I tend to like autistic individuals, but I hate autistic groupthink. I’ve been berated, banned, and blocked in and from autistic online spaces for my writings on autism. The bullying I’ve experienced in autistic spaces rivals or exceeds any I’ve experienced in schools or workplaces dominated by neurotypical people.
The neurodiversity movement is usually characterized as an advocacy movement that promotes the idea that autism, as well as other neuropsychiatric or neurodevelopmental conditions such as dyslexia and dyscalculia, are normal variations that have always been found among humans. But neurodiversity proponents don’t just endorse that as a statement of alleged fact, they make the normative claim that these differences should be embraced by larger society rather than be subjected to medical or therapeutic treatment.
In reality, the neurodiversity movement is a public relations campaign that emphasizes the many positive qualities associated with some presentations of autism—creativity, increased tolerance for repetition, enhanced empathy, superior ability to master content in specific subject areas, and exceptional memory—while erasing or minimizing the experiences of autistics who are severely disabled. The neurodiversity movement epitomizes groupthink. Let’s examine six of the problems with neurodiversity groupthink that will kill the neurodiversity movement.
1. In order to establish an in-group identity, you must do so in opposition to others who have perspectives that are different from yours. That means boundaries for values and behaviors must be drawn, and those who trespass beyond those boundaries must be expelled from the group. I’ve watched the neurodiversity movement grow larger in numbers and smaller in vision, compressed by oppressive boundaries of false beliefs and a rampant thirst for censorship and exclusion.
The in-group is composed of “good” autistics, the ones who march in lockstep with neurodiversity guidelines. They put the prettiest faces on the condition and promote autism as simply a different style of thinking. The out-group? Those are “bad” guys like former Google engineer James Damore. From the blogs I read, it looks like he’s been expelled from any potential membership in the in-group because he asserted that males and females have different skillsets due to biological differences. That perceived misogyny bars him from being a pretty face of autism. Autistic blogger and author Jonathan Mitchell? Expelled from the in-group because he supports finding a cure for autism. The irony of such narrow margins being set by a marginalized group would be laughable if it wasn’t so tragic.
2. A cornerstone of the neurodiversity movement is the assertion that autism is an exclusively genetic condition. This position is no longer tenable in the face of statistical and epidemiological analysis.
“It’s like a switch got flipped.” Those are the words my primary care provider uses to describe my experience of regression from Asperger’s syndrome to “low-functioning” or level three autism at age 38. In 2014, she’d watched in horror and perplexity as a long series of adverse reactions to pharmaceuticals and other medical treatments stole my ability to speak, read, and write, caused my sensitivity to sound to skyrocket, and decimated the few social skills I’d spent the previous decades mastering. For a long time, I stopped driving and even walking alone, because after my brain changes I’d become lost in the neighborhood where I’d lived for eight years. My genetic composition hadn’t changed. What had changed was my level of exposure to substances my body couldn’t metabolize. My brain, immune system, and microbiome had been transformed.
But, I don’t rely on personal experience alone to conclude that autism isn’t simply genetic. Anyone with the most basic understanding of medicine knows that no known monogenic disorder, which is a disorder caused by mutations in the sequence of a single gene, manifests with the broad scope and variability found in autism. Research has been unable to cleanly link autism with polygenetic origins either.
I’m a bit of a medical webinar addict, and I recently enjoyed a presentation by Craig Newschaffer, PhD, director of the A.J. Drexel Autism Institute. The webinar, entitled Four Things to Know About Environmental Autism Risk Factors, reinforced the obvious. Autism is a disorder that results from the intersection of genetic susceptibility and environmental triggers. This isn’t a subject of debate. It’s an epidemiological fact. Which genes and which triggers remain under investigation.
