‘Neurodiversity’ in New York Magazine

26 May

The journalist and author Andrew Solomon (author of the truly excellent and personally recommended Noonday Demon) has written a long piece for New York Magazine entitled The New Wave of Autism Rights Activists in which he paints us a picture of the heavily fractured tripod of autism activism.

Its far, far too long for me to summarise but I will try and give a very brief overview of how Solomon sees these three groups:

There are in reality three sides in this debate: those who believe autism is caused by environmental toxins (especially vaccines) and should be cured by addressing those pollutants; those who believe it is genetic and should be addressed through the genome; and the neurodiverse, who believe that it is genetic and should be left alone. These camps are blatantly hostile to one another. Gerald Fischbach, the scientific director of the Simons Foundation, one of the largest private funders of autism research, says, “I’ve never seen an advocacy community as intense and demanding. The mercuries get livid when people talk about genetics. The geneticists get furious when people talk about environmental toxins. And these activists get angry at both.”

That is a fairly accurate picture although not without it faults (ND’s believing autism should be ‘left alone’….not sure about that – and Solomon does qualify that statement later on)

I don’t really want to talk that much about Solomon’s piece. Its very, very good overall in my opinion. What I _do_ want to talk about is my reaction to it and how my slightly changed view of what ‘neurodiversity’ means to me is.

Ever since I had a large public disagreement with certain people last year about how I and other parents on the Autism Hub allegedly advocated (this disagreement led me to ‘outing’ myself as a manic depressive, handing over ownership and control of the Autism Hub and taking time away from blogging for a week or two), I have been thinking off and on about ‘neurodiversity’ as a practical construct.

I will come clean and say that Andrew contacted me for a statement about what I thought about neurodiversity as someone both neurologically different and also parent to someone neurologically different. That I didn’t make it into the final piece is testament to his skills as a journalist and my own growing ambivalence regarding neurodiversity. I started off by saying:

I felt that I had a good handle on the meaning of neurodiversity – to me it was simple: the diversity of neurology or, to lengthen that out to a truly epic state of pedantry, the many differing states of being that could be neurologically encompassed.

and I still do think that. I also said:

…what neurodiversity was, was a concept that could be embraced by people who valued difference and respected those who were different. It didn’t matter to me that those who embraced the concept were parents or professionals or autistic people or blind people or bipolar people or any mixture of the above. The important thing was that here was a group of people who were saying that being different wasn’t bad. That it (whatever ‘it’ happened to be for you) was a state of being worthy of respect in its own right. It is vital to me that my child grows up to think of xyrself as a person who is entitled to respect.

Beyond that, I am unsure what – if any – of the other things associated with neurodiversity apply to me. I am not ‘anti-cure’. I agree with Alex Plank who states in the article:

Alex Plank, who founded the Wrong Planet Website, which has over 19,000 members, says, “Since no cure exists, I don’t have to be opposed or for it. The thing now is to deal with the autistic people who are already on this planet.

What I want to do is raise my child to a point where xe can advocate for xyrself. If there was a cure invented tomorrow I would want xyr to able to ask the question xyrself: ‘Do I want this?’. This is because, as a parent, just as it is not my right to make xyr not autistic, it is neither my right to keep xyr autistic against xyr own wishes. I am a parent first and advocate second. Let me go even further. If a cure was discovered tomorrow I would not advocate against it. I would try and debate its use as something that should be used with extreme caution but I would not advocate against it point blank.

I come from a viewpoint that views a cure for autism as something that should not be necessary, not as something that should not exist.

What I mean by that is that I do not think it should be _necessary_ for someone who was autistic to be made not autistic in order to enjoy their life. I see plenty of autistic people clearly enjoying their lives and who they are. I want to see respect, tolerance and caring to come _first_ – not only after someone has been ‘cured’. This is (to me) at the root of the recent issue involving Alex Barton. One argument is that because Alex is autistic this is only to be expected. I disagree with that totally. I think that Alex was/is worthy of respect whatever his neurology. Its the same reason I don’t really like the heavy NT bashing that goes on at some ASD forums – two wrongs never make a right.

