tag:blogger.com,1999:blog-5751271189667675662.post5827015325393153699..comments2024-03-28T09:19:51.567-04:00Comments on Look Me In The Eye: Division in the Autism Community - what next for us?John Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-5751271189667675662.post-86687129380595212032017-06-04T08:10:10.960-04:002017-06-04T08:10:10.960-04:00That's an interesting example you chose, Ralph...That's an interesting example you chose, Ralph. I am certainly that way myself. You say that's not communication based but I'm not so sure I agree. Might it be that we are oblivious to the signals and cues of others, and so we never develop a sense of connection to them. That would of course include deference. <br /><br />If an NT kid sees others showing deference to, say, an adult they may mimic that behavior. Many of us would not, producing exactly the behavior you cite with communication disability as its foundation.<br /><br />While it's easy to cite examples of situations where communication disability of this sort is problematic it's also easy to find examples of where it's beneficial which in my opinion is likely why is persists in the human genome.John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-40533566948174831662017-06-04T06:56:34.933-04:002017-06-04T06:56:34.933-04:00I, like Roger, disagree that ASD is a communicatio...I, like Roger, disagree that ASD is a communication problem. However it's not because I espouse a more limited definition. The lack of social instincts is not a communication problem. For example lack of deference to authority is a lack of the neurotypical submissive emotion rather than a failure to communicate the presence of that feeling to others.Ralph Doncasterhttps://www.blogger.com/profile/00037504544742962130noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-35970339926176186182017-06-02T13:33:46.166-04:002017-06-02T13:33:46.166-04:00Totally agree with Greg Love here. Low and high-fu...Totally agree with Greg Love here. Low and high-functioning labels are damaging as they carry stigma c.q. begin 20th century with the grading scales for 'morons'. Furthermore, Neurodiversity advocates the likes of myself, ASAN, boycott autism speaks, Steven Silberman, Samantha Craft etc etc are actually part of a greater movement fighting for disability rights (cerebral palsy, autism, NLD, non-verbals etc etc), LGBTQ rights, afro-american autists' rights, etc etc. - just go their sites, FB pages, meetings.<br /><br />The only people seeding discords are the so-called 'experts' who don't have the humility to reflect on the fact that their very own certitudes had evolved with time in the past 30 years. They are now the brake to acceptance and inclusion as they still dwell in ableism and research for cures while maintaining ambiguity as to what autism is.<br /><br />Autism is two things: "primary (idiopathic)" autism/adhd (stereotype: families with a lot of scientists and engineers), and secondly: any conditions or circumstances which causes "autism-like" symptoms: Rett, Fragile X, Angelman, Deletion Syndrome, Willis-prader but also any source of brain tissue damage, damn even sleep deprivation can make you hypersensitive to stimuli while reducing your brain's RAM memory!<br /><br />All in all, everyone's right in his/her own reference frame, let's just please look at the moon, not the fraggin' fingers.Fysiohttps://www.blogger.com/profile/02816773055258601325noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-16276695215984233042017-06-02T12:21:49.695-04:002017-06-02T12:21:49.695-04:00Roger, thanks for the link. But I would like to po...Roger, thanks for the link. But I would like to point out that I am one of those neurodiversity paradigm proponents you are in fact talking about. And moreover, your claims against them are based entirely around a straw man. I do not know of a single proponent of the neurodiversity paradigm that willfully ignores the realities of disability, often much greater than their own. I repeat: nobody does this that I have ever been aware of. This entire argent against neurodiversity activists is based on deeply rooted misunderstandings of what it is we are arguing for. I'm not naive enough to deny that there are some who actually do believe that autism is nothing but rainbows and unicorns, but I don't know anyone like that and those that do believe that autism is somehow exclusively a brain difference that should only be celebrated is doing us all a great disservice. And before you just assume that I'm another one of those straw men, my autism is not all good. I'm reminded daily that I have a disability in ways that I need not explain to anyone in a comment section. And moreover, my son is autistic, non-speaking with various developmental delays, you know, the "low-functioning" ones that you hold up as "real autism." Sorry, but even having to deal with "low-functioning" autism