3. Another foundational belief of the neurodiversity movement, based largely on the erroneous writings of Steve Silberman, is that autism has always existed with the same prevalence we see today. This is clearly not the case. In Neurotribes, Silberman makes a critical error. He conflates the condition formerly known as Asperger’s syndrome with autism. Silberman successfully makes the case that Asperger’s has been part of the human condition, at least in the Western world, for a very long time. Although the authors of the DSM-5 rolled them together, Asperger’s, now roughly equivalent to level one autism, and level two and three autism aren’t the same condition. Research has shown that there are differences in the patterns of brain connectivity in people with the condition formerly known as Asperger’s vs. people with autism. Asperger’s has been around awhile. It isn’t necessarily negative or disabling. Autism—well, that’s a different story.
Neither better diagnosis nor the historical institutionalization of autistics can account for the increase we’re seeing in autism rates. A UC Davis study showed an increase of 600-700 percent in cases of autism between 1990 and 2006. In 1975 there were 193,436 people in state psychiatric hospitals in the United States.1 The population of the US in 1975 was 216 million. In his webinar, Dr. Newschaffer indicated that the current prevalence of autism is 1.5% of the US population. In 1975 that would have translated to 3,240,000 American autistics. But between 1975 and 1984, autism was diagnosed in only 4 of every 10,000 people. I know there were missed diagnoses in the seventies and eighties. I was born in 1975 and was one of them—but over three million missed diagnoses or misdiagnoses, and almost zero documentation of over three million people exhibiting autistic behaviors? I don’t think so.
4. Another problem with the neurodiversity movement is its insistence on the use of identity-first language. That means requesting that people with autism be called autistic, rather than being called, well—people with autism. The reasoning behind this is that as a condition that affects one’s neurology, autism is seen as a primary, enduring quality that shapes an individual’s entire experience of the world. One doesn’t carry autism with them, their autism permeates their existence. I tend to use the word autistic because it’s less cumbersome and more succinct than “person with autism.” My choice of that verbiage isn’t a political act.
We don’t see this kind of over-identification with other neurological conditions. People with multiple sclerosis, epilepsy, or Alzheimer’s don’t engage in tedious arguments about identity-first language. While MS and Alzheimer’s are generally understood to be exclusively negative, some people with epilepsy report intense spiritual experiences that can be interpreted as positive, so the identify-first campaign isn’t simply about a condition’s ability to confer gifts as well as limitations. There’s something more going on, and I think that something more is the persistent misperception of autism as an inevitable and exclusively genetic state.
Once we acclimate to and internalize the fact that autism isn’t inevitable or exclusively genetic, we can stop over-identifying with it. That over-identification sets up boundaries and limits that aren’t helpful. If something is viewed as inevitable, it follows that it’s unchangeable. I’ve achieved an enormous degree of healing since my regression four years ago, and I’m confident that with more time, more nutritional support, more anti-inflammatory supplements, and more restoration of my microbiome, I can return to my baseline.
5. “But if you took away my autism, I wouldn’t be me!” neurodiversity proponents cheer. “Yes, you would, and no, you wouldn’t. And that’s all okay,” I counter. Every human on this planet is no more and no less than a collection of causes and conditions. These causes and conditions culminate in certain manifestations, thoughts, behaviors, and experiences at any given moment. We have no inherent, independent, unchangeable, enduring selfhood as such. To cling to a false concept of an inherently existent “me,” especially if any aspects of that “me-ness” can be hurtful to or cause division from others, is a very destructive idea.
6. The neurodiversity movement is culturally biased at best, racist at worst. It’s now well known that autism didn’t exist in Somali communities before Somalians migrated to Western countries. There’s no word for autism in the Somali language. A study shows increased risk of being diagnosed with autism overall, and an increased co-morbidity of intellectual disability (called mental retardation in the study) in children of US-born and internationally born women of color when compared to US-born whites.
The presentations of autism seen in Somali communities and other communities of color are frequently more severely disabling than the autism found among white people. I’ve often wondered to what extent my African ancestry played a role in my regression. Still, I’ve been attacked by white neurodiversity proponents for merely suggesting that experiences of autism vary in severity. They take an almost narcissistic position that presumes that all experiences of autism are identical to their experience of autism. It adds fuel to the abusive dynamics of autistic groupthink.
