Political Partisanship, Autism Parents Style
Margaret Romao Toigo is the mother of four children—one diagnosed with autism, one “very likely” to be diagnose with Asperger’s syndrome—and a self-described “neurodiversity advocate.” In her essay, The Politics of Autism, Toigo writes about “two main camps”—that is,
….. those who “view autism as a devastating neurological disorder that must be cured, prevented, and eradicated, and those who see autistic people as having a natural variation of human neurological wiring that must be tolerated, accommodated, and respected.
The politics of autism are so polarized, Toigo writes, because “nobody knows very much about autism,” with the result that, unconsciously or not, people come to rely on “individual perceptions and experiences, as well as popular conjecture and tendentious groupthink.” Toigo forcefully outlines some of the dangers of the latter—such as the use of chelation therapy as a treatment for autism and the enduring, though scientifically unproven, theory of a vaccine/mercury-autism link. Toigo notes how adopting a perspective of neurodiversity can, ultimately, help one’s autistic child:
The genuine intent of autistic and neurotypical people who promote the acceptance of neurodiversity is to help people who appear to be having difficulty dealing with the fact that their children are autistic by attempting to convince them that giving up their fight against their children’s autism is not an act of submission or surrender, but rather a simple matter of choosing one’s battles wisely and carefully [my emphasis]. Once families understand and come to terms with autism and the realization that their autistic children will grow up to become autistic adults, their lives become less stressful, they save a lot of time and money, and they learn to enjoy life on the autistic spectrum.
Meanwhile, the folks who refuse to give up on their war against their children’s autism do not see themselves as unable to cope, for they truly believe that they are, indeed coping, by taking the initiative, and being proactive and determined to prevail by any means, even if the struggle entails allowing practitioners of alternative autism treatments to conduct medical experiments upon their autistic children. They are not “evil” people, they are loving parents and families doing what they believe is best for their autistic children because they understand the prejudices that people who are “different” must face, and they want their children to have a chance at blending into neurotypical society so that they can attain the happiness, independence, and success most parents want for their children.
Thanks to Margaret Ramao Toigo for outlining the partisanship between “curebies” and neurodiversity advocates. At the end of the day, we are all parents of autistic children (and more than a few parents may be on the spectrum themselves). There are a lot of differences and clashing views to negotiate, and I hope we can keep on talking to each other, and listening, and learning.
The Politics of Autism appears in the April 23rd Blogcritics.
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POSTED IN: Disability Rights, Parenting, Politics
11 opinions for Political Partisanship, Autism Parents Style
julie
Apr 23, 2007 at 2:55 pm
I could not agree more. We are all parents who want the best for our children and are trying to do that the best way each of us know how. Mine is education and acceptance since my background is working with children who have developmental diabilities and advocating for them with school systems.
Leila
Apr 23, 2007 at 4:03 pm
I consider myself an “independent”. I tend to agree with the neurodiversity side most of the time, because they are more reasonable and reality/science-based, and more respectful to autistic people. But I would pursue a “cure” if there was one, because I’d love to see my son interacting more with his peers, learning how to be safe, and understanding everything that is being said to him. Since cure doesn’t seem to be anywhere in the near future (and there might never be one), I’ll take the educational approaches that seem to greatly improve my child’s ability to navigate the neurotypical world.
Harold L Doherty
Apr 23, 2007 at 7:02 pm
Respect is in the eye of the beholder. “Curebie” is, and is intended to be, a term of disrespect. Demonizing parents seeking cures for their childrens’ neurological disorder is disrespectful.
Wade Rankin
Apr 23, 2007 at 8:15 pm
I certainly agree that there is too much polarization, and that there should be more dialog. And we all tend to fall within one camp or the other. I cannot deny that I am a “curebie” (the term was probably coined in a disrespectful manner, but I can live with it) anymore than you, Kristina, can deny being part of the neurodiversity camp. We may be a bit more centrist than some of our compatriots, but we are what we are.
To be sure, there are extremists on both sides that drive the political debate to the point of being counterproductive. I have to say that use of terms like “eradicated” do not help to lower the heat of the discussion, particularly when implying that curebies as a rule do not respect autistic people.
As I have written elsewhere, I view “cure” as more of a process than a particular result. For me, it’s not about making MY life less stressful; it’s about making my son’s life less stressful. And it’s irrelevant whether I can learn to enjoy life on the autistic spectrum; the point is to help my son enjoy life. I believe that there is so much diversity on the spectrum that there is no one single appropriate response, and I strive to respect the well-reasoned choice any parent makes.
Kristina Chew, PhD
Apr 23, 2007 at 8:45 pm
From where I came from before entrance in Autismland, being in the “ND” camp was more likely for me (though, in all honesty, I’m not at all comfortable with the “ND” label which means one thing in this household, a certain large university in South Bend, Indiana). I’ve long thought it unfortunate that cure, which is from a Latin word cura whose meaning is “care, trouble, pang, woe”—a Latin word with a lot of deep associations for me—has ended up being such a polarizing term.
At the end of the day, I can only speak for myself—-and I have to say, somehow Charlie has done better when I let go of thinking of cure and cause. I can’t say entirely why (not in a comment on a blog post, at any rate); somehow the peaceful easyness, long lost, came back and has stayed.
I know ABA has helped Charlie and ABA is something that is generally under heavy criticism (and more) from the neurodiversity camp or side. When I first read the criticisms of it I felt sad and sore; ABA had helped Charlie so much, had helped our family so much. But then I took a deep breath and carefully read the criticisms, and agreed with most of them. And yet—-contradictorywise—I still believe ABA is a very effective way to teach, but it needs to be clear that the aim is teaching, not some “recovery,” and I think it behooves its practitioners, and us parents, to know its checkered history.
