tag:blogger.com,1999:blog-8353442983052145851.post8523156482816780903..comments2024-03-14T18:26:18.208-07:00Comments on autism's gadfly: john elder robison gives his take on gadfly's viewsjonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-8353442983052145851.post-66099379556086318302009-07-23T20:02:17.089-07:002009-07-23T20:02:17.089-07:00Anon,
That's exactly what the word means to m...Anon,<br /><br />That's exactly what the word means to me. <br /><br />"Aspie" was invented by Dr Liane Holliday Willey (Ed.D), author of 'Pretending to be Normal: Living with Asperger's Syndrome'. She was self-diagnosed when she wrote the book.<br /><br />~ WatsonAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-26086004370966694102009-07-23T17:32:08.585-07:002009-07-23T17:32:08.585-07:00Do you consider yourself an "Aspie" Jake...Do you consider yourself an "Aspie" Jake or a person with Asperger's? "Aspie" is has become an insult to me: it means a ND person who was probably self-diagnosed and not disabled in any way.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-655555781598990472009-07-23T17:10:28.563-07:002009-07-23T17:10:28.563-07:00Hey Mr. Robinson,
It's great to hear from you...Hey Mr. Robinson,<br /><br />It's great to hear from you! :)<br />I came across your book at a Barnes and Nobles recently, and I thought it was quite interesting.<br /><br />Anyway, my name is Adam and I suffer from expressive-receptive language, concentration and processing problems due to my autism (I don't have AS). I see a speech-language pathologist to learn coping strategies and minimize my symptoms for my autism and other disabilities like pragmatics, executive functioning skills, and social and communication skills so I can live a much easier life and be more confident. I may even consider neurofeedback training like Jonathan mentioned in his lastest post, yet my pathologist would rather have me stick with her for now because her therapy would contradict with the neurofeedback, causing both treatments to give me harm. Therefore, I'll likely wait a while after I stop seeing the speech therapist. I have strong ambitions to overcome and fight through my autism even further than when I was a child enrolled in speech and occupational therapy by my parents.<br /><br />Anyway, congratulations for your successful book and for everything you've been able to accomplish! :)<br />I sure hope we can meet up at a conference one day.<br /><br />Take care,<br />Adam (AKA- JediKnight2)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-64343827680091094582009-07-23T15:22:02.616-07:002009-07-23T15:22:02.616-07:00"I refer almost everything I say to "Asp..."I refer almost everything I say to "Aspies," not to you Roger."<br /><br />As if that's any better, throwing us under the bus because of what some internet-squatting NDs say.Jake Crosbyhttp://www.ageofautism.com/jake-crosbynoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-73240831629150339912009-07-23T10:12:17.746-07:002009-07-23T10:12:17.746-07:00Like ASD, individuals with NLD have difficulty wit...Like ASD, individuals with NLD have difficulty with non-verbal aspects of communication such as eye contact, reading facial expressions etc., as well as sensory issues; BUT those with NLD also have problems with visual-spatial organization, this affects math, and visual memory, contradicting the idea that all ASD individuals are superior visual learners with photographic memory, as the ND crowd toutsAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-64722024263115393502009-07-23T06:17:01.742-07:002009-07-23T06:17:01.742-07:00John R,
You ask: Why can't we all get along? ...John R,<br /><br />You ask: Why can't we all get along? <br /><br />That's easy to answer. Because when people are struggling to get through life with a severe disability, they can't understand, and neither can their caregivers, how anyone can crow about the advantages of having it. For them, there are no "good parts", because unlike your mild Aspergian autism which you say is "livable", theirs isn't. <br /><br />There is nothing advantageous about not being able to communicate, interact, and socialize with fellow human beings. That is what autism is. <br /><br />You and other Aspies, mostly self-diagnosed, with high IQs, special talents, college degrees and jobs who are capable of writing books and blogging about autism represent the very tip of a huge autism iceberg, the only part that ND wants the public to be shown. The message portrayed is that autism isn't so bad. After all, no one could look at Einstein, Glenn Gould, Stephen Spielberg, Vernon Smith or Tyler Cowan and say, "These people need(ed) a cure", or read your book and say, "John Elder Robison sure needs to be cured".