I’ve read blogs by white Aspergerian autistics claiming that sensory overload is the only reason for meltdowns and self-harm. I have lab results demonstrating that I’ve experienced elevated levels of inflammation and oxidative stress. I know meltdowns and self-harm can be caused by changes in the brain even when overstimulation is absent. When the inflammatory cytokines in my brain are activated, I can be sitting in absolute peace and silence and still feel compelled to smash my head to counter the pain and pressure inside my skull.
Neurodiversity proponents respond to my report with one the following responses: 1. Erase me from the conversation by pretending that autistics like me don’t exist. 2. Tell me that I’m experiencing something other than autism. 3. Tell me I still need to accept myself as is and make no efforts to heal what is clearly a cycle of cell death in my brain.
Mind you, no one in the neurodiversity movement is paying my bills, and no one but me is managing my fractured interpersonal relationships. Nevertheless, these autistic strangers on the internet feel entitled to judge me and condemn my efforts to heal myself of this profoundly debilitating condition. It’s interesting to contrast the norms and values in autistic communities with the norms and values in other communities.
In Deaf communities, it’s perfectly acceptable for adults to choose to have cochlear implants or use hearing aids. It’s also acceptable for Deaf people to reject these devices and rely exclusively on sign language. Neurodiversity proponents offer no similar latitude for adults to make autonomous decisions about how or whether they want to experience autism. Groupthink rules.
What’s a movement to do when its foundations collapse? Will the text under the rainbow-colored brains on t-shirts change from Celebrate Neurodiversity to Neurotoxins are Nifty? I’ll be less facetious for a moment and say that this is a time of serious reckoning for those of us diagnosed with autism. We have to accept that we are the canaries in the coal mine. Our bodies and brains reflect the human fallout of life in a toxic world.
The human brain is so complex that in some cases it can withstand a great deal of environmental modification and still get some of the most critical jobs done. Some changes to the brain enhance it, endowing it with certain gifts, often of an artistic or mathematical nature. Those who advocate in favor of neurodiversity rely on this fact to promote their agenda.
But we have to recognize that not all environmentally modified brains turn out well. Some of us can’t perform the fundamental activities of daily living independently. Some of us are caught in a loop of sickness and self-harm and engage in biting or other types of violence against other people.
I propose that autistic people move beyond tyrannical groupthink. We should balance promotion of our talents and skills with honest acknowledgements of our environmentally induced challenges. We should make room for more perspectives. We should support more research into the environmental risk factors for autism so that the most incapacitating presentations can be prevented. We should also support more research into modalities that can heal the most severely disabled among us, or any among us who choose healing. We should move towards unity with the rest of the human race rather than division, by emphasizing our humanity over our autism.
We are beautiful, we are complex, we are worthy of love, and we are entitled to integration into our communities and workplaces. We must move forward with a commitment to truth and a dedication to not only our own well-being, but also to the well-being of those with whom we interact. In embracing truth, we embrace a commitment to growth, maturity, and harmony.
The same problem exists within the hearing voices movement. People have been disrespected, their experience has been dismissed. Unfortunately that has led to a desire to be seen as ‘normal’, on a ‘diverse’ spectrum – and people often defend experiences that are not pleasant at all and certainly not valuable. To me it removes agency, in much the same way that the bio-medical model does.
We can employ simple mind strategies to create better experiences in the mind – I use a combination of Neuro Linguistic Programming and mindfulness, techniques I used before I heard voices. They are very successful at preventing psychosis – delusions and extreme states… an ‘alternative reality’ I would not wish on anyone.
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Why does Allen Frances say then that the increase in autistic cases is due to looser diagnostic criteria and not because more people are becoming truly autistic? He wrote the DSM himself so he should know. The problem with a “spectrum” is that with some effort you can put virtually anyone on it, so it is only fair that the concept of a spectrum is criticized. Soon, none of us will be normal (or as you say “neurotypical”). What is normal anyway? Clearly the author of this article is not a classic case of autism or she wouldn’t have been able to write the article. Like AT ALL. As for neurotoxins including psychotropic drugs, the damage they cause is very real but it is no more than that. No need to suggest it causes autism or makes it worse. It’s just brain damage, and it can happen to anyone. Finally, those lab results the author talks about are totally worthless. No psychiatric illness can ever be measured with lab results. That goes for autism too.
