9.13.2011

On Parents Listening to Self-Advocates

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
-
Winston Churchill

Sara thought for a moment. She saw she had made a mistake.
-Frances Hodgsen Burnett, A Little Princess

You'd think we parents of kids with special needs -- righteous avengers that we are -- would be extra-invested in listening to the self-advocates who share our children's experiences, who in many cases used to be our children. You'd think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I'd written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You'd think that, knowing how many times even well-meaning people have dismissed my son's needs or spoken to him as though he was an obedient puppy, I'd understand how self-advocates might have very little patience for parents who patronize or disregard them.

But, I often don't get it, as I am a neurotypical parent, not a self-advocate. And when I advocate for my ten-year-old son, I sometimes overstep advocacy boundaries, or am not inclusive enough -- talking about "children with autism," for instance, when I really mean "people with autism."

If self-advocates let me know that my efforts are misguided, that is when I have a choice. I can react instantly and defend my intentions -- or I can take a step back, and try to understand why a self-advocate would take offense at something that I worked so hard on, and meant so well by. I can listen to what they are saying, rather than how they are saying it (not always easy). I can try to determine exactly what I have done that is hurtful, and ask how I can avoid doing it again. And I can remind myself that this process, this learning does not equal total and complete agreement (nor should it; if we are truly talking about a meeting of minds).

It's not easy. I am a defensive person, I have a hard time taking criticism. I also loathe conflict and want everyone to get along. Plus, I live on the Internet where instant reactions are not just possible but expected. So, instead of listening and acknowledging, instead of giving myself processing time, instead of asking questions -- I too often react on my terms. According to my expectations of civil disagreement, and my expectations of trying to understand each other's contexts.

Which is ironic, really, when you consider that I am most often engaging with Autistic self-advocates. Even those not terribly familiar with autism usually know the stereotypes of frankness, and of challenges with understanding perspectives not personally experienced. I should know that demanding diplomacy, and asking to understand each others' contexts is not exactly fair in a neurodiverse environment. As Nomatissima wrote in I’ve Earned My Anger: Policing and Dismissing Autistic Emotions:
The fact that my emotions are deemed “not appropriate” for the situation makes it all the more infuriating. It may not seem like a legitimate response to a neurotypical, but an autistic perspective is going to take certain things a lot more seriously, and will more rapidly notice when something isn’t right in a situation related to disablism. It’s not always going to be pretty, and we’re not always going to be able to sum it up in tidy little speeches. That’s okay. It should just show how committed we are to this, and what it means for us, how profoundly we care about this topic. It’s not a matter of weakness, lack of manners, or being “emotionally incontinent” (Nice imagery there, eh?)
The autism stereotypes I cited above are not universal among the diverse community of Autistic self-advocates, of course. Some folks with autism are fully committed to civil disagreement. Others have clarified that it is unfair for we who rely on the (problematic) concept of theory of mind -- on being able to anticipate how others might feel and how our actions would affect them -- to expect accommodation from Autistics. As spunkykitty wrote on Rachel Cohen-Rottenberg's Autism and Empathy project:
But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.
I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic -- but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.
If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:
My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.
It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?

Some of the most difficult exchanges happen when self-advocates criticize parents, and parents respond that self-advocates are not like their kids and cannot speak for them. This make my conflict-averse head spin. Because here's the thing: on the small scale, the personal experiences within the disability community may differ, but on the larger scale, and in terms of advocacy needs, our kids and self-advocates have more in common than not. Making comparisons isn't helpful, not when both experiences are legitimate -- and especially when those comparisons are tangents, irrelevant to the argument that triggered them in the first place.

The recent introduction of a medical code for wandering is a stark example in which both parent and self-advocates concerns are legitimate. Wandering can be a legitimate safety issue. Who wouldn't have wanted a way to prevent eight-year-old Joshua Robb from wandering off into the woods yesterday morning, especially as he remains missing?** But parent and caregiver concerns in no way de-legitimize the concerns of self-advocates, who know -- often from personal experience -- that codifying opportunities to restrict the movements of both children and adults can lead to abuse, due to insufficient understanding of (or attempts to understand) the behavior that led to the wandering in the first place, as Landon Bryce illustrated:


Since the wandering code will go into effect October 1 despite protests from the self-advocacy community, the onus is now on parents and caregivers to understand wandering behavior, and ensure the code is not being used to restrict movement unfairly, abusively, or due to convenience. Parents tell themselves they would never allow this abuse to happen, self-advocates know it too often does.