<br /><br />The reality is that beneath the tip of the autism iceberg, and underneath this portrayal of autism as eccentricity, difference, and giftedness lies the hidden 94% of people with an ASD who are either unemployed because they are unemployable, or only work part-time. ND does not want the public to see autism as the Raymond Babbitts, Linda Freemans, or Charlie Mollisons of this world or hear about them. <br /><br />Not only are you among the 12% of people with Asperger's Syndrome who have full-time employment, and who are able to pass for normal, you are among the select few who are able to make real friends (which I seem to recall from your book you have been able to do since you were around 6), you are able to have relationships with the opposite sex, find yourself a lifetime partner, and raise a child of your own. So I am not at all surprised to hear you say that you find your life livable, and that you are not seeking a cure. It is the other 9/10ths of the iceberg that is sunk beneath the guise of ND ideology that wrecks lives. <br /><br />http://www.dadalos.org/frieden_int/images/eisberg-modell.jpg<br /><br />What is a mystery to me is how in good conscience psychologists can diagnose adults with "Autistic Disorder", "Asperger's Syndrome", or "Mild Aspergers" who are living normal lives when DSM Criteria C clearly states, <b> "The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning"</b>. Quite obviously I don't understand the meaning of the words "clinically significant". <br /><br />I think that psychologists should come up with another Diagnostic and Statistical Manual, not of "Mental Disorders", but "States of Being" where eccentric geniuses, academics, creative types, and anyone who "feels different", or has an Aspie personality type can be diagnosed as Aspergian Mutants. <br /><br />I was going to link to Edan's site here but I see, just like Klein's site, Aspergia has disappeared. Perhaps they both feel that their mission has been accomplished, and it's time for them to forget about autism and get back to their lives. Here's a section from Aspergia on this forum: <br /><br />http://divinecosmos.com/forums/showpost.php?s=a592edeafdd997f32ff371a90b14c86f&p=38235&postcount=8<br /><br /><br />~ WatsonAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-16268502140141112662009-07-23T01:30:58.474-07:002009-07-23T01:30:58.474-07:00Blaming everyone else for all one's problems i...Blaming everyone else for all one's problems is not restricted to "Aspies" - when I have seen such posts on WP, I have wondered what age the poster is, because this attitude is present among the young in general in the UK. There's a lot of blaming everything on racism or sexism etc, but it's not always true, sometimes it's just an excuse.<br /><br />I do see that the perfectionist and justice-loving tendencies of the Aspie might make inequality tougher to bear.<br /><br />Roger Kulp - AFAIK it's not a true mitochondrial disease which would be more severe, but the function is somehow disrupted.<br /><br />LMAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-42695043563047310312009-07-23T01:08:57.338-07:002009-07-23T01:08:57.338-07:00Hyperlexia and dyslexia going together is interest...Hyperlexia and dyslexia going together is interesting, to be sure. I suppose I should state how each effects me. First dyslexia, well simply put no phonics skills whatsoever (test on the 4th grade level, my Freshman year of college). Every word I read I memorize. This makes it very hard for me to spell anything as well as learn to speak/read a foreign language (brand new phonics skills to learn).<br /><br />Now onto hyperlexia, admittedly this is self-diagnosed, but please do allow me to continue. I was able to read at about the age of 3 or 4. I read everything in sight (most of the time quite a few times) all throughout my childhood, and even on to today. I have always been obsessed with numbers (I have heard this is inter-related). I was always able to read at several (generally 3-5)years above my grade level, and I could go on and on.<br /><br />Beyond that NVLD is almost always comorbid with asperger's, I am not sure how they contridict with each other. You are aware the v stands for verbal right. Nonverbal, sounds a lot like aspies to me, and the traits are almost always similiar.Enderhttps://www.blogger.com/profile/13936753464525224578noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-73000208057829843712009-07-22T22:17:57.519-07:002009-07-22T22:17:57.519-07:00Hyperlexia and dyslexia are neurological opposites...Hyperlexia and dyslexia are neurological opposites; The ND crowd claims all with ASD are superior visual learners, yet this trait should contradict co-mormid NVLDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-5216720993320900042009-07-22T18:56:17.153-07:002009-07-22T18:56:17.153-07:00I believe Jonathan tried for years to have a job; ...I believe Jonathan tried for years to have a job; I believe Jonathan tried his best and didn't simply say it was society's fault and give up. He knows it is due to his autism but he didn't blame anything on society. I believe Jonathan doesn't have Asperger's but High Functioning Autism.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-25455290776442075032009-07-22T17:10:57.151-07:002009-07-22T17:10:57.151-07:00"I am NOT referring to people who truly are d..."I am NOT referring to people who truly are disabled, just people who are very high-functioning and like to blame society for their problems and never take any personal responsibility, those who never bother to get appropriate treatment."