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You are viewing the term “spectrum” entirely wrongly. http://www.autismdailynewscast.com/spectrum-part-1-autism-spectrum-not-scale/29015/paddy-joe/
I completely disagree that because a spectrum exists you could put anyone on it. I can’t bear the “we are all a little bit autistic” statement as it undermines the difficulties of those who are autistic and is simply not true.
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I vehemently disagree with this article and have written an open letter in response to it:
https://whoneedsnormalcy.blogspot.com/2018/04/an-open-letter-in-response-to-mad-in.html
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The word “disappointing” is insufficient to describe this article. I began writing for Mad In America with the belief and hope that those occasional “antidepressants cause autism” articles were misguided attempts at finding an alternative framework to that of mainstream of psychiatry. I was convinced that the staff (and community) merely needed to be educated about the perspectives of the Autistic community and the broader neurodiversity movement, that if I made efforts to bring up neurodiversity in multiple articles, that over time a mutual understanding can be reached.
I am now convinced that I was wrong about trying to engage with Mad In America, because no such change is possible at this time. By choosing to publish this manifesto of targeted bigotry, the chief editor has demonstrated a hostility not only to the Autistic community but to the entire neurodiversity movement. The message promoted here is that our existence is wrong and any opinion to the contrary will be matched with an equal or greater inclusion of additional hate speech against us.
There is nothing scientific, critical of psychiatry or the drug-based paradigm, or relevant to social justice in this article. It is a manifesto of hate speech against the Autistic community. The decision to publish it demonstrates that the person or people who made that decision are either as unscrupulous as The Mighty and will just publish anything, or themselves hate Autistic people.
April is Autism Acceptance Month, also knows as “awareness” month, also known as Hell Month. We are already inundated with messages that we are burdens, that we shouldn’t be the way we are, that our existence is a medical condition in need of a cure. If you don’t receive much more of this backlash, I propose that Autistic people are too busy fighting other fights. And besides, this article doesn’t offer anything in the way of a new perspective we haven’t heard a thousand times before.
This article warrants an official editorial retraction and apology, though I have no confidence that such an action will be taken. Until it is, I see no purpose in continuing to provide free content Mad In America or increase its web traffic.
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The autism rights movement made a huge mistake allying with the anti-psychiatry movement. Autism is something that definitely influences identity. Autistic people have “special interests” (hate that term) and stims, for example, that are usually subjectively enjoyable and can form the basis of a person’s identity; as well, autism is a social minority and many people are reminded of other minority groups who were forced to assimilate. The reason for the autism depathologization/anti-cure movement is more complicated than that, but simply put, it hurts to have your identity be told it is “wrong” or as you rightfully point out, the entire world is telling you your “existence is a medical condition in need of a cure”.
The anti-psychiatry movement, with the exception of Szaszism (who, by the way, didn’t like being called anti-psychiatry), isn’t based on applying similar ideas to other psychiatric labels. It is based on ideas like, “there isn’t an objective test” (well, there isn’t one for migraine, either) or “antidepressants are evil!!!!”. While the psychiatric establishment should be held to account for its pathologization of our existence, sending our kids to conversion therapy, sending the socially anxious among us (almost all of us) to “social skills” classes that teach us our way of socializing is wrong rather than self-acceptance, and for denying the possibility we could have mental health problems because they incorrectly think our existence is already one, the anti-psychiatry movement sends a harmful message to the most vulnerable of us.