We parents like to think of ourselves as good people, and hopefully, mostly, we are. But do our actions back up those good intentions? We get filled with righteous indignation while watching movies about objectification by the dominant culture, films like Temple Grandin, Boys Don't Cry, or My Fair Lady. We are outraged by stories of middle school Aspergian torture. We believe, in our souls, that we would never behave so badly toward another human being. We believe that, were we ever in those situations, we would act differently. Right? Let's try to prove it.

Let's try to demonstrate that we are aware of our privilege as neurotypicals, of being outside the disability community. As was reinforced for me last month during BlogHer11's Immigration panel featuring Jose Antonio Vargas, when we're part of the dominant culture, we can't claim we aren't privileged. We are. And it doesn't matter that we didn't ask for the privilege -- we have to make choices about what to do with that privilege. And self-advocates do not have to be nice to us about it, though I think many have demonstrated exceptional patience with me.

Personally, I am trying to listen, really listen, to self-advocates like Corina Becker, who wrote in What I Want People to Know:
I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.
I know I'll fail a lot, probably badly. I know some self-advocates will be really honest with me when I fail. I know some self-advocates don't care what I do, as they're working on strengthening their own community, into which parents and caregivers do not factor.

I'll keep trying to listen, and trying to act accordingly, because I want a the best life possible for my son and his community-mates of all ages. As Ari Ne'eman said at last month's Syracuse University Neurodiversity Symposium in regards to the parent and self-advocate communities,
At the end of the day, we want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them.
At the end of my day, I want a world that treats my son with dignity and respect, takes him seriously, and gives him the accommodations he needs -- regardless of whether but especially if he asks for them -- without patronizing or infantilizing him. And if I of all people do not treat my son's possible future selves -- today's self-advocates -- the way I hope he will be treated, they way everyone deserves to be treated, the way no one should ever have to ask to be treated, then how could I ever demand anyone treat my son better?

----

**Update: thankfully, Joshua was found, but the situation is far from resolved.

44 comments:

  1. Thank you for this. I've received some truly vile treatment at the hands of other autism parents. I've been screamed at, shoved, told I "couldn't possibly understand" their "loss", all because I'm not just a parent of an autistic child, but an open autistic myself. I wish all parents were open to a little acceptance.

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    1. i'm an autistic parent of a autistics and i still get that...
      its about them not wanting to change their perspective

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  2. Thanks for this Shannon. Until a couple of days ago I would have thought I was very good at listening to and appreciating the voices of self advocates. Then I read the comments on the Autism Blogs Directory towards Simon Baron Cohen and have been bewildered ever since. You see I can appreciate both the self advocates and SBC's positions. What I cant seem to reconcile is the anger projected at him after he was gracious enough to address the issues raised by Rachel. I really do appreciate the points made by the many self advocates who responded , but have also found it to be a very uncomfortable process to observe. And what I am struggling with now, is to hear the value in the points raised beyond the anger and not be overcome by feelings of sympathy for SBC in the process. In my view no one is better placed than those with Autism to talk about the experience of being Autistic, but if as Ari says, we are all aiming for the same outcomes, then you are completely correct that defensiveness is not helpful.
    And as an additional note, although many of us parents do not have ASD we did have the genetics that passed it onto our children, which I suspect means for at least some of us, we too may not naturally be good communicators (i say this as a mum who scores very highly on the BAP :))
    All that said, I completely agree with your points.

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  5. Sorry...misspelling corrected:
    You know what? I don't care who "they" are, I'll parent my children--autistic or not--as I see fit. Yes, I'm interested in the experience of people who are similar to my children or have something in common with them--whether it's being male, having autism, having ADHD, or being bright and sensitive. I absolutely appreciate the fact that autistic self advocates are *out there*, paving the way, making the points, opening the doors for people like my son. My mother did the same thing for people with ovaries, and I like to think that I continue to carry her banner, whether or not women who come after me choose my path or the Barbie's Big Ambition is to Be a Bride path. At least they have the choice.

