15 February 2012

The De-legitimization of Autistic Voices

De-legitimization is the process by which voices are silenced through removing their legitimacy. This can be a good thing, for example, when one understands that a Senator who was raised in a wealthy family and is still wealthy today has no legitimacy to express the concerns of the poor, or when one understands that a totalitarian government that represses all opposition and dissidence has no legitimacy for its people, who did not choose and do not want it. Those might be considered positive or constructive examples of de-legitimization.

But for any marginalized community, and for me in particular as an Autistic, de-legitimization can become a frightening and threatening process that occurs nearly constantly. For Autistics, de-legitimization is the name for what happens when people, usually but not always non-Autistics, attempt to remove any legitimacy from the words or opinions of the Autistic person, so that that voice is rendered silent and unheard, so that that voice is not lent credence or granted validity.

There are two major ways that this happens.

The first fallacy is the "not Autistic enough" or "not really Autistic" fallacy. This is the fallacy that assumes that because a person appears to be "high-functioning," has a relatively invisible level of disability, or is assumed to be less disabled that that person is not Autistic or disabled enough to understand more severe disability in Autistic people. Sometimes the ability to write a blog post is conflated with having adaptive functioning skills and life skills such as taking care of one's own hygiene, cooking meals for oneself, transporting oneself, and determining one's own schedule, when in many cases, this is simply not true. Sometimes the ability to write a blog post is even equated with the regular and consistent ability to use oral speech as a means of communication, when this is not always the case.

It is not possible to be more or less Autistic than someone else, but it is possible to be more or less disabled than another Autistic person. And it is true that every Autistic person has a different set of strengths, abilities, challenges, and needs, and that in the context of the society in which we live, some Autistic people are more disabled than other Autistic people. But part of what defines being Autistic is being disabled, and thus it is not possible to be Autistic and to not be disabled. It is impossible to be Autistic and not share in the experiences of the world that bind together those of us who are Autistic. At its core, autism is characterized by key differences in information and sensory processing that typically manifest as communication challenges, social atypicalities, and disability.

Autistic adults, regardless of specific abilities and needs, can relate to other Autistic adults and children on a level that is not quite possible for non-Autistics. That is not to say that an Autistic stranger will understand an Autistic child better than the child's non-Autistic parent -- and certainly not that any random Autistic stranger will love that child in any way that can mirror the parent's love -- but it is to say that because all Autistics share certain common characteristics on the neurological level, it is tragic and unfortunate when anyone dismisses the voice of an Autistic adult on the basis of not being Autistic enough to relate to or understand another Autistic's challenges or needs.

Sometimes the argument is made that if an individual can communicate or express ideas at all, he or she cannot possibly actually be Autistic because of this expressing of ideas, but this is not at all true. Behavior is communication, as Julia Bascom observes so powerfully, and advocacy begins with "no," as Kassiane Sibley knows from personal experience. Extreme challenges with expressive communication do not always mean significant challenges with receptive communication. Inability to speak does not mean inability to sign or point or type -- a few words at a time or entire blog posts. And the use of oral speech does not necessarily mean the effective or pragmatic use of oral speech either.

But this idea of some Autistics as not really Autistic enough or not Autistic at all is not the only fallacy repeatedly used to de-legitimize the voices of Autistic advocates. The other fallacy, in comparison, is almost worse, and possibly even more damaging. This second mistake is the fallacy of dismissing an Autistic's thoughts or ideas because the person is Autistic -- it is the fallacy of "too Autistic to understand." The argument is that an Autistic person is incapable of perspective-taking, understanding circumstances different from his or her own, or empathizing, and that therefore the Autistic person cannot truly appreciate or understand the complexities of a situation, policy, issue, or life. Based on this argument, any Autistic person has no reason to speak, literally or metaphorically, at all -- whether about his or her own life and needs or about issues and ideas that affect all Autistic people and their families.

This argument reeks even more of ableism than the previous one. Most of its assumptions are patently untrue. While Autistics might have significant trouble reading facial expressions or body language, or interpreting tone of voice or other prosodic elements of oral speech, we by no means are incapable of perspective-taking. An inordinate number of Autistics, in fact, continue to play imaginary play games well into adulthood, such as various types of roleplaying games. Other Autistics are writers of novels and short stories and fanfiction. All of these activities require the ability to take different perspectives from one's own, and at a minimum, the roleplaying and fanfiction worlds are often very much niches for Autistics and Autistic Cousins (ACs).

