Neurodiversity in New York Magazine
At the 290th comment in the discussion about Adam Race and the priest restraining order, a question was asked about neurodiversity. The most recent New York Magazine has a long article by writer Andrew Solomon about, indeed, neurodiversity, the view that autism is not an illness, but a difference and a different way of being. Citing the coining of the term by Austrialian Judy Singer and the seminal essay Don’t Mourn For Us by Jim Sinclair, Solomon interviews autistic self-advocates and bloggers:
Ari Ne’eman, President of the Autistic Self-Advocacy Network Kathleen Seidel, writer of the Neurodiversity website and weblog Alex Plank, founder of Wrong Planet Camille Clark aka Autism Diva
Solomon also quotes Lenny Schafter, editor of the “prominent Schafer Autism Report, adoptive father of a severely autistic child, and a vaccine activist, as saying “please don’t write about them” and Solomon notes that “researching this article, I spent a lot of time being talked at by people on both sides, one more doctrinaire than the next”—a lot of time talking to so-called “curebies” and vaccine activists who seek to “cure” and recover their children from autism, which is seen as a devastating tragedy, and the autism-rights activists who speak first and foremost of acceptance and talk about a nascent civil rights movement for autistic individuals.
Solomon–who notes at the end of the article that he came to it “with my own smattering of neurodiversities” (severe dyslexia as a child and acute depression as an adult)—notes a suspicion of scientists on both sides. While vaccine activists claim that scientists are not studying what they should (such as environment causes of autism), autism rights activists, Solomon notes, are concerned about genetic research and the possibility of such research leading to eugenics: If there’s a prenatal test for autism, will people still choose to have autistic children? (The abortion rate for parents who learn they are having a child with Down syndrome is as high as 85-90%.) Solomon seeks to grasp these divergent sides in autism discussion; in quoting Dr. Thomas Insel, director of the National Institute of Mental Health, Solomon not only notes questions of “curing” vs. accepting, but also of love:
In many ways, the question is whether it’s the autistic people or their parents who are unhappy and need fixing. Often enough, the neurodiversity activists argue correctly, the parents of autistic children conflate their unhappiness with their children’s. Parents are in a tough place figuring out how to respond. What should be treated, and what left alone? Much of the debate hinges on divergent ideas of love. The vaccine people believe families who don’t accept their hypothesis are neglecting their children; the neurodiverse people believe parents who describe their autistic children as diseased are insulting them. Thomas Insel, director of the NIMH, told me, “I’m at a point where I think that the parents probably know more than the scientists about autism, and I’ve heard families say, ‘I wouldn’t trade my child’s autism for anything; it’s been the best experience of my life.’ I admire that, but even so, if you could get rid of autism, I would say, go for it. There are plenty of other challenges in life that will make people miserable; let’s at least have people face them without having to wear diapers.”
I don’t see “autism” as something separate from my son and who he is: Even if he could talk easily and at the same level as children his age, and even if his academic and cognitive skills were grade level, I think he’d still be “different.” I do think autism is primarily caused by genetics and I have to say that having Charlie is “the best experience of my life”: Parenting my son has profoundly shaped and transformed me and my husband, Jim, too. Life with Charlie is not, not easy, but life without Charlie is unthinkable.
Solomon ends his article by making a not unfamiliar distinction between “severe autism” and “high-functioning Asperger’s autism”:
Severe autism is a ghastly affliction that should be cured; milder autism may be part of a precious spectrum we wouldn’t want to compromise. As with depression, there can be a tyranny of people focused on a cure who are insensitive to the meaning some people find in their struggles, and there can, likewise, be insensitivity on the part of meaning-finders to the acute suffering experienced by others. The one crucial difference is that depression is now largely treatable (though some illness is intractable) and autism is largely untreatable (despite the partial success of behavioral programs). 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.
I am very wary of making too much of a distinction different “types of functioning” of autism. My son is on what would be called the “severe” end but—from numerous conversations and interactions with autistic adults (I’ve had many intriguing conversations with Ne’eman)—-there are real differences but also many overlaps. For us, there’s more to be gained in understanding autism as a spectrum and I just don’t see my son as having a “ghastly affliction.” Indeed, when I stopped worrying about “recovering” him and making sure he did this that and the other “appropriately,” things got much better. Charlie does not talk a lot, but he picks up on everything that is said and happening around him. I don’t know if he’ll someday be able to speak up for his rights or what this might mean to him, but I leave this to him.