    *But*...thanks to autistic self-advocates and to my husband and me, my son's experience won't necessarily be like theirs, and he won't necessarily be just like them. While I'll always respect experience and perspective, the fact that someone is autistic will no more make them always right than it would make my son always right. Autistic people are just as capable of being misguided or troubled with perspective as anyone else is. We're all just people, and we all have self-insight issues. I'm not excluded from that, obviously.

    So, while I'll always take the experience of others who *know* into account when I do and say things as a parent and as a parent of an autistic child, I'll also always parent my sons as I see fit because at this point in their lives, no one knows them better than I. That doesn't mean I stop my ears and don't listen. I'm always, always listening and considering and taking the perspective of others very, very seriously. And conflict? Bring it. I find that it can really air things out. My autistic son and I are very much alike, and we both have a deep appreciation for candid exchange.

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  6. This is quite remarkable. Thank you.

    Emily, I am wondering who has suggested to you that people with autism are always right, or that you should cede all control over how to raise your child to someone else.

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  7. Landon, interesting inference from what I wrote. To answer your first question, I think there is a tendency especially among people who are actually sensitive to differences, etc., to don the kid gloves in their interaction with people who have those differences and are powerful advocates. I don't own any kid gloves.

    I can't quite find where I've implied that someone tried to force me to cede all control over how to raise my child to someone else, so that one would require clarification. Certainly, I've seen much unsolicited advice from different quarters about how I should rear my autistic son or treat him or talk about him or to him, but I don't recollect ever having described that as feeling compelled to "cede all control." Bit of an overstatement, that. However, I've seen persecution of autism parents for their parenting choices, and it's overstepping, in my opinion.

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  8. And I'll reiterate: "I'm always, always listening and considering and taking the perspective of others very, very seriously." I would hope that others do the same when someone offers them their perspective.

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  9. I interrupt this post spurt to note that I've completely derailed the point of Shannon's post, which is about the art of *listening*, so I'll bow out. Good post, much to think on.

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  10. Scorn, scold, and scram-- always a popular play when questioned by an autistic person!

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  11. Actually, Landon, I did that on behalf of Shannon bc I don't want to derail the discussion about *her* post. As always, you are welcome to engage me by email, as we have done before, or on Facebook. By the way, my autistic son is standing behind me and read your comment. He thinks you're wrong.

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  12. Joshua Robb was found safe, luckily.

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  13. Bridget, thank you.

    Sharon, I suspect that Rachel is coming up with a response of her own, and I look forward to it. With regards to the anger -- if I understand what some folks on the spectrum have said, there is a lot of processing that goes on, online. Sort of like listening to my twelve-year-old who has no internal monologue -- she processes everything verbally. This is exactly the kind of stuff I try to listen to, and learn from -- as a witness, not necessarily as a participant.

    Allyeis - thank you for the update!

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  14. Anonymous9:56 AM

    I submit that we all should make nice and listen to each other: both sides! and to consider what we hear from other perspectives: not just ASD, not just Parent, not just Rights advocate... this is a call for empathy, and, where needed, the development of empathetic skills.

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  15. Tara Kaberry2:05 PM

    Wow. As a teacher and parent of a son with autism who was an extreme wanderer in the early years I would welcome a recognition of the tendency to wander. I don't disregard the characteristics of my students because they have a diagnosis, I use them to help better accommodate and as a springboard for teaching. I would hope that being a part of a diagnosis would bring more attention to and research of this phenomenon. Each time my son absconded I thought this is the time I'm not going to find him. The amount of times I see children in the news that have died as a result of this is devastating. I disagree that a diagnosis is tantamount to abuse. We diagnose to help not sideline people and right their behavior off. The process should not be thrown out because a minority may act appropriately. There will always be that minority and that is no justification to throw the baby out with the bath water.

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  16. Tara Kaberry2:06 PM

    *inappropriately

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  17. Shannon, this is a wonderful, wonderful post. I've long grieved the divide between autism parents and autistic people, and I do my best to bridge it. Sometimes, it's not possible; sometimes, I'm treated viciously by parents, no matter how reasonable and calm I am, and no matter how clearly I express my care and concern. When it happens, I figure that they're stressed and in pain and would rather take it out on me than accept a hand extended in friendship, despite our differing perspectives. I've learned to move on from those kinds of encounters, and not to take them personally, because truly, they're not about me.