Other psychiatric labels simply don’t follow the same logic as autism. Like, I have “pure O” OCD, a terrible… thing (to avoid censors) which taunts me with my worst fears, making impossibilities seem like undeniable realities, making me depressed, anxious, and self-hating. OCD, at least obsessions (IDK much about “pure C” OCD and a lot of people have both Os and Cs), is literally a person fighting off thoughts they don’t want to have. It is the opposite of someone’s identity. Whereas, being an autistic trans woman is Who I Am. I WANT (and need) to pursue my passions and to have friends who accept me for me. I WANT (and need) to transition to affirm my female gender in the way I see fit.
I think we can send both the message that autistic people are fine the way they are AND the message that they can seek help to better their life (ideally, help that doesn’t pathologize our existence). We don’t have to ally with a movement that thinks being unable to have a boner is worse than not eating, not sleeping, having your flight-or-fight response activated every waking moment, fending off customized intrusive thoughts every day, and legitimately wanting to die.
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Anyone who sees MIA as an anti-psychiatry forum is mistaken. Once again, “autism” is not defined, and it is unclear whether writers critical of the article consider it a “neuro” (i.e. physical) issue. If they do, then there would be no natural alliance between the AP movement and the “autism” movement. The ongoing confusion here is the product of words and labels being used which seem to have no consistent meaning.
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“Not eating, not sleeping, having your fight-or-flight response activated every waking moment, fending off customized intrusive thoughts every day, and legitimately wanting to die” are all nasty. For me, these were created by the drugs I was told to take by a psychiatrist. Like many others.
If autistic people want the right to refuse drugs that make them feel worse instead of better they might still want to look into anti-psychiatry. Though this is NOT an anti-psychiatry site as Robert Whittaker has made clear.
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Please come and write for the Aspergian. Please.
http://www.theaspergian.com
I’m Terra, the founder. Your brain is amazing.
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Hi Terra, This is Claudia. I have been written Blogs for Dr. Manuel Casanova’s website. I’ve indeed written a very interesting piece on Dr. Hans Asperger. Would you like to read my work and offer me the chance to write for the Aspergian? I would love to.
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Yes! Please write me at lynchburgcp at g m a i l dot c o m and link me to your blog, or use the “contact” feature on theAspergian.com
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Sorry, I didn’t realize you think autism is a choice and that autistics shouldn’t make that choice. Hard pass, Claudia.
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April is April fools’ month. Also known as unawareness or ignorance month. April fools’ day falling on Easter Sunday this year must make it kind of special. Fools and religion, after all, go together.
Wow, Twilah! An angry article on the web, and a strident disapproving comment as well. You must have hit a nerve. I can’t help but think that there is some truth to what you say when people are given to having such strong emotional reactions to receiving it. I’m just seeing intolerance in that reaction, not acceptance.
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Frank, you fundamentally misunderstand. I am not emotional, triggered, or anything of the sort. Those who have expressed a similar perspective to mine don’t appear to be coming from a place of emotion either.
I am not criticizing this article because “it makes me angry”, I am disappointed in Mad In America for undermining its own credibility, which will have measurable consequences hindering our ability to fight back against forced psychiatry. My credibility is under threat for being published here, as is the whole field of Mad Studies, becaue anyone who criticizes a citation by saying “that source also publishes pseudoscience and hate speech” they will be correct.
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I would imagine that the thing to do would be to try to get your own countervailing thesis published rather than abusing Twilah for her views. Her examples I thought pretty weak. Somebody was making skills out to be gender linked, and another was seeking “a cure” which presumes “disease”, and so they were expelled from what she saw as “the in-group”. Good decision “in-group”. Alright, but then there is all this antipathy, and if it isn’t directed at her, where is it directed? The article doesn’t need an editorial retraction. We know it doesn’t reflect the views of MIA. Instead we should have some of those other views published here as well. You disagree? Why don’t you put your credibility to the test by publishing a post. Don’t want to do so? Alright, that leaves us with Twilah’s perspective. I wouldn’t be disappointed in MIA for not retracting somebodies expression of their feelings. I would be disappointed in you for not publishing some kind of critique of her position, and defense of your own. Otherwise, she can have this slot by default if she wants it.
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The solution you have proposed is to continue providing Mad In America with free content.