<br /><br />That sounds right out of the ND playbook for what is said about Jonathan. Can't hold down a job and blames everything on autism.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-78513324783150105772009-07-22T14:24:18.492-07:002009-07-22T14:24:18.492-07:00Oh, and I agree that "autism" *is* an ex...Oh, and I agree that "autism" *is* an excuse in many cases. I see people who aren't really disabled in any way and yet blame everything on autism.<br /><br />I am NOT referring to people who truly are disabled, just people who are very high-functioning and like to blame society for their problems and never take any personal responsibility, those who never bother to get appropriate treatment.<br /><br />I thought you were getting treatment, Roger? "Aspies" like to blame society and keep their symptoms; I'm sure you want to get rid of yours.Stephaniehttps://www.blogger.com/profile/12540927559726674184noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-59977995374843788122009-07-22T14:19:04.793-07:002009-07-22T14:19:04.793-07:00I refer almost everything I say to "Aspies,&q...I refer almost everything I say to "Aspies," not to you Roger.<br /><br />I thought you knew that already. Sorry.Stephaniehttps://www.blogger.com/profile/12540927559726674184noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-45667503198501130372009-07-22T09:29:16.796-07:002009-07-22T09:29:16.796-07:00If you don't have an official diagnosis of AS ...If you don't have an official diagnosis of AS than *I* can't even argue whether or not you do have it: you don't. I only argue the AS/Autism diagnosis in people who have been given an official diagnosis, usually by a doctor they saw once.<br /><br />Well, since you seem pretty fine now I guess you didn't need any supports then, did you? <br /><br />Severely disabled autistic people CAN'T choose their own treatment plan. I think if a kid is severely injuring themselves, incontinent, can't communicate and smears feces he/she needs treatment of any kind.<br /><br />You are living in South Korea teaching English and yet still claim to have an ASD and that "Aspies" don't have any opportunities?<br /><br />Before I can take advantage of anything I have to get treatment for my medical disorder. Duh. <br /><br />Pretty much everyone has the same opportunities. But some people are more disabled than others and need treatment. And some people refuse to get treatment and can't figure out why they can never get anywhere in life.<br /><br />I know most "leaders" have a job and/or are completing college. But, believe it or not, many people with an ASD cannot do those things AT ALL unless they get intensive treatment. Duh.Stephaniehttps://www.blogger.com/profile/12540927559726674184noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-60162888572647811442009-07-22T08:54:55.657-07:002009-07-22T08:54:55.657-07:00I didn't say that none of you ever had a job. ...I didn't say that none of you ever had a job. I wasn't even entirely sure. I also said I am sure I didn't have it near as bad as any of you.<br /><br />As for supports, the only support I ever received was being allowed to type my tests... in college (before that nothing). So I didn't come to that conclusion without adequate basis either. 0 supports in elementry school (other then an psycatrist who I sometimes saw, by choice), no supports in middle school, and less then no supports in high school. Beyond that some teachers actively went against me throughout school, and they tried to stick me into the ED/BD room in elementry school (but still no supports... don't ask me to explain it). So, yea, next to no supports.<br /><br />Beyond that, I just said I had 6 disorders to show that its most likely I do have asperger's, Jonny tried to claime I didn't before, and he said he would now.<br /><br />Now moving on, I just think, in the case of any HFA or aspie person, they should be able to choose their own treatment plan. This goes for any age. I hate it when parents think its their right to change their kid. Of course, thats just me.<br /><br />I am in South Korea, not much with disability rights here. Teaching English, with dyslexia, yea I could easily get fired if they found that out. I don't have any disruptive behaviors when working (the worst I have done is told a kid to shut up once, everyone has done worse here, we are half babysitters so the kids can get annoying).<br /><br />And once again you are stereotyping, not all of us would rather spend all day posting on blogs then get a job :). Maybe you guys should take advantage of some of the chances that your given, before you start critizing some aspies that don't have them. Most leaders have a job or are just completing college, I mean look at Robison for crying out loud.Enderhttps://www.blogger.com/profile/13936753464525224578noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-17775086520533456212009-07-22T07:17:35.414-07:002009-07-22T07:17:35.414-07:00I didn't base that "opinion" without...I didn't base that "opinion" without interacting with plenty of "Aspies" first.