Some thoughts on advocacy

In our society today, autistic children and adults are publicly represented almost exclusively by non-autistic advocates; sometimes parents or other friends/family, sometimes medical professionals, sometimes others with their own particular reasons. There are, of course, an increasing number of autistic autism advocates, but they have a hard time gaining acceptance as “legitimate” advocates.

In fact, there are several bloggers and commentators who decry the fact that the most vocal autistic autism advocates are those with Asperger’s Syndrome, and that these “high-functioning” autistics can’t (don’t) speak for those with classical (or “low-functioning”) autism. Which brought to mind something I read a couple of months ago in Richard Farson’s book Management of the Absurd:

Suppose, for example, I were to post this question: “If you were asked to predict the group in our society that is most likely to mount a liberation effort to end its oppression, would you have greater probability of success by picking the group for which you feel most sorry, or the one for which you feel least sorry?”

If you employed the unconventional, paradoxical approach, you would have picked the group for which you feel least sorry. Liberation movements usually arise from groups thought at the the time to be perfectly content. That is why they so often have taken society by surprise. Earlier generations, for example, complacently saw Negroes as being happy in their place. Women, before the 1960’s, were thought to be on a pedestal, adored and provided for by men. And today, in spite of the efforts of child advocates to call attention to the often oppressive conditions of childhood, children remain in the public mind as carefree, fully protected, joyful in their innocence.

Next question: “From where is the leadership of those liberation movements most likely to come – from those most oppressed by the conditions or those least oppressed?”

If you said least oppressed, you’re beginning to get the idea. The leaders come from outside or from the margins of these groups, seldom from the most oppressed segments. African-Americans were most helped at first by white abolitionists. Gloria Steinem is hardly the most oppressed woman in America. Children are represented almost solely by adult advocates.

From this description it makes a certain amount of sense that those in the medical profession (psychology is part of the medical profession, right?) and parents were some of the earliest and most visible advocates, and even more sense that those considered “high-functioning” would lead the way for autistics themselves. What it doesn’t explain, though, is why medical professionals, parents, and others are so reluctant to include autistics in their advocacy activities.

In a later section of the book Farson also discusses the fact that, in general, the person or group most affected by a problem is in the best position to determine a solution to that problem. Experts (or, in management terms, consultants) may sometimes be needed to help, but it is the “afflicted” that know best what they need.

If anyone who doesn’t believe that autistics can act as autism advocates is reading this, I’d love to hear why you believe that. And why you think that parents, doctors, or other “experts” are better advocates for autistics than are other autistics.

30 thoughts on “Some thoughts on advocacy

  1. Alex Plank

    The argument that certain autistics aren’t autistic enough is usually used by parents of individuals with autism. If their argument were valid (which it isn’t), then they also wouldn’t be autistic enough. Especially since they don’t have autism.

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  2. Brett Post author

    Alex, I agree completely. That’s kind of what I was getting at with my open questions to those who believe non-autistics are better advocates for autistics than autistics are.

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  3. Morgan

    I was just wondering this morning how many autistics my school district’s special education department employs. I think I’ll ask.

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  4. Ivan

    Actually, Aspergers autistics are NOT the only ones who are advocating for autistic rights. I bet YOU know that, but maybe you should write a piece and let other non-autistics know that, who are “decrying the fact that the only autistics wanting to advocate for themselves are Aspergers’ autistics.”

    Ballastexistenz, who blogs extensively on autism, autism rights, and things related, is most certainly NOT an aspie. Kassi isn’t an aspie. there are several others. But we also don’t really differentiate ourselves….into autistic vs. aspergers, because most self advocates don’t buy into the whole separation thing in the first place. We’re all on the same spectrum, and that’s all that really matters.

    Good post.

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  5. Brett Post author

    Ivan,

    Your are right. In fact, I considered not including the reference to Asperger’s at all, in large part due to the two bloggers you mention. But in the end it seemed the best (easiest?) way to make my point. I probably could have stated it better. For clarity’s sake, I didn’t state that these were “self-advocates”, and didn’t mean to imply that they were only interested in self-advocacy.

    Going back to Ballastexistenz and Kassie, the issue as I’ve seen it from those that dismiss them as advocates is that some people just don’t accept that they are autistic. After all, their reasoning goes, how can such an articulate, smart, well-spoken (in text) individual be (gasp!) autistic. That is, as you say, a topic for another post.

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  6. Brett Post author

    Ivan,

    On the topic of low- vs. high- functioning, I understand that autistics in general (I hate to speak in absolutes) don’t differentiate between the two. But the fact is that non-autistics do make that distinction, and for what they consider valid reasons.

    The biggest reason is probably as a way to understand the extent of services and support any given individual will need. In general, “high-functioning” autistics need “less” services and support than “low-functioning” autistics. Sadly, this does tend to also cultivate a perception of relative ‘worth’ (for lack of a better word).

    Part of my intent with this post was to try to get across the idea that advocacy can’t be done by any group in isolation. Non-autistics can’t effectively advocate for autistics without the input and help of the autistics they are advocating for. And autistics can’t successfully advocate for themselves without the help and support of non-autistics.