I also come from a belief that science is important. I therefore recognise that we cannot pick and choose what science we like and what we don’t. Science is either valid or it isn’t. So, when a scientist writes a _good_ paper that states MMR doesn’t cause autism I have to (by definition of science) agree with it. Likewise however, if a scientist writes a _good_ paper that states that Facilitated Communication is not valid, I have to accept that also. I do think that some neurodiversity activists are guilty of picking and choosing what science they like and saying its good and vilifying science that they don’t agree with. Which is fine if the criticism is valid. But not if it isn’t.

If a scientist works on a cure for autism should he be stopped? No way. To me, that’s pointless. If science is interested in a subject they’ll do it. Not always in the best interests of humanity I grant you but all the same – the debate about what to do with the results of said science are more practical than simply trying to stop it.

So, I’m not sure if I am ‘ND’ anymore. Or maybe I’ve just re-interpreted what I think being ‘ND’ means for myself. I don’t know.

Edit: Missed a bit

The closing of Andrew Solomon’s piece is a bit of a dichotomy.

Severe autism is a ghastly affliction that should be cured

I’m afraid that I entirely disagree with Andrew there. They key word is ‘should’. To me, the sentence would be more representative of my own personal definition of ‘nd’ if it read:

Is it important to cure ‘severe’ autism or look more carefully at how the rest of society operates around ‘severely’ autistic people?

.

However, it seems as though Andrew was reading my mind when he wrote:

It is unproductive to rail against the incurable; if you can learn to love it, that’s your best chance of happiness. For some people, the love is self-evident; for others, it is acquired through struggle; others cannot do more than pretend to it. Though neurodiversity activists can get in the way of science and sometimes wrap themselves up in self-important, specious arguments, they also light the way to such love—a model of social acceptance and self-acceptance that has the capacity to redeem whole lives.

16 Responses to “‘Neurodiversity’ in New York Magazine”

  1. Ms. Clark May 26, 2008 at 11:24 #

    Kev,
    No one owns the definition of “neurodiversity” so whatever you definition of “ND” is is as good as anyone else’s. That’s my opinion. Since I don’t “own” the definition of “neurodiversity” then I could be wrong. 🙂

    As for Lenny and a few other of the other key antivaccine activists who vilify Kathleen Seidel and myself and others, they were present at a recent IACC meeting where a pharmaceutical cure or treatment for Fragile X syndrome (that might be offered to autistic people without Frag X) was discussed. I mentioned in my public comment that one or more of my friends could possibly end up as part of that research.

    The reason my friend(s) may end up as part of that research is strictly because of my intervention. That is, my friend had no idea that Fragile X was in xyr family until I suggested that xe get tested.

    So, where does that put me? Anti-research? Obviously not.

    Anti-cure? Yes. I am still anti-cure. I don’t think that the people who are enrolling in this study currently are going to be cured of their autistic traits. They may be helped with some cognitive problems, maybe not. They will probably have less anxiety. That’s good.

    I don’t think you can separate the offering of something as a “cure” from the environment that it is offered in. At one point in history, and even now, if you offered some people of African descent a cure for their appearance, so that they would appear Anglo, they’d take it.

    Their lives would be easier, I suppose, in the United States anyway, if they could pass for white. Should we deny them this chance to be “white”? Yes. Should we offer them this chance at a cure for blackness? No. Should we be researching a cure for blackness? No. At least not until the choice is totally value neutral, and if being black is as valued as being white, then why have a cure?

    The other thing is this hatred for people who are too dependent on others. Disabled people are here. We all will become disabled if we live long enough. Why locate the problem in the disabled person and tell them it’s their job to become normal because we hate taking care of them? Some of that hatred gets taken in by the disabled person and they come to hate themselves. It does happen. Not that everything about being disabled is glorious and to be sought after. It’s not a “black and white” choice. Reality dictates that there will always be disabled people. Morality dictates that we be happy to take care of them, not hateful toward them because they are “burdens.” And hateful or disdainful is how a lot of people feel toward autism, even if they won’t admit it.