daily is not enough to convince me that the neurodiversity paradigm is wrong. You have to properly understand it and few opponents of it actually make ant effort at all to understand it.Extremely Accurate Newshttps://www.blogger.com/profile/15497878061785032383noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-13151346143324774852017-06-01T15:42:58.474-04:002017-06-01T15:42:58.474-04:00Greg, I can't speak for any particular scienti...Greg, I can't speak for any particular scientist but I think what's referred to is the idea that biomarker tests may reveal a dozen genetic conditions that result in autistic behavior (like Retts or Fragile X) I don't think many people imagine the ASD diagnosis itself will disappear.John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-91884792266518772732017-06-01T15:35:30.805-04:002017-06-01T15:35:30.805-04:00Thanks for providing the links to that information...Thanks for providing the links to that information. I am in full agreement that the more broadened diagnostic criteria makes sense. Some people, however, seem to be under the impression that all signs point to another coming split. One researcher at IMFAR describes autism as a "Snapchat diagnosis" that will disappear. Can't help but be worried hearing about that. Especially given I don't have access to the minds of the scientists who will decide how it is diagnosed. <br />http://www.sfautismsociety.org/blog/autism-is-a-snapchat-diagnosis-its-going-to-disappear-reflections-on-imfar-2017Extremely Accurate Newshttps://www.blogger.com/profile/15497878061785032383noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-21071545791686079722017-06-01T14:08:20.094-04:002017-06-01T14:08:20.094-04:00John, Thank you for once again putting into though...John, Thank you for once again putting into thoughtful words what I have tried to explain to others. Your insights and writing have helped my grand daughter and I navigate to a much happier and satisfying life for her. Accepting her uniqueness while encouraging her to relate to the world in ways that increase both her enjoyment and independence. I don't know how many lives you have changed and improved-but I know how profoundly you have helped us. <br />FashionFerret40shttps://www.blogger.com/profile/02206594382985595911noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-501844180352378792017-06-01T11:59:38.123-04:002017-06-01T11:59:38.123-04:00That was very well said. It is a cohesion of many ...That was very well said. It is a cohesion of many of the thoughts I have had for some time. As a parent whose child is intellectually bright without testing that way and who will surely be independent but needs a lot of understanding for his communication issues, who has struggled mightily with anxiety, processing, rigidity, and social misunderstandings, but who continues to persevere, progress, bring us joy, and bring a unique perspective on the world to those who take the time to know him, I have looked at all of the sides in this issue. You are absolutely correct in your assessment of the situation as it now stands and I appreciate your willingness to speak to the community as a whole. If we joined together with respect and some common goals, just think of the good we could all do.Ann Jarrell Westhttps://www.blogger.com/profile/17117937940198421944noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-8642650015109788842017-06-01T11:07:17.338-04:002017-06-01T11:07:17.338-04:00Greg, if you go to the IACC website ( iccc.hhs.gov...Greg, if you go to the IACC website ( iccc.hhs.gov ) you can download the summary of advances and the annual reports on autism research for the past few years. Biomarker studies are one area of focus. You can also search on the PUBMED database, which is a free index maintained by NIH.<br /><br />Hundreds of genes have been implicated in autistic development. There are some genes associated with very severe impacts including ID. Other genes are "across the board." Same for some of the other studies. This past year, for example, a study found an association between what infants chose to look at (people or mobiles) and later autism diagnosis, and there again the level of impact was across the board. That's in the IACC reports.