I have a theory and it’s that all parents, however they dislike the notion of “neurodiversity” and however “severe” their child is, still subscribe to it, in unexpressed ways. The parents of older and adult autistic children whom I’ve met refer constantly to the differences, quirks, needs, impairments of their children; sometimes these are frustrating and painful, sometimes these are noted with a wry smile and a shrug of the shoulders. My first job as Charlie’s mother is not cure, but to take care of him and prepare him the rest of his life, and to make sure he knows that, no matter what, he is always, always loved and accepted just because of who he is, my son, Charlie.
Tags: asd, asperger, autism, autism blog, disabilities blog, Family, family blog, magazine, neurodiversity, new york, Parenting, pdd-nos, VaccinesRelated Stories
POSTED IN: Disability Rights, Genetics, Parenting, Philosophy, Treatment, Vaccines, new york
28 opinions for Neurodiversity in New York Magazine
a long-time poster
May 26, 2008 at 4:33 am
Interesting. Solomon says that “neurodiversity activists can get in the way of science”. I don’t think so. I have, however, seen a whole bunch of vaccine freaks, woo-mieisters and quacks completely derail the science. Also: Great job addressing the whole “ghastly affliction” rhetoric, Kristina.
Shawn3k
May 26, 2008 at 9:13 am
Never once have my husband and I considerered our son’s Autism (Asperger’s is his official diagnosis) an affliction. It is simply part of who he is…as much as the freckles under his eyes or the insane cow lick near the right side of his forehead. People have asked, if they made a “cure” today…would you take it for your son? The answer is always no - there is nothing to cure. Autism is part of who he is, what makes him uniquely Jonah and I think, has made us better for it as well.
Karen
May 26, 2008 at 10:19 am
You said, “Even if he could talk easily and at the same level as children his age, and even if his academic and cognitive skills were grade level, I think he’d still be “different.”
That is so true in my experience. My son would be on the “high end” of the spectrum and he’s very conversational (thought it’s not typical, he’s got some pragmatics issues for sure) and has great academic and cognitive abilities. But he is definitely “different” — I see it every day, he just thinks differently than most people I know think. In my opinion, this makes him very special. He has stuff to teach the rest of us.
I am also uncomfortable with making too much about low vs high functioning after reading the blogs of so-called “low functioning” people. Again, I think it comes down to a person’s ability to communicate via the most acceptable means (speaking) or not, and this really should not be a measure of what a person has to offer the world.
Thank you once again for such an insightful post; I learn so much from you and the comments, too.
Amanda
May 26, 2008 at 10:41 am
I think it’s interesting that one person said her daughter talks but not to say “my mind is different than yours” but rather just “I’m thirsty”.
Given the amount of people I know who are totally capable of saying “My mind is different than yours” but not very capable of indicating and/or noticing that they’re thirsty.
Although I remember that same girl as saying in a video once, “Mommy why are you crying?” which is far more complex socially than “I’m thirsty.”
Bonnie Sayers
May 26, 2008 at 11:55 am
Wow - ghastly affliction. Although I have written down phrases I come across that parents use like this one - “as the father of one chld who was snatched from the spiral of autism”.
I will usually say that my kids are on opposite ends of the spectrum and if asked say Nick is HFA and matt is nonverbal, not toilet trained and in special ed.
I read an article this AM about David Kirby being invited to speak to politicians at the House of Parliament. They call him an autism link writer.
Beth
May 26, 2008 at 12:03 pm
The problem is that people think in terms of “curing” and “fixing.” They attach so much to having or losing the label. Our focus is to help our son work around the obstacles that his Asperger’s and ADHD present to him and to use the gifts that his Asperger’s and ADHD present to his best advantage. The label itself is nothing more than a tool to get the services that he needs in order to learn and grow.
Jen
May 26, 2008 at 12:17 pm
My child was diagnosed about 6 months ago, so my partner and I are still in the process of trying to come to terms with what it all means. I admit that I spent a lot of time crying when the word “autism” was first mentioned as a possibility, and when he was diagnosed. However, we’re realizing that for all that he struggles with communication and language, he also has amazing strengths, and that those strengths can and should be nurtured, and encouraged. Still, acceptance takes time, and I would be lying if I didn’t say that I didn’t wish that I could wake up one day, and have the last year and a half be a bad dream. That doesn’t mean that I don’t love my child, and that I don’t recognize what a wonderful person he is- that just makes me a parent who wishes she could make life easier for her child.