  2. Plato The Friend May 26, 2008 at 13:10 #

    Is “Neurodiversity” happy to take care of my friend “Socrates” at http://www.the-newrepublic.blogspot.com ? This Debate? It’s just all a bit too academic, when this sort of thing is going on…

  3. Kev May 26, 2008 at 14:43 #

    Not to everyone Plato. Interesting blog you have there though. I’ll defintely be reading.

  4. Joseph May 26, 2008 at 15:19 #

    That is a fairly accurate picture although not without it faults

    I actually thought it was a gross oversimplification, even using the term “neurodiverse” which is meant as a pejorative term as coined by the mercury militia, and making it about environment vs. genetics (which is a common debate, but not what absolutely defines neurodiversity). The author also states that neurodiversity advocates get in the way of science. I have not seen any evidence that this is the case. And in fact, if any group in the autism community is on the side of mainstream science, that would tend to be neurodiversity advocates more than anyone else.

    This kind of article needs to be put in historical perspective. The following is how a 1966 Time Magazine article on Homosexuality concluded:

    “Even in purely nonreligious terms, homosexuality represents a misuse of the sexual faculty and, in the words of one Catholic educator, of “human construction.” It is a pathetic little second-rate substitute for reality, a pitiable flight from life. As such it deserves fairness, compassion, understanding and, when possible, treatment. But it deserves no encouragement, no glamorization, no rationalization, no fake status as minority martyrdom, no sophistry about simple differences in taste—and, above all, no pretense that it is anything but a pernicious sickness.”

  5. jon Mitchell May 26, 2008 at 17:23 #

    If you are saying that a cure is not necessary, then what alternatives can you offer, kev? It seems to me that every neurodiversity proponent, yourself included, just says that something should be done about these problems that autistics have but it should be done without curing or doing research that might lead to a cure or prevention of autism.

    Can you suggest any alternatives to a cure that would allow autistics to function better in society?

    If they were functioning in society, would they not be cured, as my dictionary defines cure as a restoration to normal health? Seems to me many in neurodiversity try to have it both ways

  6. Catherina May 26, 2008 at 17:34 #

    but Jon – what is “normal”. Obviously, what is “normal” is defined by society that sets a “norm” that people have to conform to to be considered of “normal health”.

    “Typical” at least can be defined as a certain area under the peak of the Bell curve that describes the spread of the feature (like IQ or adult body height), but “normal” always needs the “norm” for its existance.

    I always like to discourage the use of the word “normal” because it is so non-descript.

  7. Joseph May 26, 2008 at 17:42 #

    Can you suggest any alternatives to a cure that would allow autistics to function better in society?

    Jon, here’s one idea that doesn’t involve forcing society to change its construction of autism in any major way. Study factors influencing adult outcomes of autistics. I’m sure you agree that some autistics have successful outcomes, regardless of initial “severity.” Why is that? Is it because of better diet, syndrome specifics, and things of that nature? Maybe, but I think there are other types of environmental influence that make a huge difference. Kanner identified at least one.

    Of course, I realize that you’re asking for a cure for 50 year-old adults. Do you think that’s realistic? Besides, and I apologize for making assumptions, but I doubt you have a worse personal situation than most people in the world, or even most autistics who believe in self-acceptance.

  8. Ms. Clark May 26, 2008 at 19:34 #

    If the world in general considered Jonathan as acceptable, even if they didn’t think he was normal, then he’d be happy (if I understand what his major complaints are from private correspondence with him). His complaints are located in the way other people treat him, so there are two ways to “cure” him; 1) to get other people to appreciate his differences (which aren’t shocking or horrific, from what I understand), and 2) to make him more acceptable via rewiring his brain (sort of a Flowers for Algernon scenario).