    Sometimes that means taking a step back from your ultimate goal, meeting the “other side” on their terms, and helping them see the light of what you are all about. In this case, accept that non-autistics do make a distinction between high- and low- functioning, and work within that construct to help them understand why their view falls short of reality and then help them understand what reality is.

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  7. Bonnie Sayers

    Good posting. My 13 year old uses the term mid functioning. He attends an autism day camp and tells me which ones he thinks are high, low or mid. His brother is nonverbal and this helps him identify others like his brother and to learn that there are some worse than him.

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  8. Club 166

    I’ve always wondered how someone could say that “high functioning” autistics couldn’t possibly know what their “low functioning” child needed, while they (who were presumably not on the autism spectrum at all) knew perfectly what those needs were. Huh???

    That’s like saying a Swedish-American farmer in Minnesota better understands the needs of a Sioux Indian from Minnesota better than a Plains Apache from Oklahoma. I think not.

    Certainly there are some personal family issues that a parent’s opinion will trump anyone from outside a family. But in matters of general advocacy, understanding of one’s point of view, and overall understanding of a person’s needs, certainly “fellow travelers” on the autism spectrum will be able to give a much deeper and broader understanding of all that is important.

    Joe

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  9. Amanda

    What I’ve heard is slightly more detailed (and as such, at least I believe it to be slightly more accurate):

    That liberation movements tend to be populated by people who have had more privilege at one point or another. That this can include people who started with less privilege and gained just enough privilege to notice what they were missing as a whole (such as becoming able to work, and running into on-the-job discrimination, or realizing how much other people in a situation they’d been in were being shut out of what this one person had gained), and/or who started with more privilege and lost it somehow.

    And that’s, tend to. There are no absolutes to it. But basically what you described was an oversimplification of a similar idea.

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  10. Amanda

    Another possibly relevant quote from, as it turns out, Jim Sinclair. 🙂

    Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

    1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

    2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:

    “When people tell me that I am “higher functioning” than the people they are talking about, I feel like they are telling me that I don’t have anything in common with other people with disabilities. It’s like they are putting me in a whole different category and saying that I don’t have any right to speak. It upsets me because I take it that they don’t want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven’t had the opportunities to experience different situations in life. ” (Kennedy, 1996)

    3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

    These strategies to undermine credibility are not new, nor are they limited to situations involving disability. Frederick Douglass was a nineteenth-century African American who escaped from slavery in 1838 and became a well-known abolitionist writer and speaker. In his 1855 autobiography My Bondage and My Freedom, he recalled that at the beginning of his career speaking to white audiences about the evils of slavery, he was presented as something of a curiosity. Most anti-slavery lecturers where white; lecturers who were themselves fugitive slaves were a rarity. As the novelty wore off, people began to doubt that he had ever been a slave. He was suspected of being an impostor because he was too educated and too well-spoken to fit prevailing stereotypes about the ignorance of slaves. He also expressed frustration with white abolitionists’ demand that he confine his speeches to simply recounting his personal experiences of slavery, and allow white people to elaborate on what they meant: “Give us the facts, we will take care of the philosophy.” Eventually Douglass stopped working for white abolitionists and started his own anti-slavery publication.

    All of which is from this article, which I’d encourage people to read for context.

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  11. Amanda

    And I should add, that with me and Kassi and Michelle and Jim Sinclair himself and others, a lot of people use both tactic #1 and #3.

    Sometimes the same people, oddly enough, swear up and down to both of them, practically in the same breath.

    i.e., we supposedly aren’t autistic, but we supposedly are too unempathetic, gullible, socially awkward, repetitive, uncommunicative, and/or poor communicators, to be taken seriously. Very weird head game, that one.

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  12. Amanda

    And another quote from the same article by Jim Sinclair (see above), and then I’ll finally shut up.

    When, contrary to expectations, we did begin organizing ourselves and announced the establishment of ANI, ASA continued to ignore the announcements we repeatedly submitted for inclusion in the newsletter. But now there did begin to be some acknowledgment of the existence of autistic people trying to self-advocate, in the form of rumors started by some ASA Board members to the effect that I was not really autistic. (This despite of the fact that my records had been reviewed by two psychologists who were members of the ASA professional advisory board, and both had stated–one of them under oath at a rehabilitation services hearing–that I am indeed autistic.) In a clear attempt to undermine our group cohesion, Kathy and some other autistic adults were directly “warned” that I was not what I claimed to be. Meanwhile, Donna was encountering similar denunciations as her book began to receive international attention.

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  13. Brett Post author

    Amanda,

    Don’t “shut up” on my account, I always learn something when you post.

    In fact, Farson does include a section in his book about the phenomenon you talk about in comment #12, namely that it is the people that “get a taste” of what they are missing that are the ones that tend to demand even more.

    I think that as parents become more aware of what is possible for their autistic children, and pass those higher expectations on, as these children become adults they will know what is possible and demand it for themselves (low-, mid-, or high-functioning).

    The trick is getting parents to understand. Because once they understand, they will be the members of the “empowered” group that influence the rest of that group.

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  14. Amanda

    Yes, in fact that’s something I tell parents — that even if their child doesn’t communicate by traditional means, that if they’re treated like an equal, they’re more likely to in various ways demand that others continue to treat them like an equal, and to respond negatively to being treated as inferior.