    In general, I know quite a lot of parents who listen to autistic self-advocates, even when the listening is uncomfortable, so we are definitely getting somewhere, a little bit at a time. I try to focus on the times and the places that it works, because the rest of it is just too depressing and exhausting for words.

    One thing that I think that parents and self-advocates miss is that all of us are highly stressed by the requirements of advocacy. While parents have to go through the excruciating process of advocating for their children -- correcting dehumanizing assumptions, arguing over services, dealing with the indifference (and judgments) of the larger world, struggling to get every little scrap of what is due to their children -- autistic adults have to go through exactly the same process for ourselves, with all the same stresses, and with all the same anger, and with all the same hurt, and with all the same exhaustion. If we could hold that in mind on both sides, I think we'd be able to respond with more sensitivity to one another.

    And just as an aside: I hope that everyone here present will bear witness to the fact that, in this comment, I am reflecting upon the contents of my own mind and of that of others, that I am engaging in perspective taking, and that I am expressing empathy -- all things that I'm not supposed to be able to do. :-)

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  18. Rachel, of course you are (duh). You've made great points in your third paragraph in particular.

    I was so relieved that Joshua was found last night, and still feel for his family, from whom the authorities removed him. His escape also is making me rethink my attitude about wandering as a diagnosis. I'm wondering if maybe having such a diagnosis for their son might have prevented his being removed from the family.

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  19. Hi Rachel, I hope Shannon doesnt mind me addressing some of what has been bugging me about this SBC business in this forum. Seems fitting.
    As you know I am a parent who has enjoyed listening to your perspective for a while now. And it has given me both comfort and insight. I get so much out of listening to all people on the spectrum who are willing and able to discuss their lived experiences. Which is why it is with great interest that I followed the interview with SBC. And I suppose I am confused at the many responses because I don't hear him saying people with ASD do not develop empathy, just that it is a longer and more difficult process for them as the visual/non verbal clues that us NT's read easily are challenging to impossible for most with Autism. But perhaps I am reading his responses incorrectly? What he describes certainly fits with my son. BUt of course it is essential SBC listen to those who argue their empathic responses are so overwhelming also.
    Whilst I truly appreciate how frustrating it can be when dominant narratives invalidate our personal experience, I cant help think that many reading those angry responses are thinking that they in of themselves prove SBC's point. BY that I mean, there is no acknowledgement that he at least took the time to address the issues. Something he would have been quite entitled not to do. Or that he was trying to use less disorder based language. Or that he had thanked yourself for engaging in the dialogue and the value it brings to him. It did seem that he worked hard to be respectful whilst stating his thoughts based on working in the field for many years. Does that mean he was correct? Not necessarily. BUt he did deserve respect and consideration in return. That was sadly lacking.
    I have been really impressed by how articulate those commenting have been in expressing their problems with the scientific methodology used to collate data about Autistics. There is some really valid criticisms in there. But it concerns me that the vitriol will make it hard for that message to get heard. I hope this makes sense. It's a first thing in the morning ramble.
    I'm really grateful for your effort in setting up the Autism and Empathy site. I think its a really important conversation to be having. Take care,

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  20. This is a wonderful post.

    With regards to SBC, I have a lot to say and don't think I can say it all right now. But I think it's important to acknowledge that autistic people have a right to be angry, and we shouldn't have to always praise our critiques of prejudice in nice, diplomatic language for them to be heard. I think this is true for ALL groups of oppressed people, but it's particularly relevant for autistic people since, well, bluntness is one of our things.

    I strongly disagree with Sharon's interpretation of SBC's response to Rachel. To me it felt disingenuous, and largely as though he wasn't actually engaging her arguments. I also sense discrepancies between what he said there and what he has written elsewhere. The distinction between cognitive and affective empathy, for instance? As far as I am aware, that appears nowhere in his published writings! So I am not terribly well-disposed towards someone who tells the general public that we have "zero degrees of empathy" but then tries to back-peddle when he's addressing us directly.

    Beyond that, it is just incredibly frustrating for autistic people to be told by non-autistic that we're wrong about how we understand ourselves. And to have that couched in the authoritative language of science...it's just truly very upsetting. We are the experts of our own minds.

    I did try to be as diplomatic as I possibly could in my own comments to the entry, being aware that SBC was likely reading them. Because frankly, my own uncensored thoughts on him are a lot more vicious than anything I said there. In places I consider "safe spaces"--like my Tumblr, which is read mostly by other autistic people and allies--I've said a LOT worse.

