tag:blogger.com,1999:blog-5563550.post1192510561409262912..comments2024-02-02T03:32:36.204-07:00Comments on SQUIDALICIOUS: On Parents Listening to Self-AdvocatesUnknownnoreply@blogger.comBlogger44125tag:blogger.com,1999:blog-5563550.post-88311232509772657202013-10-28T11:08:31.704-07:002013-10-28T11:08:31.704-07:00i'm an autistic parent of a autistics and i st...i'm an autistic parent of a autistics and i still get that...<br />its about them not wanting to change their perspective<br />Amanda Millshttps://www.blogger.com/profile/06885887114848677389noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-38420491858471129312012-09-19T10:51:28.987-07:002012-09-19T10:51:28.987-07:00Thanks for writing this article...very helpful. I...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. <br />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. <br />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.Samantha Franklinhttps://www.blogger.com/profile/18249283547377633349noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-66631449488919850042012-01-13T13:59:03.056-08:002012-01-13T13:59:03.056-08:00Thank you, this is exactly to the point.
I have ...Thank you, this is exactly to the point. <br /><br />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. :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-34962802675337945652011-09-29T11:31:20.577-07:002011-09-29T11:31:20.577-07:00Emily, Landon was probably referring to this: &quo...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-8358359265182939722011-09-23T07:39:06.252-07:002011-09-23T07:39:06.252-07:00boy! that is one great blog post. Kudos to you! ...boy! that is one great blog post. Kudos to you! I enjoyed the read.Jim W.http://blogginglily.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-4936088720673842782011-09-23T07:24:16.741-07:002011-09-23T07:24:16.741-07:00Sharon,
you seem to think that the fact that SBC ...Sharon,<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Yes, SBC deserves all the scorn we can muster. He is a scientist who ignores information that does not accord with his predetermined conclusion.<br /><br />Which means he's not a scientist at all.Alexnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-5364931585741696652011-09-21T08:12:33.461-07:002011-09-21T08:12:33.461-07:00This is helpful for me to read. Thanks for writin...This is helpful for me to read. Thanks for writing it. <br /><br />DixieDixie Redmondhttps://www.blogger.com/profile/18290571323764327616noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-78134391729652290512011-09-15T15:55:22.514-07:002011-09-15T15:55:22.514-07:00Thanks for taking the time to respond Rachel. For ...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. <br />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? <br />I am willing to concede I may be wrong here, but it did seem to me at least he was genuine. <br />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 :))<br />Thanks again Rachel for the response. I hope there are no hard feelings.sharon Morrishttps://www.blogger.com/profile/15492764403059640967noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-66865477496110088732011-09-15T07:41:08.509-07:002011-09-15T07:41:08.509-07:00Sharon, I've been thinking quite a bit about y...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.<br /><br />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. <br /><br />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.<br /><br />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.Rachelhttp://www.journeyswithautism.comnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-25417889107244308842011-09-14T22:41:24.226-07:002011-09-14T22:41:24.226-07:00thank you for this post- not a lot of parents of a...thank you for this post- not a lot of parents of autistic children are respectful at all. it was encouraging to read.theillegibleshttps://www.blogger.com/profile/15446272085324319452noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-22789674006018690632011-09-14T22:21:37.348-07:002011-09-14T22:21:37.348-07:00Rob, you make an excellent point about the age of ...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. :-)Rachelhttp://www.journeyswithautism.comnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-86763160009114847072011-09-14T21:19:57.599-07:002011-09-14T21:19:57.599-07:00Thank you. I am very sorry that this exchange has...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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />I think I've taken up enough of this thread, I just wanted to explain.Sarahhttps://www.blogger.com/profile/00313619400997453196noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-73544609355882065022011-09-14T21:10:17.220-07:002011-09-14T21:10:17.220-07:00Sarah I understand the anger and frustration that ...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.sharon Morrishttps://www.blogger.com/profile/15492764403059640967noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-36481978965930047722011-09-14T21:03:57.508-07:002011-09-14T21:03:57.508-07:00I acknowledge that I did actually misread part of ...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.Sarahhttps://www.blogger.com/profile/00313619400997453196noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-11008754339594556202011-09-14T21:00:51.471-07:002011-09-14T21:00:51.471-07:00I am not attacking people with Autism, and the sug...I am not attacking people with Autism, and the suggestion I am is absolutely infuriating to me. <br />I wish now I said nothing at all.sharon Morrishttps://www.blogger.com/profile/15492764403059640967noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-84809234603426599522011-09-14T20:54:06.418-07:002011-09-14T20:54:06.418-07:00Sarah I suggest you read my comment again. I did n...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.<br />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.sharon Morrishttps://www.blogger.com/profile/15492764403059640967noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-8767536099263211812011-09-14T20:47:39.410-07:002011-09-14T20:47:39.410-07:00Sorry, I really don't mean to take over the th...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.<br /><br />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.<br /><br />It just stings.Sarahhttps://www.blogger.com/profile/00313619400997453196noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-80881642555961257502011-09-14T20:38:42.944-07:002011-09-14T20:38:42.944-07:00I don't know if anyone here knows what a tone ...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.Sarahhttps://www.blogger.com/profile/00313619400997453196noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-21199030777308502012011-09-14T20:35:04.829-07:002011-09-14T20:35:04.829-07:00"Whilst I truly appreciate how frustrating it..."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."<br /><br />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.<br /><br />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.<br /><br />I really recommend the Nomatissima post linked and quoted here. It really is a wonderful discussion of autistic anger.Sarahhttps://www.blogger.com/profile/00313619400997453196noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-35638765504607692572011-09-14T20:19:27.854-07:002011-09-14T20:19:27.854-07:00Oops hit the send button too soon.
Sarah please sh...Oops hit the send button too soon.<br />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.sharon Morrishttps://www.blogger.com/profile/15492764403059640967noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-78113205295882543492011-09-14T20:15:11.091-07:002011-09-14T20:15:11.091-07:00Sarah you do not see a problem. Thats fine. I see ...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. <br />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.sharon Morrishttps://www.blogger.com/profile/15492764403059640967noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-59930994731755300712011-09-14T19:08:35.902-07:002011-09-14T19:08:35.902-07:00Shannon- what a thorough, thoughtful, and moving p...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.<br /><br />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.<br /><br />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.<br /><br />Imagine where they, and we, will have moved the universe of discourse on autism in the future.Rob Grossnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-19790424082557320452011-09-14T17:39:15.169-07:002011-09-14T17:39:15.169-07:00I just re-read the comments on the SBC thread, and...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.)<br /><br />So now I'm just confused.Sarahhttps://www.blogger.com/profile/00313619400997453196noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-10933451109154236602011-09-14T17:05:54.729-07:002011-09-14T17:05:54.729-07:00Great post. It is essential that we recognize tha...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!Maureenhttps://www.blogger.com/profile/15381915944266992009noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-32754781346529417892011-09-14T17:02:23.462-07:002011-09-14T17:02:23.462-07:00This is a wonderful post.
With regards to SBC, I ...This is a wonderful post.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />I LOVE the comments from autistic people on that thread, and frankly it really disappoints me to see them dismissed like this.Sarahhttps://www.blogger.com/profile/00313619400997453196noreply@blogger.com