<br /><br />With respect to "unfairly favoring" the upper end of the spectrum the answer is that the broader criteria for diagnosis are supported by the science, and what's happened is that now you have a larger pool of people with less visible disability overshadowing the formerly small pool of more visibly disabled individuals. I don't think it's a matter of fairness so much as evolving knowledge<br /><br /> John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-54268122516736780782017-06-01T10:39:14.965-04:002017-06-01T10:39:14.965-04:00John, could you point the way towards any online e...John, could you point the way towards any online examinations of these biomarker studies you're referencing? I'm interested in seeing anything about this. I really wish more researchers, like those who were involved in the decision to create a single diagnosis in the latest DSM, would weigh in on these debates. What does the research actually say about real commonalities between all of us on the spectrum versus those who think the diagnosis unfairly favors the so-called "high-functioning."Extremely Accurate Newshttps://www.blogger.com/profile/15497878061785032383noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-19972821772987706232017-06-01T09:34:55.299-04:002017-06-01T09:34:55.299-04:00Wow, this is exactly what I'm trying to explai...Wow, this is exactly what I'm trying to explain to people on internet: You have syndromic and idiopathic autism. Not. The. Same.<br /><br /><a href="https://goldenslot.gclub-casino.com/" rel="nofollow">โกลเด้นสล็อต</a><br /><br /><a href="https://www.golden-slot.com" rel="nofollow">goldenslot</a>UplayOnlinehttps://www.blogger.com/profile/07056159688537638797noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-85577003512793502152017-06-01T07:59:17.576-04:002017-06-01T07:59:17.576-04:00I will accept whatever concept you have about auti...I will accept whatever concept you have about autism, as long as you are autistic and accept me as I am.Fysiohttps://www.blogger.com/profile/02816773055258601325noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-18157017138318811952017-06-01T07:41:32.962-04:002017-06-01T07:41:32.962-04:00Hi John Elder Robison,great post, however I think,... Hi John Elder Robison,great post, however I think, if we see autism-- at its heart as a stress adaptation disorder which at its phenotype core is a difference in information processing and which ultimately effects communication first and foremost when impacted by stress--- then we can see that different levels of the spectrum are looking for different levels of stress intervention. <br /><br />Some are looking for outside changes of social interventions (acceptance since isolation is the worst and most devastating form of oxidative stress), some are looking for sensory interventions (reducing offending stress-producing sounds and lights and also being allowed to do stress-reducing stimming and sensory diets). Whilst others are looking for internal ways to reduce stress such as nutrition, medication and sensory (OT) and play therapies. Everyone is always looking to be their best versions.<br /><br />Being treated like you are broken, instead of as an amplified personality. And trying to be forced into being a "normal information processor" (a stoic personality which we can never be) is part of the harm and the mistakes of our current scientific framework (of assuming "best" is the average). Our current scientific model does not take neurodiversity into consideration. A linear model reduces that factor to the average, and the average obfuscates the needs of the periphery. <br /><br />You are right, when the scientific community have no answers (andusing the wrong framework of science) this makes so many people so desperate for answers and lost in guesswork. I hope we do better. <br /><br />My suggestions are within the working theory of "Peripheral Minds of Autism". And can be found on my blog. <br /><br />Peripheral Minds of Autism <br />https://peripheralmindsofautism.wordpress.com/presentation/Lori Hogenkamphttps://www.blogger.com/profile/11980387046181267402noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-74851210289619644232017-06-01T06:26:19.132-04:002017-06-01T06:26:19.132-04:00If Asperger's was not on the autism spectrum I...If Asperger's was not on the autism spectrum I would never have been diagnosed. I would never been able to learn about my symptoms, learn new skills and I would still be living with my parents. Some of us don't make it like others do. We don't have those gifts. <br />Even if Aspergers was a separate diagnosis I doubt I still would have been diagnosed because it wouldn't have the popularity it has had. The symptoms are still very similar between autism and HFA. I have severe sensory problems, gut problems and have always seen myself as more classic than AS. <br />Hans Asperger also discovered autism first. The world has just grown up on the Kanner description which I think was too negative. All those kids growing up in institutions, the higher functioning being misdiagnosed as schizophrenic or bipolar and given harmful drugs they didn't need, parents forcing their kids to be normal, even Marie Ann Kennedy's lobotomy might not have happened. How many AS kids were given lobotomies or sterilised? How many people could have avoided mental health issues if autism wasn't looked down at so much and had a broader spectrum? Your perfect model for autism would guarantee these horrible things that happened to autistics