    Saying that an entire group of people lack empathy is a grossly offensive statement. We shouldn't have to make nice with someone who has done more than anyone else to perpetuate that stereotype.

    And frankly, speaking for myself, I *was* trying to state my thoughts as nicely as possible. In such extreme circumstances, however, it's not going to be all sweetness and light. And it shouldn't be.

    I LOVE the comments from autistic people on that thread, and frankly it really disappoints me to see them dismissed like this.

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  21. Great post. It is essential that we recognize that our "reality" as parents of children with disabilities is quite different from the reality of self-advocates. I am raising a child with a rare orthopedic condition, and have truly loved the ability to discuss, disagree, and dissect different treatment approaches with adult self-advocates. It takes true courage to allow your child to use those skills in ways that may be quite different from your intention. Though people with orthopedic conditions are mainly neurotypical doesn't mean that the discussions between parents of children with the same diagnosis aren't similarly fraught with misunderstandings. Keep up the good work!

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  22. I just re-read the comments on the SBC thread, and I just do not see where the problem is. People were simply stating their objections to what he said, much of that made on purely logical/systematic grounds. Most if not all comments seem to me to clearly meet standards of civility in discussion. (And such standards are rarely adhered to on the Internet, regardless of whether autistic or non-autistic people are communicating.)

    So now I'm just confused.

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  23. Rob Gross7:08 PM

    Shannon- what a thorough, thoughtful, and moving post. I am the proud parent of a self-advocate who, as I've mentioned elsewhere, patiently taught me a much broader understanding of autism and self-advocacy.

    It's easy for me to understand the difficulty that parents have with self-advocates: I am a parent. And I did not understand the broader context of my daughter's positions when, years ago, she first began to have them. I was busy worrying about her future; she was busy trying to change her oppressive present.

    Perhaps I am only familiar with a subset, but something to keep in mind about self-advocates is that they are skewed toward being younger. The paucity of accurate diagnosis when we parents were younger means that many- but certainly not all (hello, Rachael)- self-advocates are twenty-somethings. I am in no way noting this to dismiss what self-advocates have to say because they are a generation younger than their critics. Instead, i am marveling at their assertiveness in fighting for their rights.

    Imagine where they, and we, will have moved the universe of discourse on autism in the future.

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  24. Sarah you do not see a problem. Thats fine. I see it a bit differently and that's fine too. I cant explain myself and my thoughts any better than I already have above.
    As for being blunt. Trust me, I have spent many years fending off accusations for the very same behaviour. I have no trouble with people being direct and to the point. And dont think I implied that above. I also acknowledged why people would be angry. I get it. But I dont have to choose sides here. I see both perspectives.

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  25. Oops hit the send button too soon.
    Sarah please show me where above I dismissed the comments by self advocates. AS if I indeed did do that I will be the first to apologise.

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  26. "Whilst I truly appreciate how frustrating it can be when dominant narratives invalidate our personal experience, I cant help think that many reading those angry responses are thinking that they in of themselves prove SBC's point."

    I'm not sure I would characterize it as dismissal, exactly, but I find that comment quite offensive. And sorry, but I as an autistic person have a hard time seeing anyone who buys into the "autistic people don't have empathy" crap as an ally.

    The overall thrust of your message felt dismissive to me. It read as "how dare those autistic people express feelings of anger," without acknowledging that there are very good reasons for our anger in this particular instance. JMO.

    I really recommend the Nomatissima post linked and quoted here. It really is a wonderful discussion of autistic anger.

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  27. I don't know if anyone here knows what a tone argument was, but to me Sharon's complaints about autistic responses to SBC were a tone argument. And that is dismissive, to me.

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  28. Sorry, I really don't mean to take over the thread here. But I do think this situation proves Shannon's point exactly. Autistic self-advocates are being judged by rules of civility which we ourselves did not create, and in the process what we're actually saying takes a backseat to a non-autistic person's feelings of discomfort and defensiveness. It happens, time and time again.

    And I guess I just find it particularly frustrating because in this case, it wasn't even clear that the auties were being rude and inappropriate. I mean, there was no use of foul language and no personal insults. That right there makes the discussion more respectful than at least 95% of web-based communications. And yet we still get attacked for not quite living up to some subjective standard of conduct.