    And that basically, parents are the first people who (ought to) teach self-advocacy skills to their children, and that self-advocacy skills do not begin and end with expressive language skills, although obviously language can help. But that they need to be preparing in as many ways as possible, for their children to have an awareness of respectful treatment as the standard to measure everything else against.

    Which is something that it does not take high degrees of skill to learn — as Dave Hingsburger once put it, “Respect is addictive.” He gave an example as (with a severely physically and cognitively disabled woman) always lifting her in a manner that indicated respect and personhood and all that. And that then if someone were to just grab at her without any warning, she would then rear back and stiffen up and possibly scream and in general protest this treatment. And that then, if that person was a potential abuser, they would think twice about what an easy target she’d make.

    One thing a lot of people (parents and otherwise) don’t understand is that self-advocacy is not just writing articles and giving speeches, there are a huge number of other aspects to it too. And it’s something anyone can potentially do if they can do anything at all. (And you can’t get an autism diagnosis without being able to do anything at all.)

    Another thing that needs to happen within the autistic community, is that if we don’t want people using that crap (like described above) against us, we shouldn’t use it against other people.

    I once saw a fairly prominent (at the time) autistic self-advocate publicly ask someone else if they were “really autistic,” because that person didn’t like being autistic. I’ve seen another prominent self-advocate (who doesn’t happen to like being autistic), claim that only people with Asperger’s, like being autistic.

    It’s not okay when other people do it to us, and it’s not okay when we do it to each other. It won’t kill anyone to acknowledge that our opinions on a huge variety of things vary.

    And also that our experiences vary. But people should be very wary of conflating experiences with opinions. I can experience something nearly identically to someone else, and yet have a completely different opinion about it than they do. And I can experience something very differently than someone else, but have the same opinions. This is why I get really wary of sentence constructions that run something like, “Autism is a spectrum and so are opinions about it.” It subtly creates a parallel in people’s minds, that doesn’t exist in reality.

    Another thing that people need to understand, regarding privilege (and it’s kind of a tangent, but kind of not, too, hopefully that makes sense) is why it is that autistic people are sometimes wary of non-autistic allies.

    Allies are immensely important.

    At the same time, if you are not the one directly experiencing being autistic and what that means in our society, it’s often very easy to go back to more comfortable ground. Even if you greatly love someone who is autistic, it can still happen.

    And a lot of us have seen it happen. A lot of us have experienced what feels to us on a gut level like betrayal from people we once thought of as allies, and once trusted.

    So when someone we thought of as an ally starts, like you did, seeming to say or support things that are very elementary mistakes about the autistic self-advocacy movement (as in, things that even if you disagreed with us would be plainly untrue), little warning lights start flashing in people’s heads.

    And I think one thing allies have to realize is that this element of lack of trust will always be there to either a large or small extent. We’ll wonder when people will get tired of fighting against the flow, and exercise the privilege they do have, to ignore it all. And it’s way easier to do that, around autism-related stuff, when you’re not autistic. Not impossible if you’re autistic, just harder. And since we’re sometimes tempted to do that, but can’t (or can’t easily)… well it’s easy for us to see why someone could take that option if they had the option. And even people who greatly love an autistic person, generally have that option more than an autistic person does.

    And a lot of us are aware of what I just said, whether we have the words for it or not. And that’s, I think, why you’ve gotten some of the response you have. It’s not because we’re a bunch of fundamentalists who’re intolerant of other viewpoints, it’s because we’re steeling ourselves for something we’ve seen before, and have good reason to believe possible again even among people who’re really dedicated.

    I once watched a mother who had been heavily involved in this stuff since long before I was involved at all, make a gradual shift over several years.

    It started when she realized, as far as I could tell, that autistic people were flawed and human and could not be put onto pedestals. That we could make mistakes, involving her, and involving her child. (Having seen this lead to horrible things is one reason I have an instant aversion to anyone putting me on a pedestal, I know how far there is to fall.)

    She also discovered that she did not like every autistic person on the face of the planet. Dave Hingsburger once said “If you like everyone with a disability it means you’re a bigot, because it means you can’t see individual differences.” It’s very true.

    She started saying the ones she didn’t like, because of their personalities, weren’t autistic. Even though, as far as I could tell, they were autistic and being total jerks to her. Later she even started believing that people were conspiring against her.

    And her disillusionment with individual people eventually ended up meaning disillusionment with anything said individual people happened to be involved with.

    She started talking more and more about vaccine damage, of all things.

    She also started behaving nastily towards just about everyone.

    And then one day she just vanished, none of us have heard from her since.

    This wasn’t someone with a casual involvement in stuff, either.

    Another person, similarly once heavily involved as an ally, made similar gradual changes, and is now an outspoken opponent of nearly all autistic self-advocacy as far as I can tell. Despite the fact that she was involved deeply and long enough to know better, she spreads the most ridiculous, and elementary, false generalizations about us. She did not disappear, she just became actively vicious and stayed that way, and returned with a vengeance to promoting the most horrible and false stereotypes she can.

    (What strikes me as weird is that so many times, the people doing this think they can no longer be friends with people who hold opposing views. It’d be one thing to change one’s mind, but this isn’t just changing one’s mind, it goes beyond that.)