And the myth of lacking empathy is one of the most tragic and ableist myths still rampant in our time. There have been a few studies dissecting this myth that demonstrate that not only do Autistics experience empathy as much as their non-Autistic peers, but in certain circumstances, Autistics on average experience higher levels of empathy.(1) It is well known that Autistics have difficulty interpreting nonverbal communication standard to the subtext of social interactions between non-Autistics; thus, it ought to be no surprise that Autistics may not interpret nonverbal cues that someone is upset or afraid or frustrated or sad or anxious, and then respond in a way that suggests the Autistic is oblivious to the other person's feelings. It's not that the Autistic is oblivious to other people's feelings so much as the Autistic is unable to interpret or analyze the body language or implicit hints to those feelings.(2) Autistic people can make very loyal friends.

The argument that Autistic people are incapable of truly understanding a situation or an issue lacks merit. Of course, it may be that there are individual Autistics who may not understand a particular situation or issue or its complexities, just as there may be individual non-Autistics who may also not understand that same situation or issue or its complexities, but that lack of understanding likely has very little to do with the fact that the individual is Autistic. The idea of self-advocacy, in fact, originated with the intellectual and cognitive disability community rather than with the Autistic community -- these people might represent, to some, the epitome of a person incapable of higher-order thinking and reasoning on the basis of having an intellectual or cognitive disability. But self-advocates with intellectual and cognitive disabilities have repeatedly challenged these assumptions and stereotypes about their capacity to participate in determining not only their own lives but also public policy.

The de-legitimization of Autistic voices only serves to confirm that we still have a long journey to take. Until Autistics can be given equal footing at the table, in the conversations about autism and about us, without repeated inquiries into our fitness to be speaking or to be representing other Autistics, we will not be equal members of society.

If a young Black or African American woman were told she wasn't "black enough" to represent other young Blacks or African Americans, there would be national uproar. If she happened to be so light-skinned she could almost pass for white, and was told that therefore she had no right to call herself Black or African American, much less speak for other Blacks or African Americans, there would be considerable upset. Or if she happened to have lived in the poorest part of St. Louis all her life, dropped out of high school to work to support her family, and never finished her diploma, only to be told that because of her socio-economic and educational status, she wouldn't be able to understand the issues facing and directly affecting her as a young Black or African American woman from a poor part of the country, there would be outrage. Of course she has not personally experienced every possible life experience of every Black or African American in America. Of course her personal triumphs and struggles are individualized and specific to her life. But she has every right to speak as a representative of other people like her.

While those arguments against such a young woman would undoubtedly be the target of much criticism in the public sphere, they exemplify precisely the type of de-legitimization that the ever common fallacies of "not Autistic enough" and "too Autistic to understand" seek to emulate and apply to Autistics with devastating consequences. And it needs to end.


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(1) Kimberley Rogers, Isabel Dziobek, Jason Hassenstab, Oliver T. Wolf and Antonio Convit. "Who Cares? Revisiting Empathy in Asperger Syndrome." Journal of Autism and Developmental Disorders. 37(4): 709-715. DOI: 10.1007/s10803-006-0197-8

(2) "Autistic people may, therefore, neither at all be mind-blind nor lack empathy for others, but be hyper-aware of selected fragments of the mind, which may be so intense that they avoid eye contact, withdraw from social interactions and stop communicating. In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome."
Henry Markram, Tania Rinaldi, and Kamila Markram. "The Intense World Syndrome – an Alternative Hypothesis for Autism." Front Neurosci. 2007 November; 1(1): 77–96. Published online 2007 October 15. Prepublished online 2007 September 1. doi: 10.3389/neuro.01.1.1.006.2007

20 comments:

  1. "...a Senator who was raised in a wealthy family and is still wealthy today has no legitimacy to express the concerns of the poor..."
    That is a stereo-typed statement, and not at all a legitimate example of de-legitimization.

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    1. I beg to differ. The statement is an analogous hypothetical example that does not generalize or blanket, nor name specific individuals, nor claim to represent or describe all members of a group. It says "a Senator," and the implied mood is the subjunctive, suggesting a hypothetical rather than an assertion of any actual situation. No specific governing system or entire group is named -- it is a description of "a" single hypothetical Senator. In this context, it is a legitimate example of the idea -- a wealthy person who has always been wealthy cannot by definition relate personally to the experiences of a persoh who has experienced poverty.

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  2. Hi Lydia. I enjoyed the post. Thanks for the empathy links.