throughout history would continue. <br /><br />Now I'm not major in the neurodiversity camp, I just do the best with what I've got. But neurodiversity has helped employers see the autism advantage and quite honestly that's the only way I could ever get employed. <br /><br />I also don't understand why the autism community can't have unity. We just have to open up our freaking minds and get outside of the world in our heads. If a far left person like me can somehow detach from all the left-wing sensationalism and learn to see a conservative's world view then surely parents and advocates can shake hands.alonsyhttps://www.blogger.com/profile/11669022593151942806noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-22944870530368978682017-06-01T03:45:37.920-04:002017-06-01T03:45:37.920-04:00Wow, this is exactly what I'm trying to explai...Wow, this is exactly what I'm trying to explain to people on internet: You have syndromic and idiopathic autism. Not. The. Same.Fysiohttps://www.blogger.com/profile/02816773055258601325noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-48390479093261230882017-05-31T21:37:08.505-04:002017-05-31T21:37:08.505-04:00Coby, to answer your question I think it's cle...Coby, to answer your question I think it's clear from the history that the condition long predates the diagnosis. George Frankl and Anni Weiss were Asperger's teachers in the Vienna clinic, and Frankl later shared his insights with Leo Kanner in America. They notes that autistic behavior was observed for a long time before being specifically characterized. John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-15887609135141470982017-05-31T20:51:17.480-04:002017-05-31T20:51:17.480-04:00Excellent article. Thank you for summing that up.
...Excellent article. Thank you for summing that up.<br /><br />I do wonder about the comment "Per the diagnostic standards if you do not have a degree of disability you are not autistic." Which came first, the diagnosis or the condition? Who decides where to draw the line, and why?<br /><br />Let's take the hypothetical example of people who have the genetic ability to see a seventh color, beyond purple in the ultraviolet range. But unfortunately this ability leaves them susceptible to developmental problems in the womb and as they grow up. Some of them regress and lose the ability to see other colors. Some can't see red. Some can't see yellow, orange, or green either. A few of them can only see the seventh color (we'll call it oinops).<br /><br />Where do we draw the line? Are only those who can't see warm colors disabled? Or those who can't see some color that others see, like red? Maybe we will only provide services to those who cannot see the normal spectrum of six colors, and only see in oinops, black and white.<br /><br />My experience has been that there are a lot of people in my family with a degree of disability, but most of us just present some eccentricities and some exceptionality. We display what you call the broader autism phenotype.<br /><br />The thing is that we all relate to each other and we all learn from each other. Just because we don't have autistic handicaps doesn't mean our minds don't run along the same rails. I would say figuratively that all of us can see in oinops, even though some of us can also see all six typical colors.<br /><br />It would seem to me that we need to differentiate between the sources of the autistic temperament itself and the handicaps that develop during gestation and the early years. My dad told me that his diabetes was due to a genetic susceptibility plus some life choices and events. I think the developmental half of the equation is where we should be looking for the causes of some of the more significant handicaps.<br /><br />I really appreciate this article. I agree with the commenter who pointed out that the AS controversy has as much to do with autistic people having misperceptions and meltdowns as it does with Entie insensitivity. But I am sure enjoying this autistic adventure, as we have been living it. We sure have learned a lot from each other. Can we do some more of that?Cobyhttps://www.blogger.com/profile/14180925089330811525noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-13844590473245041632017-05-31T20:13:07.228-04:002017-05-31T20:13:07.228-04:00Roger, thanks for your comments. I'd like to ...Roger, thanks for your comments. I'd like to address your proposed solutions, You first mention removing bio marker-identifiable conditions from the autism spectrum. That is the current practice and I expect it will happen as tests are developed and proven out, We will then have more narrowly defined conditions like Fragile X that are identified with a bio marker test, and said to produce autistic symptoms along with whatever effects they have.