    It just stings.

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  29. Sarah I suggest you read my comment again. I did not say Autistic people lack empathy. That is not my theory. I am saying I can understand SBC position based on his research. Is the research at fault? Are the tools used problemmatic? Possibly and I acknowledged those points above. It seems to me you are so keen to paint me into a corner you are mis reading what I have written. Or at the very least drawing conclusions that misrepresent my position.
    I will say it again. I appreciated the well thought out analysis of SBC's response, even if at times they seemed harsh. I think it's an important conversation to keep having. I think people jumping straight into defense mode (something I am guilty of often) without appreciating the perspective of the other does not enhance possibilities for joining and understanding.

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  30. I am not attacking people with Autism, and the suggestion I am is absolutely infuriating to me.
    I wish now I said nothing at all.

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  31. I acknowledge that I did actually misread part of your comment. In particular, I saw "I cant help think that many reading those angry responses are thinking that they in of themselves prove SBC's point" as "I can't help think that those angry responses prove SBC's point." That is my mistake, and I apologize for it, but I do stand by my own discomfort with the overall thrust of what you were saying.

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  32. Sarah I understand the anger and frustration that comes with being misunderstood. It upsets me greatly to think I have caused anyone with Autism further unhappiness. I say that with such genuine concern I am fighting back tears as I write this. I am very sorry.

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  33. Thank you. I am very sorry that this exchange has caused you so much distress, and I do feel rather silly for having misread part of one of your comments.

    Just to explain, I am very passionate about debunking SBC's theories and know a lot about them. I could monologue a ton about it if I had the time. (And it is not just the empathy theory that I object to, but also his gender stuff. The way I see it, I and not he will decide what gender my brain is.) When I see people make positive remarks about SBC's theories, it does set me on edge a bit. When his response to Rachel was posted I was at first too weary to even respond to what he was saying for a while, beyond posting a link to a wonderful scientific article debunking some of the notions upon which his theorizing rests. I could not respond honestly to him without resorting to insults and curses, truly.

    I was really impressed by the thoughtfulness of my fellow autistic people's responses to him, and it made me excited. I added my own comment and tried my best to be diplomatic while still expressing my true opinions.

    So for me to see us collectively characterized as "angry" and negative--while at the same time not acknowledging how hurtful HIS theories are--felt hurtful to me. Especially in a wonderful post that was supposed to be about listening to autistic voices. It felt to me as though we were being told that we ought to adhere to a particular standard when communicating our thoughts, and I object to that, except for a very basic level of politeness which I feel was easily surpassed in this particular situation.

    I think I've taken up enough of this thread, I just wanted to explain.

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  34. Rob, you make an excellent point about the age of the average self-advocate. It may be part of the reason that autism parents get their backs up -- simple discomfort and resistance toward listening to their "youngers," especially when their "youngers" are being assertive and impassioned. While I've had some rather hideous experiences with autism parents verbally taking aim and firing at me, my bad experiences do not seem to be nearly so numerous as what younger people are describing. This may be because I am older than most of the autism parents I talk with (I'm in my fifties) and I've raised a daughter to adulthood, so parents may simply be more open to me. Not sure. I supposed I'd need to ask them. :-)

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  35. thank you for this post- not a lot of parents of autistic children are respectful at all. it was encouraging to read.

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  36. Sharon, I've been thinking quite a bit about your question regarding why people are responding with anger when SBC responded to my work with such an even-handed and kindly tone. I'm going to leave aside the question of content, as others here have already spoken to it, and I plan to write a post of my own about it.

    But what I want to concentrate on here is SBC's tone. SBC nearly always writes with a rather cheerful, friendly, kindly tone -- even when his content consists of some of the most pejorative stereotypes about autistic people around. "The Science of Evil" is a good example. It's difficult enough to deal with the content, but when the tone is out of kilter with it, it's very frustrating. It's like standing face to face with someone who is smiling at you and saying something pejorative at the same time. Anger is a rather predictable response to the frustration.