<br /><br />And I am sure I had less support than you. Good job putting yourself up on a pedestal: "I had less support than any of you and I have six different diagnoses yet I STILL have a job, unlike any of you!"<br /><br />But than you state that your disorder is milder than most, so why even make the statement: "I've had less support than any of you and have at least six diagnoses" if it is milder than most.<br /><br />Some people actually need intense medical help for a medical disorder and need to pretty much completely "recover" from their disorder to function, obviously unlike you.<br /><br />I have more than one diagnosis, I just don't tell the world what they are.<br /><br />By the way, if you get "sacked" because of a disability you can sue because that is illegal. So I don't know what you are worried about. But, an employer can also force an employee to get treatment for a disorder if a behavior is disruptive.<br /><br />The world gives "Aspies" plenty of chances, "Aspies" just decide not to take it because no one will "accept" them for who they are rather than taking personal responsibility for their own "difference."Stephaniehttps://www.blogger.com/profile/12540927559726674184noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-79153197064036750022009-07-22T06:54:47.123-07:002009-07-22T06:54:47.123-07:00Steph, that was quite possibly the most bigoted co...Steph, that was quite possibly the most bigoted comment I have ever seen on here. I am sure I have had less supports throughout my life then any of you (if you think I don't have asperger's fine, but I at least have ADD, ODD, SID, General Anixity Disorder (GAD doesn't sound right), NVLD, dyslexia/ hyperlexia, and a few others that aren't coming to my mind, I would think with 6 disorders I should get more supports then someone with 1, don't you think :).)<br /><br />I am now teaching at a job where if someone found out any of that (especcially the last two) I could get sacked at any moment. I have found myself talking to myself more lately and showing many outword signs of stress. Still I leave it to myself to survive or parish.<br /><br />I could go on and on here, but the point is, not all of us expect the world to change for us. Now would we appreciate it if the world was friendly to us, DUH! Would we appreciate it if the world would actually give us a chance and not be repulsed by us, see above. In many ways we are the perfect employees, but people don't give us a chance.<br /><br />Now I will admit, that whatever the **** I have, it is milder then most. I have been able, with proper training, to get over many of the problems that used to plague me. Not everyone can do this, but I still have a hard to near impossible time making lasting friendships, an impossible time finding a date, etc. Still would I give who I am away for anything, not on your life. Nothing about us without us, thats all I ask for.<br /><br />P.S. To paraphrase Foreman, one diagnosis is always the simplist explanation. When six disorders can be explained away with one, its probably a good idea, to see if it fits, don't ya think? SID, ODD, ADD, NVLD, GAD (maybe it does work), and dyslexia, are all comorbid with Asperger's. Heck, most books about Asperger's at least talk about the first 4, maybe 5.Enderhttps://www.blogger.com/profile/13936753464525224578noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-7643962641400075372009-07-22T06:25:27.754-07:002009-07-22T06:25:27.754-07:00I can't get along with "Aspies" beca...I can't get along with "Aspies" because they refuse to take personal responsibility for themselves and get help. They like to complain about how "society" doesn't accept them and expects "society" to accept their disruptive behavior rather than seeking help from qualified professionals and taking responsibility for their behavior. ND only helps "Aspies" revel in their diagnosis since it is only a "difference" that needs no "cure." And yet they can never figure out why they can't hold down a job...it must be because of society, not because of their refusal to get help for their medical disorder.Stephaniehttps://www.blogger.com/profile/12540927559726674184noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-81729837521402421832009-07-22T04:48:26.914-07:002009-07-22T04:48:26.914-07:00Roger Kulp - I am in my 30s and recently realised ...Roger Kulp - I am in my 30s and recently realised that I might have mild Asperger's. I have not sought official diagnosis - I would like to know for myself, but I don't want the label. I have mitochondrial problems, possibly immune too.<br />I would like to be better at reading social situations, I would like to be good at small talk, I would like my brain to filter sounds properly.<br />I wouldn't force a cure on anyone, but I would like there to be a cure available to me. If there ever is, then I'll consider going for a formal diagnosis in order to access the cure.<br />I find it hard to understand why people would choose to remain disabled.<br /><br />LMAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-17986666058068240552009-07-21T20:46:11.316-07:002009-07-21T20:46:11.316-07:00Jon and John R... and Jake...
