delete or insert certain genes to avoid the effects of a mutation that would cause the child to have grave harm throughout their life." - A) If this were the reality, why is it not now being done with Downs Syndrome? B) What leads you to believe we would not see the 85%-95% abortion rate we are seeing with DS once a prenatal autism test is developed?
hi jypsy you can go to usenet group, alt.support.autism and you will see someone named antonia has claimed their point of view is the usual autism point of view. someone named luramo who called me a nazi said that my position was the NT position. Others have said "who would want a cure" You can go to autistics.org where a lot of the neurodiversity crowd hangs out and they claim they are "the real voice of autism" which to me implies that they believe in this consensus.
ReplyDeleteDown's syndrome involves the entire chromosome so it is able to be detected in utero. Autism is probably a wastebasket term for many different types of developmental disabilities which involve the interaction of many genes together, so comparing what can be technically done with down's fetuses with what could be done with an autism fetus given the current state of the art is not an apt comparison.
Thank you. I went to the group but searching "antonia" provided no useful leads. Could you, perhaps, give me the date and/or subject line of the posts.
ReplyDeleteI know many of the people involved with autistics.org and can quite confidently state that none of them would make the claim that there is any consensus among autistics about the issue of "cure", or anything else. Their claim to be "the real voice of autism" does not imply consensus, it implies that, unlike autism organizations who claim to speak for autistics, autistics.org is an organization made up of autistics and so, by that very fact, and in contrast to groups like "Autism Speaks", their voices are the real voice of autism.
I agree that autism(s) likely involve many genes, though perhaps not interacting together. Given that, isn't it more likely that a fetus would be aborted than it would have multiple genes tinkered with in utero?
Jypsy, you are free to interpret autistics.org any way you want. It seems there is no question they are claiming to speak for all autistics. you can search for posts in the usenet news group under my email address jmitch955@aol.com to find all the abuse i had to take in that group more easily if you want. I am sure you will dispute anything I say, i know nothing will convince you of my position so i won't even try. Other examples i forgot to mention of "I speak for all autistics phenomenon" are dawn-prince huges in her book song of gorilla nation. John Robison in "look me in the eye". These are two people who i think were not even diagnosed until well into adulthood. Another example of this is John Michael Carley of GRASP who seems to want to speak for me also based on a radio show he once did. I don't know whether genetics research in autism will ever lead to abortions or not but even assuming that were the case, I would not want to give it up for that reason if there was any possibility at all that it could lead to tinkering with the genes so someone would be a live non-aborted human being who would not have to live this what I consider this horrible disability and could have a better life and childhood than i have. I don't expect you to understand any of this or sway you to my position but that is my take on it.
ReplyDeleteJonathan,
ReplyDeleteI did not ask to see the abuse you have taken, I asked "Who are these high functioning autistics who make this claim of a consensus?" (currently, I am slogging through the 581 hits there for "consensus", ever so slowly on my dialup connection, and not finding it yet)
I did not ask for a list of autistics who claim to speak for all autistics but thank you for that anyway, can you supply quotes to back your claims?
I also am not looking to be convinced of your position, I merely asked you to put names on those in your opening line.
You stated "These are two people who i think were not even diagnosed until well into adulthood." What is your point? I was not (properly) diagnosed until adulthood, because Asperger's was not in the DSM until I was an adult. Why is that relevant? My son was not diagnosed with Asperger's until he was 9. He too may well have been diagnosed earlier had Aspergers been in the DSM earlier. Is his diagnosis more valid than mine?
You seem to be making a lot of assumptions about my beliefs based on things that I have not stated. Please don't attribute the thoughts, words or beliefs of anyone but me to me. I'm asking honest questions and looking for answers to them, not others. I am not telling you how you will react or what you will or won't understand so please give me the same courtesy.
"They do not like people discussing any of the negative realities of autism, and don't like autism to be associated in any way with intellectual disability."
ReplyDeleteI can certainly think of neurodiversity proponents who fit either or both of those, but I think it's just as innaccurate and unacceptable to pretend they represent all neurodiversity proponents as it is to claim all autistics are pro-neurodiversity.
If you search 'silentmiaow' on youtube, you will find several videos by an autistic pro-neurodiversity woman, including one called On Being Considered Retarded in which she emphatically declares that she does not want people treating her like 'you're OK because you're not retarded', partly because by some definitions she is, and partly because many people she cares about fit the definition of retarded much better than she does. She is also a good example of someone who is perfectly willing to discuss negative realities of autism, such as her extreme difficulty doing basic activities important for living independently that she illustrates in a video Boiling Water the Easy Way ('easy' is used ironically).
Regarding genetic research, I think many scientists do intend to find genetic or biological treatments (something I don't approve for autism, by the way) but in the vast majority of cases either the sole way that knowing the gene contributes to treatment or prevention is by prenatal detection and abortion, or at the very least prenatal detection is available long before any biologic or genetic treatment. Knowing the genetic cause doesn't necessarily translate into any understanding of how that allele results in that phenotype. For example, they know the cause of Rett Syndrome - MECP2 mutation (depending on definition, in most or all cases). They know MECP2 is a regulator gene, which controls action of a pile of other genes, but they really have no clue how it works, which genes controlled by MECP2 actually cause the Rett phenotype, or how they work. (Incidentally, MECP2 also results in a number of other conditions, causing various mixes of autistic behavior, seizures, movement abnormalities, reduced growth, developmental delays and loss of skills, along with other things. The phenotypes of MECP2 mutation can range from a slight hand tremor to a severe fatal degenerative neurological condition that kills in infancy, depending on the mutation and the person's sex chromosomes and probably other factors as well.)