Susan's Blog

Friday, March 4, 2016

Book Excerpt: People First Or Autism Pride?

People First or Autism Pride?

You will find in reading this book that I interchange the terms “people with autism,” with “autistic people.” I am well aware of and respect the People First movement—the widespread effort to avoid defining someone by their disability (as in the latter example). A few of the people I interviewed specified that they preferred People First language, and I made sure I wrote their section with that in mind. However, I also know of many people on the autism spectrum who prefer being referred to as “autistic.” This group feels that they are indeed defined by their autism, that their personality is wrapped inextricably in autism, and, fur­thermore, that this is a point of pride. Hence, my solution is to use both terms interchangeably, because I see the value in both philosophies.

No doubt people will also note that I do not use the term “autism spectrum” too often, nor do I specifically distinguish between descriptions like high functioning, low functioning, Aspie, Aspergian, Aspergerian, pervasive developmental dis­ordered, ASD (autism spectrum disorder), and just plain old autism. This is because the current DSM-V (Diagnostic and Statistical Manual Volume Five) has eliminated many such divi­sions on the autism spectrum, focusing instead on descriptive designations, and on determining possible features of autism (e.g., social, communicative, behavioral, sensory, or intellectual deficits) rather than labeling kinds of autism. Though there has been much discord among the medical, psychological, and autism communities about these changes in the DSM; many agree that terms such “high-functioning” or “low-functioning” autism are definitely outmoded, as they sprung from verbal competence or lack thereof. We now know that a person can be without verbal speech and still have the ability to express himself successfully. Likewise, someone with verbal speech and a very high IQ might be completely debilitated by depression or social, sensory, or behavioral challenges. So I, too, will stick to descriptions of skills and challenges to give you the full human picture of my subjects.

Speaking of the full human picture . . .

In my narrative, I try to avoid describing an autistic person’s unusual actions as “behaviors,” “stims,” or “stereotypies.” To me, these terms are used negatively to signal the need to control or eliminate the behavior or activity, and I believe for the most part that autistic people need to act the way they act. This includes talking to oneself, flapping, pacing, thumb-sucking—all the things my Nat does with autistic exuberance. I’ve learned from Nat and from more communicative adults with autism that it’s “better flappy than unhappy.”


As an autistic who rejects “people first” terms (which I experience as “pointing fingers” terms) I’m happy you made the choices about terminology that you have made, and that you have explained them as you did.

However — and here is where I’ll say the things that, when I say them, get me labeled by some ideologues as “a traitor to autism’s cause” (whatever that is claimed to mean!) — I’ve never understood why anyone (autistic or not) expects anyone (autistic or not) to feel, let alone to demand that others feel, “pride” in something inherited and unchosen (such as one’s eye color or hair color or inborn allergies or one’s mother’s maiden name or her grandparents’ income or their great-grandparents’ birthplace or native language). It is ridiculous — worse, it is chauvinistic — to take pride in what one has neither chosen nor achieved nor created, but has simply been born into. Autism is not an achievement — it is certainly not a choice.

As to “identity” — why on Earth is anyone (autistic or not) telling me to equate my “identity” with one or more of the ways in which I can be classified into the same group as a number of other people (each of whom, like you and like me and like everyone else, _has_ an individual identity apart from any group and before being assigned to any group)?
My identity, my individuality, is precisely _not_ my similarity to other people — and I resent being told (by another autistic, or by anyone) that I should fail to distinguish identity from group-membership. It is as if I’d been told: “You aren’t ‘Kate Gladstone’: you are ‘Autistic #142857.” Reassigning an individual identity to a group (“autistic” or “American” or whatever else one is expected to accept “identifying as”) is indefensible and distasteful because I am not a unit of a hive-mind and I do not wish to think and speak as if I were such a creature and could not (or must not) distinguish myself (my identity) from a category membership.

— added by Kate Gladstone on Friday, March 4, 2016 at 11:36 am

Hi Susan:

I agree with you 100% that stereotypy- flapping, self talk, etc. is an important part of regulating or expressing yet I would say that almost all of the ABA centers (particularly in New England) simply can not think outside the box and the BCBA’s write extensive plans to eliminate or reduce these behaviors almost always labeling them as “interfering ” and/or “socially inappropriate”. They (the BCBA’s) spend endless amounts of time trying to gain “control” over these “behaviors.” It’s the wrong approach imo. How did you deal with that when Nat was in his ABA center? It must have been frustrating for him and you. We have walked away from the canned ABA establishment and have turned to RPM. Thank GOD we did!