The reason he under...Jon and John R... and Jake...<br /><br />The reason he underwent that study might not be because he wants a cure but perhaps a better way of understanding what is and isn't Asperger's. I do not consider myself pro-neurodiversity in that I do desire a cure ultimately. <br /><br />But I can see someone who does not want a cure that would submit to testing to help understand and thusly accept brain differences. I do not think it's a contradiction necessarily. <br /><br />Thanks Jon, once again, for an enlightening post on gadfly :)Heather Babeshttps://www.blogger.com/profile/02032800572592796632noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-75299765378850156872009-07-21T19:04:13.903-07:002009-07-21T19:04:13.903-07:00To respond to Jake . . .
When I say I don't ...To respond to Jake . . . <br /><br />When I say I don't want to be cures, I mean that Asperger's is an essential part of me, and it has good and bad parts. I would not want the whole thing summarily yanked away with a "cure," if such a thing were possible.<br /><br />That said, I recognize some real limitations that result from my AS, and if a therapy like TMS can remediate one of them, I'm all for that.<br /><br />So nothing is black and white, is it?John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-41185831195141299692009-07-21T18:11:35.252-07:002009-07-21T18:11:35.252-07:00Jonathan,
I have put a link to this post in the c...Jonathan,<br /><br />I have put a link to this post in the comments of my own blog. I’d like to answer a few of the questions you raise here.<br /><br />You quote page five of Look Me in the Eye. This is the whole passage you refer to:<br /><br />Asperger’s is not a disease. It’s a way of being. There is no cure, nor is there a need for one. There is, however, a need for knowledge and adaptation on the part of Aspergian kids and their families and friends. I hope readers – especially those who are struggling to grow up or live with Asperger’s– will see that the twists and turns and unconventional life choices I made led to a pretty good life, and will learn from my story.<br /><br />I do not believe that passage pushes my view that no one like me “needs a cure,” as you say. It’s simply a statement of my reality. Asperger’s is a way of being, not an illness, and as manifested in me, it’s livable.<br /><br />When I wrote that passage I had very limited experience with others on the spectrum. If I were to write it today, I’d probably qualify it in some way. I recognize that you see it differently. <br /><br />You say that I offered only a superficial perspective on your own views. I agree – my story was meant to be a short pointed blog post, not a chapter of a book. But I direct people to your blog for more.<br /><br />You ask if my parents took me to be evaluated at an early age. The answer is, they did. However, pediatricians in rural Georgia were not too interested in what my mother had to say. They said, “He’ll grow out of it.”<br /><br />Later on, when we moved to Amherst, MA, my parents took me to one psychologist after another and they enrolled me in a special ed group program run by the School of Education at UMass. At no time was autism discussed. It was always laziness, defiance, sopciopathy, etc. I was in various forms of therapy or special ed programming right into high school, until I dropped out.<br /><br />You also ask if I have received an Asperger diagnosis from a clinician since learning of it from my therapist friend. First of all, a therapist friend is still a therapist, and a diagnosis from him is no less valid because we knew one another at the time. Since then, I have received several diagnoses from doctors at University hospitals. So the short answer to that question is, Yes.<br /><br />You note that special ed is not a part of Look Me in the Eye. Why did I leave that out? I guess it just didn’t make the grade in my mind when I composed the book. After all, a 90,000 word book can only contain a tiny fraction of the life experience of a person my age.<br /><br />It’s clear to me that your life experience – as depicted by your writing – is quite different from my own. That’s why I wrote today’s post – to illustrate that diversity.<br /><br />Best wishes<br />JohnJohn Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-8353442983052145851.post-82354607394200685402009-07-21T17:43:49.687-07:002009-07-21T17:43:49.687-07:00I find it rather ironic that Mr. Robinson submits ...I find it rather ironic that Mr. Robinson submits to the ND view of not wanting to be cured, because last year he underwent transcranial magnetic stimulation, an experimental treatment for autism, at Harvard University and it seemed to have helped him.<br />http://www.ageofautism.com/2008/05/john-robison-ca.html<br />http://www.ageofautism.com/2008/06/john-elder-robi.htmlJake Crosbyhttp://www.ageofautism.com/jake-crosbynoreply@blogger.com