    Because of most of us having had this happen a lot, sometimes with people we really thought were close friends, we tense up a little when we think we see someone doing something that reminds us of that.

    And it’s not just an autism thing, it’s a pattern that happens around nearly any kind of privilege imaginable. People who can’t remove ourselves from certain situations easily, even if we want to, will often fear that those who can remove themselves easily, will.

    And those who can remove themselves easily, also need to realize that this mistrust comes from experience, not just from some kind of error or offensiveness on the part of the people not trusting them. (And every single person anywhere can be on both sides of this dynamic, so it’s not an us against them thing, it’s just how privilege and advantage tend to play out in these situations.)

    None of this is to say that there’s some sort of One True Specific Position that everyone needs to take identically to each other. It’s broader than that, and more complicated, I just can’t explain all the nuances at 7:30 in the morning. Hopefully I’ve thrown enough of a framework out there to make sense of the rest.

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  15. Brett Post author

    Amanda,

    Having never really been in a group or other situation where I had to really “fight” for myself, I’ve not had the experiences you mention. I appreciate your candid discussion of them, and will keep it in mind in the future. It was not my intent to alienate anyone, and it is definitely not my intent to “abandon” the cause.

    I’m just trying to figure out how best to get others like me (non-autistic parent of an autistic child) to understand what is possible for their autistic child, in particular, and autistics in general.

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  16. Arthur Golden

    I just read the above comments, after I posted my comment #30 on the blog entry “Autism, neurodiversity, and parenting” of 18-Jul-08.

    While I accept the sincerity of Amanda in what she wrote, I am really curious about the viewpoint of the people about whom she makes negative comments. It has been several years since Amanda expressed a negative viewpoint about a statement written by my son Ben (on being allowed to choose full support Facilitated Communication) and when I disagreed with her, I do not believe she provided an adequate explanation of her viewpoint.

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  17. Amanda

    I can’t answer for my views from years ago, because a lot of things have changed since then. I’ll try to explain why, but bear with me on this because it’ll eventually get to the point but it meanders a bit on the way there.

    Between the time I talked to you in the past and the time I talked to you now, I have moved cross-country, over 3000 miles away from where I used to live.

    I used to be in more of a state of hypervigilance, general terror, and hair-trigger rage than I even realized, because I was immersed in it.

    When I moved, that alone created a huge difference in me. I immediately stopped having nightmares. My flashbacks are down to a small number. I am, overall, calmer. There are fewer things there to remind me of the intense and prolonged abuse that happened where I used to live. That is one reason I moved here — I visited a friend here and felt a sense of freedom that I never felt where I actually lived.

    My PTSD symptoms are therefore at a minimum here. The odd nightmare or flashback or fearfulness happens, but it’s far rarer. The emotional numbness I used to feel has begun to thaw. My judgment and actions are far less colored by my past negative experiences. I’ll never say I’m unaffected, but I’m less affected, and in less of a bad way. I’ve even begun to see the better and more useful side of what those experiences have taught me, rather than just the negative and destructive parts.

    I have also had the opportunity to stand up for my rights and actually succeed in getting somewhere with that. When a case manager demanded I be put in residential care, I filed a complaint. And I won. I got a new, far more competent and respectful, case manager. This taught me, as nothing had managed to teach me before, that I could have an influence on bad situations, that I actually had some recourse when people pulled power games on me. Prior to that I still had it ingrained in my head that if I did something to stand up for myself in these situations, I could get myself killed at worst and abused or neglected at best. I had no idea that I could do anything to change them in my favor, until I actually did.

    Additionally, the slow progression of my movement disorder (more complex than movement, but this is shorthand) has… well… slowly progressed. As a result of that and some assorted health problems, I have had a drastic increase in the amount of assistance I have required.

    And that assistance has made it clear how much getting assistance in the right areas, allow me to function better in seemingly unrelated areas. I had some understanding of this when I talked to you about these matters, but not enough to apply it to your son’s situation. I am fairly sure I would respond differently now that I am aware how much difference the proper amount of assistance makes, even in some areas where something was possible, yet so difficult that it took all my energy away from other things important to survival.

    Also, recall that I was 23 or under when I had most of my conflicts with you. The human brain generally becomes significantly more emotionally mature — less extreme and volatile — around 25, from what I have heard.

    Perhaps you’ve had similar experiences. Certainly mine has seemed to do so. I have also noticed that things in life in general are a lot more detailed, nuanced, and tricky to figure out than I once supposed. It’s not that I saw purely in black and white before, but that there are more shades of grey than the ones I could see then. And more uncertainty, given how comparatively little of the world can be known by any person. I’m often, even as I give various viewpoints, uncertain as to how much I can really discern about a given situation.

    At any rate, with all these changes taken together, I am fairly sure that I would not see a problem with your son wanting more support to type. Especially given that I’ve now experienced drastically increased abilities in many areas with increased support in other things.

    And I can answer for that opinion just fine. Ask me why I believe it and I will tell you, in detail. But I also don’t think it’s necessary for me to agree with you, in order to do what you need to do for your son. I just do happen to agree with you.

    But I can’t tell you why I believed differently in the past. To claim to be able to do so, would be dishonest on my part. I would appreciate if you did not ask me, thereby encouraging me to dishonestly fabricate an answer that seems to fit, but that would not actually be your answer. I can only answer for what I believe now. And I’m not really interested in even attempting to go over the same old ground over and over and over again.