    Which is easier to do? Neither would be easy. But I think it’s easier to advocate for people to open up their minds and become more flexible in what they consider acceptable (opening up their minds to become more flexible about what they consider acceptable IS neurodiversity).
    But between those two things the only ethical thing to do is to advocate for neurodiversity. Since even if they had a “cure” for 50 year olds, many wouldn’t want it, they’d still be here being abused because they are different, some might not survive the “side effects” (see: Flowers for Algernon), and many couldn’t people couldn’t afford it. The assumption is that it’s going to be cheap, readily available to poor autistic people and have no side effects (like suicide after the “cured” person realizes that they are still unemployable and undesirable after becoming normal, because they really aren’t normal after all but a simulacrum without a normal past that normal people all have).

  9. jon Mitchell May 26, 2008 at 21:20 #

    catherina: maybe normal is a poor choice of words, I don’t know, i was just going by a dictionary definition. I really don’t understand why “typical” is any different than normal, it seems to mean the same thing to me, and I don’t know why the former is less offensive than the latter.

    Joseph: I never said that a cure for a 50 year old was realistic. Yes, there are some successful adult outcomes (successful being defined in my book by being able to have a reasonably good job, getting married, not having to worry about being fired, etc.), those outcomes have eluded me and the vast majority of those on the spectrum. I don’t think anyone knows why some people have better outcomes than others, it could be due to physiologic differences in the ability of some parts of the brain to regenerate on its own when a child is young. I don’t believe there is any treatment anything in the environment that helps this. Yet, you yourself want to seem to ignore these problems and make a sweeping claim, if i am remembering one of the natural variation posts correctly that something like 76% of autistics will be able to work as adults. There is no factual basis for this figure, you just conjured it out of thin air. And as I have had to recently retire from paid work because the situation was so hard for me, posts like yours hit home and I can assure you that I am not in the bottom 24% in functioning level. I don’t feel it is relevant who has it worse than me in the world. Though I dont know you personally and I never will I believe that you, being married, being a software engineer (or some sort of IT occupation) being capable of supporting a child though you claim to have autism, your situation certainly does not hold a candle to mine.

    Ms. Clark: No, I don’t believe that advocating for better treatment for autism provides any more of a realistic remedy than research for a cure does. Certainly the latter may have some promise for future generations, even if not for people born now. The former is a pipe dream IMHO which will never be realized. You have not met me personally so you can’t really know the magnitude of my problems and how it has affected me. Sorry if these responses don’t address every point, but sort of hard to respond to three people at once since my viewpoints will generate controversy in forums such as these.

  10. Catherina May 26, 2008 at 21:48 #

    Jon,

    not offensive, but it is helpful to use precise language when you are making a point. ‘Normal’ is never precise.

    In the case of a schoolmate of my daughter, it was considered “abnormal” (and hence intolerable) that he needed to withdraw towards the end of the day, usually into a corner or under a table (we are talking about a 6 year old in a first grade class of 26 with one teacher). He was successfully mainstreamed in said classroom, when the new teacher who took over decided that it was entirely “normal” for a child in primary school to be overwhelmed by all that was going on in that classroom and to withdraw into a “quiet corner” that had some cushions to block the view of the rest of the class. A minor adjustment that essentially involved a new definition of “normal”.

  11. Ms. Clark May 26, 2008 at 21:50 #

    Jonathan, Neither have you met me and neither have you looked at my job history, my relationship history or my emotional scars from being treated badly specifically related to being on the autism spectrum. You assume that Joseph is less impaired than you, but perhaps he met the right people at the right time and was able to work around his problems. Maybe you ended up in a harsher environment that made your problems stand out more.

    Let’s not forget that if you had been born normal and married, there’s about a 50% or greater chance that you’d have ended up divorced. It’s not like being “normal” is a ticket to job happiness, marital happiness, good looks and outstanding luck. Some homeless people are “typical”people. Lots of people who despise their bosses and their jobs are typical. I’d guess that most drug dealers and criminals are “typical” people neurologically.