BTW, I have to thank all of the parents and Kristina for sharing their experiences on this blog- it’s been a valuable resource for me.
Kristina Chew, PhD
May 26, 2008 at 1:49 pm
@Jen,
When my son was being diagnosed, I cried every morning before dropping him off (he was going to daycare at my employer at the time and having an impossible time). I’d walk into class to teach and the students finally said, “Please stop crying at the start of class…….” A very difficult time, it was.
Acceptance took me a lot of time and even when I got comfortable saying “he’s autistic” I still had so many thoughts of Charlie “catching up” and making it to kindergarten on time—-and my son never went to kindergarten; he was in an autism classroom and has stayed there.
I feel as a parent that it can be a dance. My son has a lot of limitations, a lot of challenges and many more ahead of him. I’ve come more and more to focus on where he is and on his achievements and gains, however “small” they seem; certainly he has opened my eyes to so much in the world that I would never have noticed and each day with him is cherished.
Thank you and hope your son is doing well—just thank you. Other parents — here and elsewhere (and Kathleen Seidel and Camille Clark in the article are two of those parents) have helped me tremendously when things got too hard.
Joseph
May 26, 2008 at 2:18 pm
Lenny’s statement, “please don’t write about them”, says a lot I think. It was not, “let me show you why they are wrong.” It was basically, “I wish they didn’t have a voice” followed by “they don’t exist.”
Bonnie Sayers
May 26, 2008 at 2:46 pm
I stopped subscribing to Lenny when he initiated the pay for service, plus the fact that twice over the years he printed my content without permission.
I am not missing out on much by not reading his newsletter.
Ms. Clark
May 26, 2008 at 5:22 pm
Thank you, Kristina for noting that I am one of “the parents,” too. Regarding that idea, somehow I think that Tom Insel was not thinking of me and Kathleen when he indicated that the parents know more than the scientists. :-)
Andrew Solomon interviewed me via email. I wrote a very long answer to his questions (as you might imagine!). Nowhere in my discussion with him did I suggest who he should NOT interview. Interestingly, I understand that the way Solomon got Lenny’s contact info was from one of the ND who encouraged Solomon to contact Lenny. And when contacted Lenny tells Solomon not to interview the kind of person who gave Solomon Lenny’s contact info so that he could have a voice in the article.
That’s just stunning to me. I hope that people don’t take away from the article that the neurodiversity leaning are the same kind of bigots and trying to shut down others from even speaking. I didn’t care for the tone that Solomon had that sort of hinted at, “yeah, but the ND are just as crazy as the mercury parents.”
Who is it that is making death threats and other kinds of threats against scientists who don’t obey their demands? It’s the mercury malicia. It’s not the Aspies or Aspergians or Wrong Planet members. It’s not the skeptic bloggers who love science.
Kristina Chew, PhD
May 26, 2008 at 7:22 pm
I also stopped subscribing to the SAR when one had to pay a fee—and also when I started to see that the same content was accessible via search engines.
I liked the honesty with which Solomon spoke about his confusion about getting his head around the notion of neurodiversity. I was saddened to see that last paragraph and Jim and I were just talking about our discomfort with Dr. Insel saying that about adults in diapers. And maybe this was just not possible for someone who’s not a regular denizen of the autism blogosphere/internet community, but I don’t think Solomon quite caught the vehemence that “the neurodiverse” are described by other beside Schafer and Mark Blaxill.
theasman
May 26, 2008 at 10:55 pm
What alex plank ever do for autistic rights? all he ever did was to hit on girls on wrongplanet by making them admins then demoting them if they turn not to be so pretty.
Kristina Chew, PhD
May 26, 2008 at 11:23 pm
That I wouldn’t know about. But what did you think of Solomon’s views on “neurodiversity”?
Cliff
May 27, 2008 at 3:10 am
I posted at length about this issue on my little blog, but to summarize I wasn’t all that impressed with Solomon, who ultimately it seemed didn’t know what questions to ask.It seemed he made some critiques that were some of the straw men he complained about.
Cliff
Kristina Chew, PhD
May 27, 2008 at 10:26 am
I think that’s the way the article ended up by the closing 2 paragraphs—–prior to that, it seemed that he was really “wrestling” with the notion of neurodiversity (as many still seem to do…).