    I am, however, sorry that I once believed that using increased support was a bad thing. Consider that my open and public apology to you on that matter.

    As for people I speak negatively of, they don’t resemble you at all, nor do I really bear them any ill will.

    As I mentioned before, I don’t think I have to agree with someone on everything for them to be my friend. I have friends who otherwise hold all the beliefs of the two people I mentioned.

    I also have a terrible time holding grudges, or bearing malice for anyone, and a hard time understanding the workings of people who do. Even people who have greatly wronged me and those I care about, for no good reason at all, I can’t bring myself to hate, nor even hold long-term grudges against personally. And the two people I have mentioned in these comments, have not done anything near as drastic as that.

    At any rate, the people I mention, are people I would like to have remained friends with. That is one reason I have anonymized names and details: in using these details to make a point, I don’t want harm to come to the particular people because of it, and I don’t want people to look down on them because of what I said. I only wanted to illustrate why there can be mistrust out there. And as I said, these are people who I would have no problem being friends with, disagreements and all, if they weren’t actively hostile (by which I mean more than simple disagreement, and into name-calling and other true nastiness) towards me and anyone like me. Your actions do not resemble theirs in the slightest, and your past disagreements with me have nothing to do with theirs.

    And I would appreciate not having to dredge up those past disagreements anymore. It’s pointless, since I can’t honestly argue my old positions anymore. I imagine that you are someone who no longer agrees with everything you believed in your early twenties. People grow and change. I have done so as well.

    I’d appreciate that be acknowledged and moved on. I don’t want to have a conversation that requires me either explaining my past beliefs, or explaining the differences between past and present beliefs. I’d also appreciate some acknowledgment that it’s somewhat unfair to act as if someone’s judgment at 28 ought to be assessed based on their judgment when at or under the age of 23, especially when such a drastic change of circumstances as has occurred.

    I would like to engage only in current conversations, not resurrections of past ones. I would also like to be able to engage in current conversations without being judged by conversations I had 5 or 6 years ago in an entirely different set of circumstances. Please have some respect for this.

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  18. Arthur Golden

    To: Amanda
    From: Arthur Golden

    Thanks for the detailed explanation.

    I look forward to having open discussions with you about your current positions, which include ideas that I strongly agree with and wish to understand better.

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  19. Harold L Doherty

    Communication is one of the most important aspects of human life.

    Those like Alex Plank and Amanda Baggs who have commented here do not have the same communication challenges as my son. They do not share with him common experiences because of this fact. They have no actual first hand knowledge of his communication and other challenges.

    As his father I have raised my son, lived with him, driven him to the hospital, helped him through illness, walked him to school, coached him to be “gentle” when he holds my “daddy beard face” in his hands and suddenly becomes rough and pinching. toilet trained him at an early age, using the sound evidence based effecive principles of ABA, fought for accommodation for him in the school system, and thankfully for ABA services provided by properly trained service providers.

    Mr Plank does not understand that parents, in addition to actually knowing the children they are advocating for, also have a legal, and a moral, duty to advocate for their children. Ms Baggs in comment 17 talks condescendingly about what she tells parents about how their children communicate and to teach them self advocacy. Most parents already know these things and know much more about their own child than she does. They also know the realities and frustrations of trying to help their children do these things.

    Aspergers and Retts are pervasive developmental disorders. They are classified along with the other PDD’s because of some fundamental similarities. Even as diagnoses it is recognized that they are not identical. And Aspergers was not always classified on the same spectrum as Autistic Disorder.

    How then does Mr Plank, with Aspergers, college student, understand the realities of my son, with limited communication skills and understanding of the world? Does Mr Plank have to be supervised 24/7 so that he does not wander into traffic, get into a stranger’s vehicle, or simply wander off to an unknown fate?

    Ms Baggs once attended a college for gifted students and spoke with educators and medical professionals. Does she really pretend to have the same life experience and knowledge as my 12 year old son for whom “Maya and Miguel” and Dr.Seuss are his primary fare?

    It would be helpful, if these internet “autism” advocates recognized the limitations of their personal experiences and stopped generalizing from those experiences to such a widely varying range of other people with different life challenges then them. Mr Plank does not even speak for all Aspergers persons either.

    Our autism society board had the benefit of participation by an adult gentleman with Aspergers who worked with us for many years. He also founded a separate Aspergers support group, addressed the Canadian Senate Committee examining autism treatment issues in Canada, is gainfully employed and is a regular speaker at Toastmasters events. He is admired and respected by everyone in our society including me. He supported our efforts to help our children including our successful efforts to obtain ABA interventions for our children.

    This gentleman also shared with us HIS experiences which we all found very moving. But he NEVER presumed to TELL us what OUR children were feeling or communicating. And he never presumed to know more about our children and what was best for them than we did.

    If the “neurodiversity” or “autism” rights movement wants to be taken seriously by more than a handful of parents its leaders will have to recognize that parents know more about their children as individuals than they do, are quite capable of understanding the professional literature on autism and autism interventions and must advocate for their children.

    Like it or not, not all autistic people can “self advocate” and parents will fight for their children who can not fight for themselves. My son is 12. He will not be living an independent life. And it is me as his father who has, and will advocate for him, because he CAN’T. And Ms Baggs and Mr Plank will never be there for him. I will for as long as I can. And I will not seek anyone’s permission to do so.

    Reply
  20. Brett Post author

    Harold,

    Thanks for your detailed response. I know that you’ve written much of this elsewhere, in different contexts, but seeing it all together in one flowing argument has helped me better understand your position.

    As the parent of an autistic son, I share your feelings that I (and my wife, and my other son) know my son better than any “stranger” ever could and that it is my responsibility to ensure that he gets “the best” as he grows up. I am interested in hearing from other parents who’ve shared my experience, or adult autistics who can possibly give me some insight into what my son may be experiencing, but when it comes down to it I am the one that makes the decision on what is “best” for him. Without a doubt, many people will disagree with my definition of “best”. (As the parent of a non-autistic son as well, I should add that I take the same approach with him.)

    I am one of those “handful of parents” you mention that takes the neurodiversity and autism rights movement seriously. Though I don’t always agree with their approach and methods (or, as you bring up, the occasional disregard for the parent’s role), I’ve found that the members of those groups have much to offer me as a parent as I try to do what I think is best for my son. And I’d like to think that I’m helping them to better understand how a parent feels, but I’m not too sure how successful I’ve been in that.

    I also like to think that people like Alex Plank and Amanda Baggs give us a glimpse of what is possible, even if it doesn’t ever seem likely. My son is now 17. If you had told me 5 years ago, when he was your son’s age, that my son would be a junior at a public high school, taking regular classes and keeping just under a “B” average in his classes, I would have laughed at you. And yet, that is the reality today. Live in the real world, but don’t let today dampen your hopes for tomorrow.

    Reply
  21. Arthur Golden

    To Brett and Harold:

    As the father of a 36 year-old son, who appears to have been “lower functioning” than either of your sons at age 12, although every person is unique and none of us have all the answers, I do think that we parents should carefully consider all of the comments of Amanda.

    Despite the individual differences, Amanda has actual experience, especially about adults, that we should all be open to consider. Of course, my own experience may be more comparable to that of both of you as parents and it might be easier for me to discuss future planning with you (realizing that I pay attention to the comments of Amanda and I will take her information into consideration).

    Arthur Golden of Jerusalem Israel

    Reply
  22. Amanda

    Condescension is something that people frequently read into the communication style of autistic people who use words in one form or another.

    Often it comes from the question of how much information to give.

    Give too little, and we are seen as infuriating, because people have no clue what we’re talking about.

    Give too much, and we are seen as condescending, because apparently telling people things they already know has negative connotations to most people.

    I wonder how Harold Doherty would explain, then, that when I give talks like the ones I describe above, the vast majority of parents thank me afterwards.

    I also wonder how he would explain the time that I gave a talk in a room full of parents, and one young autistic boy. He spent most of the time, running around the room and appearing (to the eyes of most non-autistic people anyway) oblivious, and this was apparently what he normally did at these meetings.

    But that day the more he heard the talk, the more he came up and stood right in front of me staring straight at my fingers and the keyboard.

    Or the other boy who had severe trouble with spoken communication, and could clearly mostly do echo, but when he saw my communication device he came running up to me, saw the on-screen keyboard, slowly typed his name, and gave me a big hug.

    Some parents have told me that I have completely changed the way they see their children’s abilities, and the way that they will approach teaching their children.

    I am totally honest that my experience is not everyone’s experience, but I also do not draw only on my own experiences when I talk to people. I describe the experiences of many other people I have known, and emphasize that there is a good deal of variety among autistic people.

    There’s a flipside to that too though. There is also a lot of commonality among autistic people, and that commonality can cut across all apparent divisions between us. Differences that appear massive to other people, can be only a hair’s breadth to those of us who know what we’re looking at. And people who appear (to eyes accustomed to looking in a certain manner) very similar to each other, can have differences so vast you wonder (if you know how to look) why anyone would think they had much in common.

    Harold paints very deft pictures of people, drawing on traditional stereotypes and going very little past them. My history is in some ways different from people who have never spoken, but it is equally different from people who have always spoken. He has been made aware of this, but chooses to weave the stereotypically “normal” bits into a picture very different than the reality, so as to not have to actually listen to what I have to say. It’s easy to manipulate people’s stereotypes, because you only have to say one or two words, and it evokes images in their minds that they fill in with information that could as easily be false as true.

    Harold cares greatly that I spoke at college, and that I went to college at all.

    He doesn’t care how much of that speech was genuinely communicative.

    He doesn’t care about the misunderstandings that sent me there in the first place.

    He doesn’t care that I spent a good deal of my time here abused for being unable to speak for long chunks of time.

    He doesn’t care that I spent my first semester sleeping under my desk to avoid my roommate, who I barely spoke to even though we were sharing a small room.

    He doesn’t care that people bullied me for my poor hygiene and other such problems.

    He doesn’t care that people at times had to physically lead me different places on campus because of shutdowns.

    He doesn’t care that a couple of RAs found me shaking on the floor after a meltdown, squealing and unable to speak, and that they were on the verge of reporting me for my conduct, when my neuropsychologist wrote a letter explaining that I had a neurological disorder.