    There’s a belief that all would be perfect if only one was normal. It doesn’t work that way. And let me remind you that you are far more able and typical than my disabled child is. My disabled child is not able to get a job, period, and is unlikely to get married. But my disabled child isn’t whining about wanting to be normal. Neither does my “normal” child have a perfect life.

  12. Joseph May 26, 2008 at 22:01 #

    Yet, you yourself want to seem to ignore these problems and make a sweeping claim, if i am remembering one of the natural variation posts correctly that something like 76% of autistics will be able to work as adults. There is no factual basis for this figure, you just conjured it out of thin air.

    It was 70%, and I didn’t make a sweeping claim. It was a cautious estimate and I clearly stated I was making assumptions and using other figures as artifacts. I came to this conclusion given the changes that are observed in the percentage of autistics thought to have mental retardation in California. Current adult findings are obviously not applicable to children diagnosed now. I think this is a simple fact that people in the autism community should be aware of. It doesn’t mean that autistics have changed, but the group of autistics getting labeled has changed.

    It’s off-topic, though. Plus I’m not going to get into a “who’s more autistic” contest with you. I don’t see the point, nor do I share the belief that certain measures of success make people less autistic.

  13. Navi May 27, 2008 at 06:26 #

    my husband’s step brother w downs honestly functions in society. He still needs some supports and lives with his parents, but he holds down a job. Since he ‘functions’ is he cured? Of course not. Numerous autistic people function in society but they are still autistic. Its amazing because if my son was only adhd and not also autistic, there’d be a large portion ofthe population that would scoff at me for medicating, or whatever, but we must DO something about autism. And yes, while adhd can usually be managed with meds and/or therapy, it can also interfere with one’s ability to function in society, and treatments aren’t always effective.

    Also, autism is so varied, a ‘cure’ would only help a small percentage. I’d much rather research dollars go into further categorization and treatments, as a single treatment may benefit multiple forms

  14. Navi May 27, 2008 at 06:44 #

    additionally, neither my husband nor his brother can hold down a job. Neither are autistic. My husband has ADHD and mild bipolar disorder. His brother has only been dx’d with adhd and has a drinking problem. His brother can’t keep a relationship, either. He’s never been able to live on his own. He pays more attention to my kids than his own. My husband is probably (and both he and his family admit it) only better off because he met me in highschool and we married shortly after. While none of their issues are curable, they are generally seen as far less than autism. They are not considered disorders that prevent them from holding a job, a relationship or living on their own

    I would also strongly suggest Jon seek treatment for depression, as his comments suggest it may be an issue…

  15. Ivar T May 27, 2008 at 13:54 #

    I tried making a discussion about what ND really is at AFF recently, didn’t catch fire:

    http://www.aspiesforfreedom.com/showthread.php?tid=13098

  16. alyric May 27, 2008 at 15:03 #

    Kev

    Neurodiversity as a ‘practical construct’ – that is so spot on. I don’t understand the jon mitchells at all. Seems like one big whine that does precisely nothing at all for anyone including jon mitchell. My take on this is that unless you work to understand where someone’s coming from you haven’t a hope in hell of understanding that person and you can do a heck of a lot of harm because you do not know what you are doing. Doing the ‘right’ thing requires a very thorough understanding of what the factors are and in autism, thanks to the ABA industry mostly, the research is so low standard and biased to ABA’s unproven assumptions about how people learn that practically nothing is known at all about autistics. That is also why Mottron’s research group is so important. They’re the first to try to put some hard data into this debate.

    To me the idea of neurodiversity is intensely practical. Forget about this mythical cure – try to work out how being ‘autistic’ dictates how the teaching should go, how the environment should be constructed and how the social game should be approached. The idea of ‘busted normal’ does nothing to help anybody. Taking the practical approach to difference does.

Comments are closed.

%d bloggers like this: