The ND Word: Autism as Difference Not Disease
August 6, 2007 by Kristina Chew, PhD
Filed under Health
The August 7th Guardian has a long article about autistic persons, families with autistic children, Autscape, and the “autism rights movement.” The title gives away the perspective: It’s not a disease, it’s a way of life. Yes, neurodiversity is mentioned, a lot, and many friends and bloggers from and not from the Autism Hub are quoted.
I await the usual round of critique from mentioning the ND word, along with clipped remarks from the usual suspects, inveighing against the notion of autism as a “lifestyle choice” rather than denouncing it as a devastating train wreck of a disorder. Such responses are par for the course when mentioning neurodiversity and questioning the notion of curing autism. I also await remarks “aut“-ing me as a (gasp) neurodiversitite (neurodiversian? neurodiversista?).
And yet: What parent does not keep loving their ever-getting-older child in all his or her difference, diversity, disability? I have now seen the autistic children of many friends grow up, as Charlie has grown up, and whatever our views about the causes of autism, about the treatments (biomedical, educational, otherwise) for our children, whatever our position on vaccines, at the end of the day, we love our children because they are ours.
By whatever names or labels or terms or notions that we prefer to use.
Those are our only choices in life?….”lifestyle choice” versus “train-wreck”? These are the only ways to descrbe how we live our lives with our children?
I choose “Other” or “non-specified”.
Or “fine”.
AJ
Or “not otherwise specified.”
“Fine” appeals to me! (Charlie is still working on getting that initial /f/ sound in.)
Right now it’s “Other.”
I don’t think anyone’s talking about a lifestyle choice.
Kristina –
Sometimes the Harold Dohertys of the world make me flinch a bit, too. Not that he is such the evil guy, because he’s probably not. Not because I have it all right, because I definitely don’t. I just feel uncomfortable that someone cares to go to such great lengths to disparage me from afar, when all I am really doing is openly discussing my worldview and how my son fits into it. If someone says I am harming them and theirs by my viewpoint, I’ll listen. In the case of all the ND doubters I have encoountered so far, I have carefully considered- and rejected- their opinions, and will go on with mine.
I’m with you, Kristina, and please keep up the good work.
There’s room for every opinion, always. As a parent, I try hard to keep learning and to know I’ll make mistakes—-and to try harder!
I may be a little biased here, but I don’t love my children because they’re mine [ours] but because…… they’re irresistible [in an annoying kind of a way].
Best wishes
Funny but I find your guys (and gal) quite irresistible, in your telling, at least!
I’d say: way of being.
Steve D
Thanks for outing me as one of Ms Chews ‘usual suspects’. Given her sensitivity about choice of words I take her phasing to heart and thank both of you for the high honor and compliment that you paid me. (And I enjoyed both Casablanca with Bogart and The Usual Suspects with Kevin Spacey).
As for life style, a life style is a choice not a result over which you have no control. The autistic youths and adults living in institutional care, rarely mentioned on Neurodiversity sites, other than as an excuse to rant against evil NT’s, do no ‘choose’ their life styles, they do not ‘choose’ to live in institutions.
When my son with autism disorder, who does not host an ND blog, grabs my wheel while driving my family, he is not ‘choosing a life style’. When he puts his hand through a window for the 13th time, or bites himself , or pulls his mothers hair, walks out into automobile traffic or screams in a public setting, he is not choosing a life style. Before the ND version of the usual suspects reply with the usual ideology, I love my son deeply and he is a great joy to me but he has a profound and serious disorder not a LIFESTLYE.
I am proud, very proud, to be one of the ‘usual suspects, and I will continue to interject common sense into internet autism discussions, common sense which is almost totally lacking on ND web sites.
Lifestyle? Give me a break.
“The autistic youths and adults living in institutional care, rarely mentioned on Neurodiversity sites, “
Oh well, at least you’ve managed to progress from ‘never mentioned’. Maybe this time next year we’ll have some actual (gasp!) accuracy.
Well, I still need to process how much I agree with either point of view. I’ve read Harold, Kev, and Kristina’s blogs and the commonality that I see in all is love for that boy or girl.
One view stated in the Guardian that I can agree with immediately is universal anti-discrimination. Given some circumstances that I read about regularly in the newspaper I am not sure that we are at the point of neither patronizing, stereotyping nor punishing people for being born different from the norm.
Harold, how do your ABA consultant or therapists help with those situations? It’s taken a lot of teaching, but ABA has helped my son with many of those sorts of behaviors.
Love is the first and last word!