— added by Chris on Friday, March 4, 2016 at 11:40 am

I am a diagnosed autistic whose sensory sensitivities include the sight of flapping and the sound of many verbal/auditory stims, which I simply cannot tune out. What is the proper autism-friendly thing for me to do, when stemming is going on around me in circumstances where it is impractical or otherwise inappropriate to wear earplugs and turn away? (For instance, this is a problem at autism conferences, which I frequently attend for personal and professional reasons.)

— added by Kate Gladstone on Friday, March 4, 2016 at 12:40 pm

I don’t have an answer. What do you do now?

— added by Susan Senator on Friday, March 4, 2016 at 12:43 pm

Well, the reason we stayed with the May is that the teachers themselves were for the most part the sweetest, most outgoing and talented people I’ve ever met. Some of them became family friends, respite caregivers of Nat’s. They really *got* him and so they’re teaching approaches were gentle and respectful. They loved him. And they used the breaking-down into small steps part of ABA to good advantage, and he learned many skills that way. I love the May, but not because of ABA.

— added by Susan Senator on Friday, March 4, 2016 at 12:45 pm

To answer your question, Susan: What I do now is that I suffer painfully in silence. Sometimes I tell people about it, especially when there is a LOT of it going on
(e.g., if it’s an autism conference where I’m a presenter at some session
and HAVE to face the audience or I fail to communicate & I likewise fail to get essential inputs/feedback on audience response)
— I don’t ask anyone present to stop stimming, because I am treated badly when I need that and ask for it, but I do state my needs.

A growing problem for me, at an increasing number of autism conferences (and other disabilities-related events), has been that some autistic and/or deaf speakers request (and some events/conferences pre-announce and make standard, for one or more presenters/events) that applause must be given, not by clapping (which is a sensory-sensitivities problem for at least some autistics and some other people) but silently, in the form of what is sometimes called “jazz hands” — spreading one’s fingers wide and waving the hands horizontally (which is the American Sign Language sign for “applause.”) Although I can manage the sight when just one person is making this sign, I am very painfully hurt when two or more people do it: in proportion to the number of people doing it: a sensory sensitivity just as powerful and painful, for me, as the one that some other autistics suffer when the audience applauds conventionally. Closing my eyes eliminates the sensory problem — but /a/ would wrongly give the message that I was withholding applause (even if I were also myself applauding in the same manner while closing my eyes: this would, further, create an incongruously inconsistent message, and giving OR receiving an incongruous and inconsistent message is a deeply painful trigger for me and, I know, for at least some other autistics), and /b/ if I myself were ever on the podium during some event where “jazz hands” was the prescribed form of applause, closing my eyes to it/turning away/leaving the stage would be very rude and insulting in a way that I would not wish to be to an applauding audience!
When I mention the above to fellow autistics (e.g., fellow autistic advocates/activists) who are committed to stating that everyone at all times /a/ must absolutely and unconditionally accept and accommodate everyone else’s sensitivities & /b/ must also absolutely and unconditionally accept and accommodate everyone else’s stims — well, sometimes I am accused of not being “really autistic” (or not being “autistic enough” or not being “autism-positive enough”) after all. (My response, when this happens, is to remind those who make that objection — since these are usually autistic advocates/activists for autism acceptance — of their own frequent/documented assertions that it is absolutely inappropriate and unacceptable ever to assert that any diagnosed autistic is not actually autistic, or that s/he is insufficiently autistic, etc. — this unfortunately leaves them in observable confounded anger, at me, though by their own premises and assertions they forbid themselves to acknowledge it. So they don’t know what to think, and what to tell me, and at that point they sometimes say so.) I have also faced, once or twice, similar angry objections from deaf people (including, once, from a deaf autistic person), claiming that my sensory sensitivity to the sight of a roomful of “jazz hands” applauding in sign language means I have to hate all deaf people. (They already have, and use, another reason to decide this about me: I don’t capitalize “deaf,” for the same reasons that I don’t capitalize “left-handed,” and there are many deaf people — also, increasingly, some autistic people — who demand that everyone, deaf or autistic or not, must capitalize this category [“Deaf” or “Autistic”] in order to show the proper “pride.” And, yes, there are some autistics who have decided I must hate all autistics because I don’t capitalize it as an adjective or a noun or in any other context.)

— added by Kate Gladstone on Friday, March 4, 2016 at 1:24 pm

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