I’m going to keep running on the educational platform.
Phil Schwarz
Apr 23, 2007 at 10:57 pm
Kristina, thanks for posting about this.
My own opinion is that the key to untying the Gordian knot of autism politics is to learn how to *think in parts* rather than assuming we are dealing with monolithic wholes. It isn’t a binary, all-or-nothing proposition — “cure” or “do nothing”. It’s multifaceted and each facet or part of the puzzle needs to be understood and responded to in its own way.
Instead of “curing autism” — how about itemizing and focusing on specific *handicaps and obstacles* that autistic people face, and mitigating *them* — “curing” them, if that word is empowering for you. Identify and then treat the GI issues, identify and then mitigate the sensory distress, identify and then implement alternative means of *reliable*, *trustable* communication if speech is not accessible, and so on.
(That last one really needs to be Job 1 for non-speaking individuals and their families, and I say this both from personal experience early on in Jeremy’s life before he began to develop speech, and from my work and interactions with older children and adults who do not have speech, through AutCom, ANI, and the ASA. Receptive verbal language is usually there in sufficient degree to begin to leverage even when speech is not. It is vastly underrecognized and underdetected. Basic literacy skills — alphabet, phonetics — which can be leveraged through good rote memory and affinity for patterns — can often be developed *before* speech. And once basic literacy is there, with the motor skills to use a keyboard or whatever assistance is necessary to do the same, you begin to have that all-critical reliable communication channel. There is a reason the “terrible twos” end for typically developing kids when they do: it is when *they* have gained sufficient reliability and trustability in their expressive communication to begin to make their needs understood without maladaptive behavior. The same reasoning applies to our kids, on a different time scale, with different media of communication if needs be, and with greater stakes in terms of adaptive vs. maladaptive behavior as our kids get bigger and older.)
Mitigate and circumvent the individual, specific handicaps and obstacles. Recognize that some of it is going to involve change in the individual, and some of it is going to involve changing the individual’s ergonomic, economic, and social surroundings. And don’t think that those surroundings and society can’t be changed. They can be and they have been.
Realize that, particularly once the severest handicaps cease to occupy your full field of vision, you will discover aspects of your autistic family member’s individuality that are atypical, *autistically* atypical, but only disabling to the extent that they are devalued or unsupported by the surrounding society.
It’s *those* things we “neurodiversity” advocates don’t want to see eradicated. Any more than we should eradicate, say, homosexuality, achondroplasia, left-handedness, or non-European physical features because life is harder in unaccommodating parts of our society for people with them. No — we change the society. Shaming it into doing so when necessary.
Realize that sooner or later, you’re going to be up on the barricades with us, on our side of the struggles for rights and equity and parity in the larger society. The sooner you begin, the better outcome you and your autistic family member will have, later in life.
“Curebie” is indeed somewhat dismissive. It is *intended* to connote a certain closed-mindedness, an unwillingness to consider that a different model, a different set of tactical goals, might be the better one to ensure the best long-term strategic outcome.
I don’t call parents who seek the best for their kids and are open-minded about it, who look for reason and soundness in what they seek to pursue, who *listen to* and *leverage* what they can learn from adults living the life, “curebies”. No, for me, that term specifically means those who refuse to listen to alternatives to what they’ve already decided.
I wrote this essay almost a dozen years ago. So much of the landscape it describes is still with us, a dozen years later, with my kids now teenage and young adult. And a dozen years later I *still* don’t understand why there is such intense *non-communication* between the “sides” in this overpolarized political landscape.
Sometimes the vitriol comes from surprising (and disappointing) sources, based on profound misconceptions about what the target of the vitriol is really saying or working for. I am still searching for a diplomatic way to inform the writer of that particular comment how thoroughly wrong he is about what I seek and stand for, and that I indeed do listen to what he claims I do not, even if our approaches, perspectives, and tactical priorities diverge. And that what he perceived as a behind-the-back attack was not an attack, but rather a comment on what I see as stark dissonance between the two statements of his that I commented on. The fact that the one truly visionary and *enlightened* statement he made drew no comments or response simply underscores how toxic the political polarization has become.
I really think there is valuable middle ground, goals that both “sides” in this polarized political landscape could agree on and join forces to work on. I said it a dozen years ago, and I still say it today.
Dave Spicer, the first autistic board member of the Autism Society of North Carolina, and a friend of mine over these dozen years, articulates this point and many more, better than I do. Read what he has to say, and then think about how and towards what goals we could meet in the middle.
Phil Schwarz
Apr 23, 2007 at 11:03 pm
Whoops — Kristina, there was supposed to be the following hyperlink attached to the words “this essay” in the sentence “I wrote this essay almost a dozen years ago.” that begins the 4th paragraph from the bottom in the preceding post:
http://www.autistics.org/library/pschwarz.html
Could you please put it there? Many thanks!
– Phil
Wade Rankin
Apr 23, 2007 at 11:07 pm
As an unrepentent curebie, I’d like to thank Phil for a measured and positive commment.
Phil Schwarz
Apr 23, 2007 at 11:10 pm
Wade, if you start to listen and engage constructively, you’ll lose your “label” ;-) …
Maria
Apr 23, 2007 at 11:42 pm
I think Leila’s description of an “independent” fits me too!
Estee
Apr 24, 2007 at 10:50 pm
Phil,
I agree that there are middle grounds and that we all have different needs. If we can work together, the better for all. Thanks for this great comment.
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