I think we are somewhere in the middle doing well. Our family has learned and grown alot since learning that Rebekah is autistic. I could not imagine her being anything but wha she is and although I do not wish to change her. I can not say that we made the choice for her to be autistic. We would have chosen a much easier way for her. That said we do make the choice to try not to change who she is just help her learn to live the best way she can within the world. Educating her and the people around her has been the most effective thus far. We are fortunate that she is high functioning but that also brings its own challenges. We have to convince the schools every year that she still needs services and when she continues to make progress they want to try fading them out to see if she really needs them. we all love her very much and will continue to let her know that and hope that is enough to get us all through.
“Lifestyle choice” is a transparent straw-man.
The autistic youths and adults living in institutional care, rarely mentioned on Neurodiversity sites, other than as an excuse to rant against evil NT’s, do no ‘choose’ their life styles, they do not ‘choose’ to live in institutions.
They do not. Their caregivers make that decision, and there’s frankly no justification for it. Fortunately, most people are starting to realize that, so much so that very few autistics are now living in institutional care or nursing facilities, in spite of parents like Harold or John Best, who have already decided their children belong in institutions unless cured.
I think there is a misunderstanding regarding Kristina’s phrase about trainwrecks and lifestyle choice.
The fact remains that certain autism advocates who claim there is an autism epidemic do compare autistic children to trainwrecks and claim that we who defend autism acceptance regard autism as a lifestyle choice.
I thought Kristina was warning against any such misepresentation in response to her post or the Guardian article.
The comment on this post continue to reinforce the reality: Autism is a spectrum, with many levels and many different disorders at many different places on the spectrum itself. Sometimes it feels like a train wreck; some people wonder if the child is choosing to “be this way”. But ultimately, a parent’s love is unconditional. We love our children as they are, neurotypical or not.
Yeah, people can rant all they want against it being a lifetyle choice, but they’re not really ranting against anything anyone I know actually believes.
But they are doing something insidious that is part of a list I just posted a link to elsewhere of what’s done to discredit feminist writers (but that I maintain is also, in parts, what’s done to women in general whether feminist or not, and in other parts, to activists and advocates in general whether female or not).
Meaning, the more that people rant against this being a “lifestyle choice,” the more some people will believe that that’s what I and others who call themselves ND actually believe about autism.
By the way, the last prominent person I know of who believed that people chose to be autistic was Bettelheim. He believed that autism was a voluntary choice entered into by autistic children in infancy in response to certain kinds of parents, particularly certain kinds of mothers. If you want to rant against people who believe autism is a lifestyle choice, rant against the psychoanalysts who promulgate that crap, and make it clear that’s who you’re ranting against. I won’t disagree with you.
But if you imply that that’s what I and others who share similar beliefs believe, then I won’t agree with that implication in the slightest.
Institutionalization is evil, all right, but it’s not caused by disability. Of any kind. It’s caused by at this point a combination of prejudices about disability, badly formed power structures, misconceptions about what institutionalization actually is (such that people can think they are “less institution-like” just by making a place prettier or more superficially comfortable or shaped more like a house, none of which are accurate), and particular industries that have a lot more clout than disabled people and our families do (for instance, the nursing home lobby in America). I don’t see “evil NTs” in there anywhere as a group.
Oh, and also, if you go into institutions, do the people in there an actual favor and act as a watchdog for the people who actually have to live there, or an advocate helping them get out and into something better (both of which are things I’ve participated in through assorted self-advocacy groups, and which I’ve also been helped by). Don’t simply gawk at them and come out and tell stories about how bad they have it and then blame how bad they have it on their disabilities. That isn’t helping anyone at all.
Mike, that is what I meant and I ought to have been more clear. Thanks for pointing that out.
The autism advocates or self-advocates that I have met are either aware or are heavily invested in positive outcomes for everyone with an ASD and do their best to address the epidemic that is either real or just the “Ritvo – Volkmar” virus.
kristina, the word is “NeurodiVERGENT”, i think. and i am not so sure about you, now… not with that low AQ score… (~_^)
although “Neurodiversifier” might be nice, as well… Or yeah, i like your “Neurodiversionista”. But the first one sounds like you do [something] on purpose, like diversifying stocks… and the 2nd one sounds like someone who creates a neurodiversion to distract from something else. OK, so nevermind.
[please excuse comic relief]
Heh. I could go for a little neurodiversion right about now … especially after enduring Harold’s self-serving propaganda.
Gonna’ wash that crap right outta’ my brain …
:-p