    Re. the black/white comparison: it seems to me this *is* an issue. Remember Bush's appointment of Condoleeza Rice and Colin Powell -- that first photo of his team made a very powerful statement about inclusion -- and the resistance to it from some on the left, the idea that black conservatives are not "truly" black. There have been similar discussions about Obama and whether he's black "enough" versus too black. There's plenty of evidence of racism *within* non-white communities based on varying skin colors. As you acknowledge, not all African-Americans necessarily have had the same experiences of racism (or anything else). I would assume they'd all experienced racism but that the range of experiences might lead to a range of perspectives -- e.g. Clarence Thomas has clearly experienced the career benefits of affirmative action but is committed to denying it and dismantling those benefits. He doesn't strike me as a reliable representative of the African-American experience, though I can't very well deny that he represents one of the possible outcomes.

    So to me there's a difference between speaking out as a member (or representative) of a particular community, and *representing* the community, which comes with the community's agreement (e.g. an election). I could speak as a white 40-something Englishwoman, but I wouldn't presume to speak for white 40-something Englishwomen. This is regardless of whether I've lived in the US for 15 years and have taken dual citizenship and therefore could be seen as not English *enough*, which I could accept or dispute (either would be legitimate).

    Within the autism community this seems to me an issue that can't be resolved except by tolerating the lack of consensus and the diversity of views. If we're talking about inherent legitimacy, and the parents of non-speaking autistic children (which I'm not one of) make the case that Aspergian self-advocates can't represent them in all respects, we can't very well claim that's illegitimate, or disprove it. As a parent I'd be unhappy if Jenny McCarthy claimed to represent me.

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    1. Hi Lucy,

      Thank you as always for your comments.

      I don't dispute that racial representation or misrepresentation is an issue. I think what I tried to convey is that whenever someone raises the concern that a particular Black or African American is incapable of representing Blacks or African Americans, it raises significantly more controversy and upset, both within the community and outside it, than when a particular Autistic is accused of inability to represent other Autistics (where the upset tends to occur only along fault lines, and it seems it's mostly Autistics raising the issue by demanding recognition as legitimate voices.)

      Obviously, no individual belonging to any group can speak on behalf of every other individual who belongs to that group, as there is a diversity of opinions and experiences and even priorities within any group of people, including Blacks or African Americans as well as Autistics. But it should also be considered that a person who does not belong to that group will often have even less "legitimacy," so to speak, to represent anyone from that group than a person who is from that group -- i.e. a White or Caucasian civil rights activist or a non-Autistic ally. That doesn't mean that those "outsiders" shouldn't speak or shouldn't be involved with advocacy or community building efforts around those communities, but it does mean that they should recognize that they do not share the core characteristic(s) that make an individual a member of that group.

      In the autism community in particular, I find it very disheartening that very well-meaning and wonderful people frequently imply that all or most self-advocates are "Aspergian." That's not actually true, as we know there are a number of non-speaking Autistics who have become advocates for themselves and other Autistics. Yes, it is true that any given Autistic will not automatically understand or know well any particular Autistic child's personality or history; that's not possible. But an Autistic will share certain experiences and perceptions with that child that that child's parent, if not Autistic, will not.

      I hope my clarification helps.

      Blessings and peace,
      Lydia

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  3. Thanks Lydia. I wasn't assuming that all self-advocates are Aspergian, and I'm aware of (and thrilled by) some of the contributions from non-speaking autistic people. I hope for more. I was observing that it's a common criticism that "HF" can't speak for "LF" -- though "high-functioning" seemed to me an even less useful way to capture it than Aspergian.

    I don't disagree with you. I will say though that non-autistic people are intrinsically part of the autistic scene. Non-autistic parents are not in a position to convey their autistic child's experience of the world (although I hope they have some insight); but they are in a position to represent their child in other ways. And parents (autistic or not) need to represent themselves and their experiences as parents.

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    1. You write "I will say though that non-autistic people are intrinsically part of the autistic scene. Non-autistic parents are not in a position to convey their autistic child's experience of the world (although I hope they have some insight); but they are in a position to represent their child in other ways." I don't disagree with this at all. I don't mean to suggest that non-Autistic people are not naturally part of the autism community, because that is patently untrue. What I do mean to suggest is that only Autistics can experience what it is to be Autistic. Parents have every right to speak for their children, and indeed, they must, especially when faced with the possibility of injustice being done to their children.

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    2. Yes, sure. I didn't interpret you otherwise.
      I have a friend with a non-speaking child, and she and I definitely have experiences in common that we don't feel parents-of-NTs fully understand, so we bond over those. Still, I'm musing now on whether I could represent her as an autism parent. I think not. So I guess my point is about the groups within groups and the importance of broad representation. I don't think I'm making a counterpoint to yours, just going with the basic idea.