    He doesn’t care that I could barely understand the material I was taught, if at all.

    He doesn’t care how many different students tried to physically grab me to keep me from slamming my head on things.

    He doesn’t care that I often slowed down or completely stopped moving.

    He doesn’t care that I got disciplined by the college for social misunderstandings so major that I was reported for it.

    He doesn’t care that so many of the students played elaborate games with my mind, including convincing me that I was ‘crazy’ or needed to act ‘crazy’ (and I saw them go to elaborate lengths to do this to other people they considered vulnerable as well — and people they knew they could discredit easily as dumb or crazy if anyone ever reported what they did), that the psychiatrist who diagnosed me with autism had to write explicitly as a goal, that my parents had to keep me out of contact with anyone from the college at all.

    And he probably would hate the fact that I’m not talking anywhere here about things I was doing under the influence of drugs, just things that were normal aspects of my neurological status at the time, or of other people’s reactions to (and exploitations of) it.

    Instead he uses speech at any time in the person’s life as an indicator of everything there is to know about an autistic person’s life experiences.

    Nothing else matters to him.

    Not even the fact that a large minority of autistic people — I have heard figures of anywhere from.. something like 17% to 38% give or take 2% since I don’t have it in front of me — lose abilities, or appear to lose them, throughout adolescence, like I did. Which are figures so high, that I think it would be in people’s best interests to know about them, even if it differs from their specific experience.

    Most autistic people are not like me. Most autistic people are not like Harold’s son. Most autistic people are not like Brett’s son. And most autistic people are not like Arthur’s son. You can fill in the blank at the end of the sentence with the name of any autistic person on the planet.

    At the same time, we all have things in common. Some more than others. And the most common assumptions about our commonalities, based on small aspects of our outward appearances, tend not to work very well in reality.

    And my experiences with most parents of autistic children, is that they often are at a loss to understand how to relate to their children, even if they mean really well. They are eager to learn. And they are not hostile to me nor do they consider me condescending. I inevitably end up confirming some of what they already know, but then I build on it.

    Sometimes with my experiences, sometimes with the experiences of the hundreds of other autistic people I have known. Often giving ten different possible answers to one question, letting them decide which is best.

    Many of them are the first to admit how much they don’t know about how to communicate with autistic people, or why autistic people do various things.

    And while it’s impossible to tell people only what they know and never what they don’t know, there’s always one piece or another of what I talk about that they didn’t know, or that is a new angle on what they did know.

    I am pretty certain that I would not get the reactions that I normally get from both parents and their children, if I were as condescending and out of touch as Harold suggests.

    Additionally, I have to, like many autistic adults, deal with the fallout of views like Harold’s — autistic adults that nobody will listen to about their genuine problems functioning in the world, just because they can speak, or their IQ as measured at one point in their life was too high (mine was only ‘gifted’ once, out of three times testing, and only the first time, with some odd things going on with the tester), or other things that people have learned by this exact deft waving-around of stereotypes, to ignore and not notice at all.

    I don’t think it’s necessary to sacrifice the lives of the adults so that the children will get more attention, but that’s what happens when “you are not like my child” becomes public policy, when people with certain histories are regarded as not disabled enough for services regardless of their present needs. I am talking right now to a man with an Asperger diagnosis who is homeless again, has medical conditions that could lead to death in this situation, and who is doing anything about that? Oh yeah, he talks so he’s not autistic enough to need services, or something. I hope someone gives him a home before he dies, he’s too far away for me to help in any other way than providing him potential contacts.

    Not to mention the many autistic women who’ve had to turn to allowing other people to use their bodies in order to secure money, food, or housing, because they can’t get jobs, and, oh yeah, they talk, or once talked, or something.

    The people like I was when I was in college, and even as an adult, who cannot communicate well enough to even point out the vast majority of medical conditions they might have. But speech or typing skills mask that communication difficulty, among many many others.

    And all of these are situations where it can be life and death for autistic people who can speak at least some of the time in at least sime manner, to be recognized as having a huge amount of the same problems as other autistic people, up to and including severe difficulties communicating vital information.

    And as I say this, this is life and death, and life and death matters to me a good deal. The quote from Laura Tisoncik comes to mind, “I, after all, have to live with the stereotypes you are trying to build.” And people live or die by the stereotype that a speaking (in any form whatsoever) autistic person has none of the problems, or can acquire none of the problems, of a non-speaking one. It is astounding that as many of us survive as actually do, given the living conditions we’re often left in.

    And because of it being life and death I can’t ignore the fact that we are being severely written off here, any of us who don’t suit someone else’s entirely political agenda. I don’t care if the guy who’s on the streets right now thinks anything or nothing about autism, I want him to have a home and the medical care he needs to survive.

    And when I’m writing these things, and responding to these things, I cannot keep the existence of these hundreds, thousands of people out of my mind, can’t shut out the sense of “All these people in so much danger on a day to day basis, and I am supposed to sit back and watch their struggles and their existence itself erased and dismissed in such a cavalier manner?”

    And I can’t. I can’t shut out the existence of the autistic adults I mention, the existence of their very real combinations of abilities and problems, any more than I can shut out the existence of any other autistic people. And I can’t make them neat and tidy to fit Harold’s conception of reality any more than I can make myself neat and tidy enough to fit into his conception of reality.