This is Cliff’s post, which looks carefully at how Solomon uses his sources and interviews:
http://crimsonthought.blogspot.com/2008/05/ok-so-i-am-now-officially-back-on-web.html
Laura
May 27, 2008 at 10:44 am
As some one relatively new to the scene, neurodiversity has left a strong impression on me. My son basically presents as weird. His speech is taking off (albeit late), his social referencing skills are good and he doesn’t stim much, other than a little toe walking and hand sucking. I feel like saying to the world: he’s weird, deal with it.
And my words aren’t hollow. I’m shunning ABA and biomed, in part because I’m skeptical of their value with respect to my son, but also because I don’t want to change who he is. (Not that that’s the right approach for everyone.) Let him be weird. Are we so conformist that we have to fix weird?
On the issue of degrees of autism, I agree with your criticism. While I believe that degrees of autism exist (in quality, quantity or both), it’s not just to assign value to that individual based on that degree. Those who have it more than others aren’t retarded or in their own world. Scientists that don’t presuppose that “severe autism” is a “ghastly condition” are discovering that the truth is quite the oppposite. Sadly, if some one progressive like Solomon doesn’t see that, then it’s going to take the rest of the masses quite some time.
Synesthesia
May 27, 2008 at 10:57 am
Kristina, I like your point of view and learn a lot from it.
theasman
May 27, 2008 at 12:54 pm
Synthestesia,
it is like if they pointed to all the black people with heart disease and leukemia and said this is awful and then develop a prenatal test based on the presence of melanoma
theasman
May 27, 2008 at 1:02 pm
Kristina,
It amazes me how they still dont figure it out. Why this debate is so acrimonious. We are the same kinds of people on both sides of this issue.
These anti vaccine and pro cure people think their kids autism came out of the blue. the horrid truth in their eyes is that that it came from them!
These undiagnosed self hating aspies are burying their head in the sand. As much as we hate john best he is probably somewhere on the spectrum.
We are one big dysfunctional family.
Synesthesia
May 27, 2008 at 1:05 pm
Yes, that would suckm since such a thing would mean people of my complexion would not exist.
I kind of have trouble, and do not be offended, viewing autism as a “ghastly condition.”
Kristina Chew, PhD
Jun 2, 2008 at 3:01 pm
I think I prefer not have the word “ghastly” applied to my son, but that’s me.
NPR has a story on Ari Ne’eman and autistic self-advocacy.
Synesthesia
Jun 2, 2008 at 3:43 pm
I agree totally with Ari Ne’eman’s point of view. Pink Floyd’s the wall and that giant meat grinder comes to mind.
I just like the neurodiversity point of view a lot better. I feel pretty diverse in terms of how I think and how my brain works.
An Argument about “Difference” and “Deviance”
Jun 3, 2008 at 12:13 pm
[…] is not critiquing the notion of “neurodiversity” in particular. The main business of his article is to note a pervasive similarity in how all […]
Joseph
Jun 3, 2008 at 12:34 pm
Did you catch Ari Ne’eman’s interview with NPR? I thought it was pretty good.
Kristina Chew, PhD
Jun 3, 2008 at 12:59 pm
Yes—-wonder where he might appear next—
farmwifetwo
Jun 6, 2008 at 11:46 am
After reading the article I feel I probably sit in the middle btwn cure and neurodiverse. You will find this house very “normal”. We live with Autism, we don’t live for it…. and they get nagged to pick up after themselves like every other child out there or sit at the table to eat. There’s flapping, hand wringing, vocal noises and a SLP that comes every other week…. but that’s just the extras that come along for the ride.
As I mentioned before I do not think that Asperger’s and NVLD should be mixed in with PDD and autism. Living with both… they are not the same… overlap - Yes. Same - no. All are disabilities of varying degrees, within those degrees people have different strengths and weaknesses. But Aspergers and NVLD are very different than PDD especially as one ages and matures.
But then again my boys sit on opposite ends of the scale… so I should be entitled to that view.
I thought the article was very interesting and well written.
S.
Be Careful What You Label Toxic
Sep 10, 2008 at 5:28 am
[…] scrutiny. Seidel is also featured in Dr. Offit’s new book, and was featured as well in a New York magazine article on neurodiversity. She’s indeed been rather “toxic” (in a figurative sense) to the vaccine-autism […]
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