      I read your piece as being more about the judgements of non-autistic people re. whether you are actually autistic. That's become one of the big issues with the DSM changes, the line that's now being pushed that the dx is going to many people who are not definitively autistic, or not autistic "enough". I spoke with the psychiatrist who wrote that NYT op-ed claiming AS is widely over-diagnosed (I wanted to know if he had some secret source of data backing him up)(he doesn't). He said the issue with the "not-really-autistic-people-with autism-diagnoses" (as he sees them) is one of severity, not a qualitative difference. It looks as though the committee expects a lot of those people to be diagnosed with social communication disorder rather than ASD. None of this helps with the credibility issue.

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  4. Lydia: As always, you've written with enormous insight, and I appreciate that.

    You wrote: "De-legitimization is the process by which voices are silenced through removing their legitimacy."

    One of the most profoundly disturbing examples of this that I am increasingly perceiving is between the generations of people on - at least ostensibly - the "autism spectrum."

    I am of the generation (age over 40) that, with extraordinarily few exceptions, had no recognition of our difficulties and certainly no "supports." Our lives have been very different than those of the twenty-somethings and even thirty-somethings who have been coddled and "therapied" and who are now fairly privileged. They are outspoken and, at least in some cases, are making for themselves fairly lucrative careers by 'enlightening' the world about the 'brighter' sides of autism.

    There is, about many of them, an arrogance that is ugly, and a disdain for the 'failures' of my generation that is even uglier. They have no idea of the paths we have trodden, and they do not care to know. There is an attitude among many of them that neither autism nor wisdom existed before they, and the only way most of them seem to care to respond to protests to the contrary are through mockery and stunning disrespect.

    Gosh, at least THEY have made "autism" kind of "cool."

    Except it isn't, exactly.

    Their idea of "advocacy," for example, is to perhaps publish a book (increasingly few of which are anywhere at all near original or profound) and thereby join the "autism" celebrity speaking circuit to pontificate about... advocacy.

    My idea of advocacy was to file a federal ADA lawsuit against the largest police department in Kansas in order to challenge the despicable ways they treated someone with autism...JUST BECAUSE IT WAS AUTISM.

    The people for whom I advocated mock that "advocacy" because, well, it was borne of PRINCIPLE, and not merely self-serving, self-promoting ambition that poses as some kind of heretofore unknown glory of "autism ability."

    Unlike them, I did not gain the world for myself, but I lost it - because the PRINCIPLE was worth the risk. What was won on PRINCIPLE was worth a million times what was lost materially.

    I still have my soul and my integrity, but because I do not garner book royalties and am not a household name, to the younger generation I am a nobody. I couldn't care less about that - except that the complete failure to see anything of value beyond their own opportunistic noses is a putrid example of "De-legitimization (which) is the process by which voices are silenced through removing their legitimacy."

    If I ain't money in their pocket, or at least more glitter on their name, then I ain't nothing.

    And that's something.

    I guess I lean at least slightly with the proposed DSM5 revisionists, in that I believe that whatever so grotesquely "de-legitimatizes" voices like mine probably is not at all autism like mine.

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    1. Advocates who refuse to acknowledge the difficulties and challenges that many Autistics face, the needs that many Autistics have, and the suffering and discrimination that many Autistics experience in a world not made for them are not good advocates. Advocates who refuse to acknowledge the wide range of experiences, needs, abilities, and challenges of the Autistic population are also not good advocates. Advocates who spend all of their time self-promoting instead of working to better other people's lives, effect systems change, or speak out for principle aren't even advocating. They're serving themselves.

      You are not a nobody to me, even though you wrote your comment as "anonymous." Anyone who dismisses you as a nobody because you're not an "autism author" or celebrity speaker isn't worth your time.

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    2. Thank you, Lydia.

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  5. I'm not going to be as eloquent as other people commenting here, but I'd like to agree that there is gross agism and de-legitimization of older Autistics even in the Autism community and it isn't right at all. I was diagnosed late and only after nearly killing myself. I've been given diagnoses and treatments that were inappropriate, accused of faking it, accused of being a wannabee, and even been homeless. The bullying does not stop when school does, and my world and my abilities grow smaller and more frightening, frustrating, and humiliating everyday while I see those around who are younger gain all the benefits. Don't get me wrong, I'm glad they are getting the help I didn't and that my nephew may have a chance at a better life than mine; but I'm sick of reading article after article that read as if Autism suddenly came on the scene 20 years ago and we older adults are aggressively dismissed with open hostility even in the Autism community. I'm in my 40s and I had a college degree I would have liked to use. I don't want the disability I'm not getting anyway. I want a chance at that American Dream and a career doing what I enjoy with legal protection from workplace bullying and discrimination that has cost me even the most menial job. I desperately would like to have a chance for therapy, education, a career, and maybe a little help at home, not "well, too bad for you; should've been born later so just shut up and go away." Thank you for your article; hopefully we older Autistic adults will stop being de-legitimatized, too.