<br /><br />The argument for not diagnosing your so-called higher functioning people with autism presupposes that they would be found to have a different condition, and not what we presently call autism. So far the evidence is against that. For example, people like me show up as autistic in many biomerker studies and in those results I'm right alongside people with much more major impairments. That being the case, what would be the argument for different labels when the biology says we're the same?<br /><br />I think a lot of this will resolve with the development of more biomarker tests.<br /><br />Your third suggestion - to say autism is not a disorder - may be a matter of semantics. For most of us autism is and always will be a disability. Whatever gifts I possess, I am always aware of how autism also disables me. I would not call myself disordered, but I would say disabled. To change the term to autism disability would be reasonable, but to change it to "difference" is not in my opinion realistic, for autism is not just a difference. For some it's mostly disability while for others it's a mix of exceptionality and disability. Per the diagnostic standards if you do not have a degree of disability you are not autistic.<br /><br />I agree with you that more people participating in genetic testing would be beneficial both for them and for science.John Robisonhttps://www.blogger.com/profile/07407165016025447113noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-5369004273360796802017-05-31T17:18:08.647-04:002017-05-31T17:18:08.647-04:00Just to be clear Jonathan, you cannot "disagr...Just to be clear Jonathan, you cannot "disagree" with neurodiversity. It is a biological fact, there is no disputing that intra-species variation exists in every single species on the planet, and the human species is no different. You disagree with the neurodiversity paradigm. This is not "semantics" either. You cannot disagree with scientific facts. But the neurodiversity paradigm arises out of this biological fact, and the neurodiversity movement seeks acceptance of neurological variations in all their forms. I don't care why you disagree. We likely will never agree on anything, I promise you that. But please get your facts straight. Thanks.Extremely Accurate Newshttps://www.blogger.com/profile/15497878061785032383noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-41242617804014041372017-05-31T16:27:37.506-04:002017-05-31T16:27:37.506-04:00Well done (Samantha Craft of Everyday Aspergers) I...Well done (Samantha Craft of Everyday Aspergers) I agree. Cooperative approach and one voice. It is particularly hard when autistics call out or shame other autistics. Something I have written about and seen too often. Much can be accomplished through rational approaches and respect for others' perspectives and hardships. You bring up many good points that could each individually lead to long discussions. I myself have several coexisting physical and cognitive issues that make each day a challenge. We need more support and understanding, and less anger and division. Samantha Crafthttps://www.blogger.com/profile/14016694573644321812noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-36397057313079146642017-05-31T14:31:15.234-04:002017-05-31T14:31:15.234-04:00While I agree that what you are saying is a good i...While I agree that what you are saying is a good intention, I don't believe that it's realistic. As Roger Kulp says, the divisions in the autism community are too great in the autism community for all sides to come together and work for the common good. Many NDs believe that acceptance and accommodations will solve everything. Those who believe in the medical model of disability will want research for treatments or a possible cure. While all the sides may have a few common goals, such as acceptance and no discrimination, the goals are too diverse for all parties to come together.<br /><br />Even when autism speaks acquiesced to the basic demands of neurodiversity that they no longer have a goal of curing and preventing autism and they put two autistic people on their board of directors, they still weren't satisfied and still claim that AS was a hate group whose only goal was to exterminate them, which I believe proves my point. <br /><br />It's like the Israelis and the palestinian arabs. There are some issues on which two sides will never compromise on.<br /><br />I will never agree with neurodiversity or with what autism speaks has recently done. <br /><br />Everyone working together for the common good is a nice dream, but I don't think it's gonna happen.jonathanhttps://www.blogger.com/profile/14972394536850151087noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-48529255276930629862017-05-31T14:17:05.337-04:002017-05-31T14:17:05.337-04:00Great article, John. I totally agree. WOOF! Great article, John. I totally agree. WOOF! Jean Sunellhttps://www.blogger.com/profile/14481997918120260006noreply@blogger.com