    It's for this reason that I find reading and critiquing SBC's work very difficult; I constantly have to work around the cognitive dissonance and all the feelings it raises in order to bring the necessary intellectual discipline to the writing. And because I refuse to match his cheerful and friendly tone when his content calls for a fair bit of outrage, I always feel myself running the risk of being dismissed as simply impolite. In all of my work, I always appeal to reason, I never engage in ad hominem attacks, I bend over backwards to be fair, and I do my best to speak with civility -- and yet, with his tone as a foil, much of that can get lost. Most people understand what I'm about, but some people really can't get past the contrast in tone.

    So I think this is why the self-advocates might have come across as over-the-top angry to you. With SBC's tone as a point of contrast, it's difficult not to, whether you're over-the-top angry or not.

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  37. Thanks for taking the time to respond Rachel. For the sake of clarification can I add I dont think the anger was "over the top". Anyone who has spent any length of time perusing the online ASD community will have seen good examples of "over the top" behaviour. And I dont think I can cite any of that from the line of comments to SBC.
    Is there any room to acknowledge by those who find his tone and words conflicting, that he did not have to respond at all? That there is no motivation for him to address your points (all good ones) except for attempting to explain his perspective?
    I am willing to concede I may be wrong here, but it did seem to me at least he was genuine.
    As I said above, I cant find the words to explain any better how I feel about this. I cant convey any clearer how much I understand the anger that comes from feeling misunderstood and invalidated, or worse dehumanised. I do understand those emotions. And as someone who had read my blog from time to time I am sure you are aware how passionate I am about listening to the voices of Autistics. Which was the original point of this post, and one I now wish I had just stuck to :))
    Thanks again Rachel for the response. I hope there are no hard feelings.

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  38. This is helpful for me to read. Thanks for writing it.

    Dixie

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  39. Sharon,

    you seem to think that the fact that SBC responded to an ASD person's issues with his stance means that we have to accept his patronising tone, his deliberate skimming over or ignoring points that would invalidate his position and the fact that what he's prepared to put in the public, NT domain is at variance from the stance he takes when 'talking' to us.

    Sorry, but his position is simply not scientific when he ignores any data or new information that contradicts what he believes. And there is a definite head patting, there-there undercurrent to his reply that seriously puts my back up.

    I am an autistic doctor who sometimes goes home in tears for the suffering of people I have cared for. SBC would have it that I am just a dancing bear, that my tears, my sympathy, my understanding are simply 'acquired through logic' and therefore can be dismissed as not real because of my diagnosis.

    A couple of weeks back I had to tell the parents of a seventeen-year-old girl that she would never walk, or even breathe, independently again. I stood outside that little room gathering my strength, knowing I was about to shatter their world, scraping together my professionalism, steadying my voice. Afterwards I was shaky and teary for a long time; hearing them sobbing in the relatives room caused me physical pain. But SBC says this is not empathy, that I am the dancing bear, that my feelings are not real but the result of some robotic thought processes.

    Yes, SBC deserves all the scorn we can muster. He is a scientist who ignores information that does not accord with his predetermined conclusion.

    Which means he's not a scientist at all.

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  40. boy! that is one great blog post. Kudos to you! I enjoyed the read.

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  41. Anonymous11:31 AM

    Emily, Landon was probably referring to this: " the fact that someone is autistic will no more make them always right than it would make my son always right." This does imply that autistic self-advocates like to dictate how you raise your child. I'm hurt that someone would imply that when I'm autistic and I give people information from my perspective - however, you didn't actually describe to us your experiences and what was said that made you feel like autistic advocates believe themselves to be "always right". I myself don't tell people my experiences as if that's all that's right. I remind people that Im only speaking from my perspective.

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  42. Thank you, this is exactly to the point.

    I have a nit pick wording wise in a general Disability context rather than Autism specific one that is off topic that I'm going to email to you. I really don't want to intro it in this thread, though it's not a private email or anything. Just an "oh, off topic, better email instead" email. :)

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  43. Thanks for writing this article...very helpful. I am a Mother to my amazing son who was born very premature and is on the spectrum.
    Also, as an adult adoptee, I can totally relate to people with autism who are "self-advocates" and SO appreciate them. Adult adoptees are very much in the same situation as trying to communicate that we are the true experts in adoption, not the baby brokers who make a living at changing our birth certificates and serving those who pay to adopt.
    I hope adults who have autism NEVER STOP writing...I have learned more from them regarding how to be a good Mother to my son, than anyone else. Bless you for shining the light on this.

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