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    1. Anon,
      The Asperger's Association of New England is very committed to adults. The LifeMAP (life skills) program is a big part of that, and a lot of their groups and conferences address adult issues (relationships, employment, etc). This is not much help if you're not near Boston, I realize, though there might be something on the website [aane.org] that works for you, or if you call the AANE they might have suggestions or info that could help regardless of where you live. (They take calls constantly -- ask for adult services.)
      I'm sorry about your experiences. It's true that adults are often overlooked.

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    2. To Anon: YES! I hear you.

      And so, too, does Lydia. Thanks again, Lydia.

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  6. I just found your blog. I think it is must reading for parents of children on the autism spectrum. I do have one question, point, issue...As an advocate for my children I am tired of being called an ableist, someone too ignorant to be able to speak for my children, understand them and support them in the world at large simply because I am not autistic. I think many in the autistic community discount a parent's love for their children and the fact that they would do anything in this world to help them.Our job is to ensure that there is a place in the world for our children. It is what we are fighting for on a daily basis. However, I believe there is a huge difference and a huge gap between accommodation and infantilization. That is generally when I get attacked...interested in your thoughts....

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    1. If anyone ever calls a parent ableist merely because the parent is non-Autistic, that person doesn't know what he or she is talking about. Anyone can be ableist, whether a non-Autistic parent or an Autistic adult, and simply being Autistic doesn't exempt a person from being an ableist, as being a non-Autistic parent doesn't automatically make a person an ableist. Non-Autistic parents have every right, and some might argue, the moral obligation or duty, to advocate for their children, to support their children, and to work tirelessly to understand their children better. The vast majority of non-Autistic parents of Autistic children love their children very much and genuinely want what is best for them. There is absolutely nothing wrong with that.

      What I'm not sure I understand, however, is what you mean by "infantilization?" I can't respond to this idea until I know what you mean.

      Thank you for your kind comment,

      Blessings and peace,
      Lydia

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    2. Actually I had to shut down comments on my blog for awhile when I wrote a piece about how I didn't like that new character on Glee this past year. That is when I was attacked as an ableist because I wrote that the character was insulting to those with aspergers and presented aspergeans as spoiled brats. I felt that with my children (in fact most aspergeans) having had such a hard time especially in school, it was inappropriate and uncalled for, that Glee used "aspergers" to make some innocuous point.Unlike the other characters with their issues on Glee, this particular character was presented as highly unsympathetic and the derision was well deserved.

      Infantilization is when they decide because you are autistic you cannot do XYZ. Or they think because you need some kind of support you are not capable of making decision about your life.
      There is a fine line in this world between being given support/accommodations and "society" believing you are not capable of running your own life.That is infantilization.In fact we face that fine line daily.

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    3. I'm sorry that happened to you. I haven't actually seen the show (ever), but from what I heard of their portrayal of Asperger's, I would have found it incredibly offensive myself, as an Autistic person. I know a large number of other Autistics who also found that incredibly offensive, so honestly I'm not sure why criticizing the show's portrayal of its Asperger's character would make people call you ableist.

      Re: infantilization, I absolutely agree with you. So does the general stance of the "autism rights movement." Those who promote the autism rights movement or neurodiversity generally want appropriate supports and services where necessary for each individual, as well as recognition and presumption of competence, self-determination, and ability to participate in and direct one's own affairs.

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  7. Just wanted to thank you for all that you do, but specifically, in this post, your explanation of how all Autistic people are Autistic, with varying degrees of disability vs. degrees of Autism, was very powerful to me. I am honored to parent twins with Autism who are very different in their disabilities and their diagnoses. I have struggled with this thought, but couldn't quite understand it fully, until I read your explanation. Thank you for helping me know my own children better.

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  8. I think the anxiety that non-autistic parents have about being sidelined is what I was getting at too. Which is not to say that Lydia was guilty of it (I didn't read it that way) but touching on these issues presses certain buttons.
    I second Rebel Mommy's comments re. the autism/degrees of disability distinction.
    I was thinking today about you not being considered autistic enough because you can write an eloquent blog post or whatever. It's a version of the response from some of my acquaintances when my son was a toddler: they assured me he couldn't be developmentally different or disabled because he was obviously smart. A hangover from the time when it was pretty much assumed all learning issues were about IQ. Autism has at least helped get people past that (the savant thing) but that's a stereotype too and not that helpful.

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  9. Re:
    "It is not possible to be more or less Autistic than someone else" —
    How isn't it?

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