    It doesn’t work like that. The stereotypes you wave around end up like a fog obscuring all of us from view, and by the time the fog clears more people are in more trouble in part because nobody could even see them under all the stereotypes.

    It would be too bad to view it as impossible to learn thing from people who are different, or who have different views. I learn a lot all the time from autistic people, and parents, not to mention those who are both, who disagree with me in regards to causes, cures, treatment, and whatnot. Not only learn, but many of them are people I really like and would never want to decide to dislike, belittle, and dismiss just because they want a cure for themselves or their children, or disagree on some other point.

    And I’m still here, and all that fog and fireworks that attempts to obscure me, has nothing to do with me at all. All the other autistic people are still here too, except for those who have died from abuse or neglect in the meantime. And the awareness that all of us — among the rest of the world, of course — exist, is where I am fundamentally coming from in everything that I do.

    I can’t force myself to only care about one person. And I certainly can’t force myself to become so focused on one that I actually warp and distort all the others to suit the needs I perceive that one person as having.

    And I can’t shut my awareness off for anyone. It pervades everything I do. And I wish at times that I could somehow just transfer to them the awareness of the existence of so many people who have nothing to do with the stereotype-waving that’s going on in anyone’s head, here or elsewhere.

    Reply
  23. Arthur Golden

    Amanda,

    In your last comment, I think there are several times you could have used the term “catatonia” but did not. You have publicly stated that you have a diagnosis of catatonia.

    Until a week ago, I was unaware of the recent information connecting autism and catatonia. But thanks to Michelle Dawson, I had some links to follow and now I feel that catatonia may be very relevant to my own son Ben and many others with autism that I personally know, even though none of them have a diagnosis of catatonia. Although Michelle Dawson is largely dismissive of the importance of this connection and I doubt that most parents are informed about this matter (including Harold and Brett), I now think it is extremely important that catatonia information be made available to anyone involved with autism.

    Arthur Golden of Jerusalem Israel

    Reply
  24. Amanda

    It’s written in several different ways in my diagnostic records, actually, and catatonia is only one of them (others are explicit descriptions of specific actions or inactions as the case may be, or else ‘central nervous system disorder’, ‘movement disorder’, ‘autism-related movement disorder’, or ‘parkinson-like movement disorder’, probably some others I’m forgetting). I tend to mix them around myself.

    I am also still continually unsure of the term’s applicability, and greatly aware of the fact that seemingly the biggest promoter of the term’s use in autistic people has used it to justify electroshock, a ‘treatment’ that has variously erased the memory, caused excruciating pain, and nearly killed, many people I happen to know who are autistic and diagnosed with this movement disorder. There is virtually no other term used for this that would have allowed him to get away with this, and after noticing that I have probably used it less often.

    Additionally, I am sometimes uncomfortable with separating these things out and giving them a different label, which is why I am often likely to describe things directly rather than use a shorthand that confuses most people more than it enlightens them.

    (It confuses people because they associate it only and entirely with a complete lack of movement — something that I happen to know not to be the case, because I’ve actually read the literature on it, but not a lot of people are aware of this — the term in casual conversation means ‘unmoving’.)

    I’m also uncertain whether it is a useful term or whether it is, like many terms from its era, a collection of things that someone or another thought were related, but might well not be. And in the case of catatonia among others, originated in neurology but was hijacked by psychiatry and hasn’t made its way out again as thoroughly as, say, epilepsy has.

    I have also noticed that Tony Attwood noted somewhere that, whatever this is occurring in autistic people, it is like both catatonia and parkinsonism, but isn’t quite the same as either one. I haven’t figured out what references he used to come to that conclusion though.

    I actually didn’t even think of the term at all in writing the above, though. And I can’t easily and naturally separate it out in my mind from a number of non-motor things about myself. (Which I noticed some people interpret as the whole thing just being an example of autism, and others sometimes interpret as autism being an example of catatonia.) I was mostly thinking in terms of the level of overload going on at the time, which is how I remember that whole time in my life, just constant overload and constant pressure to force myself to function through more and more shutdown.

    Speaking of movement-related stuff, though — Arthur, did you ever read what I wrote in my blog at one point about the fact that when objectively tested at MIT, my stress levels rise quite noticeably every time I make a voluntary movement? (Involuntary and triggered movements both don’t affect it.) Which was the first external proof I had for the difficulty of even the movements I can sometimes “make look easy” through extreme effort (it was actually measured on a good day in terms of motor skills, and by accident — they at first thought it was a malfunction in the machine, and then got curious and ran me through a bunch of movements, after checking on themselves to make sure it was wired up correctly). I wonder what it would look like in people, like your son, whose normal level of difficulty with movement is even more than mine. (Since it hasn’t to my knowledge been noticed in anyone but me, I can’t say for sure what it’s related to, but it does interest me.)

    Reply
  25. Arthur Golden

    Amanda,

    Thank you for your detailed response.

    You have reinforced my belief about the importance of the issue of catatonia in connection with autism.

    At this point in time, there are probably very few people with much information about this issue, and among the readers of this blog, I think it is only you and I.

    I would like to pursue this matter, so could I send a private email on this issue of catatonia in autism?

    Art

    Reply

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