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Or you can refuse to write a rebuttal to Twilah’s piece. That is your choice.
Her analogy to deaf communities is a good one, I think. Many deaf people don’t view themselves as disabled. They have their own subculture with its own language, stories, plays and literature. A culture unique to the deaf.
They have the right to try to integrate themselves into mainstream society or not. Those on the Spectrum face a similar choice. Twilah chooses integration–but she doesn’t condemn anyone for choosing the other.
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I did write a rebuttal, and posted it in the comments.
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“Many deaf people don’t view themselves as disabled.”
Actually, many Deaf people ^do^ view themselves as disabled, just not as having an inherent impairment. There is a difference, you know. And the next time you discuss members of the Deaf community, please capitalise the ‘D’ in ‘deaf’. This proponent of Person-Centred Language thanks you.
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But many Deaf people in my observation also DON’T view themselves as disabled. In my experience, there is a wide range of ways people view their Deafness, and it would be wise for those not a part of that community not to speak for “them.”
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My credibility is under threat for being published here, as is the whole field of Mad Studies
“Mad Studies” has little credibility in many people’s view anyway, as it is based on the imposed label of “madness,” which is mentalist (or sanist).
The contradiction here for me is that “neurodiversity” seems to be based in physical, neurological conditions, and/or in equating these with “madness.” As such, if true, such a discussion does not belong on MIA, as it deals with neurological issues, and as we know, psychiatry deals only with fake diseases and “conditions” of abstractions such as the mind — not the brain. So again, am I missing something?
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April Fools Day originated as an atheist’s holiday. In France, after the Revolution everyone celebrated the New Year on that day. After it was safe to practice religion openly again the French reverted to the Gregorian Calendar except the militant atheists who persisted on celebrating it on April 1.
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Well said Twilah. And I agree with greggieboy as well. Kind of surprised this got published by MIA, but glad it did…
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Now, because I truly give far too much benefit of the doubt and far too many assumptions of good faith, I’ll explain bit by bit everything wrong with this article. This way, the publishing staff have no choice but to either say they do not read the comments, assume willful ignorance, or understand why publishing the article was a mistake, from not only an ethical point of view but also due to the article being poorly researched and poorly written.
1. The title
Neurodiversity is the diversity of human brains and minds. Neurodiversity will continue to exist as long as there are two humans alive in two bodies.
If you meant the neurodiversity *movement*, first of all you should actually say that, and second, someone disagreeing with the tenets of a movement doesn’t mean the movement is “dead”.
2. Being removed from an online group is not “bullying” . If you enter a Facebook group made for Autistic people to celebrate autism, and share your writings on why being Autistic is bad and wrong, of course you are going to be removed.
Make a group called “I hate being autistic” or something and maybe you’ll find people whose views are more aligned with your own.
3. The first paragraph defining the neurodiversity movement is actually a decent description, but the second (beginning with “in reality”) is full of factual errors and flimsy straw man arguments.
Every neurodiversity activist I know of recognizes that neurodivergent people face challenges, discrimination, and disability.
We don’t assert that being neurodivergent is inherently good, just that it’s *not* inherently bad as psychiatry claims.
4. Building an intentional community and movement around a set of core values isn’t groupthink, it’s called… a movement.
If you actually spent a reasonable amount of time engaging in constructive conversation in neurodiversity movement spaces, rather than just joining Autistic groups and getting banned for hate speech, you would notice that we disagree with each other all the time, as people in every social movement do.
5. Of course the neurodiversity movement is going to exclude from leadership anyone who doesn’t think neurodiversity should be accepted. Again, it’s a movement with core values.
Is Black Lives Matter engaging in “groupthink” by not allowing white supremacists into their planning meetings? Are LGBT centers “censoring” homophobes?
Is Mad In America committing an act of atrocity every time a psychiatrist is rejected from publication for saying that all drugs are great and psychiatry has nothing bad to criticize?
6. The author conflates all activities within an Autistic support group / safe space as representing activist action in the neurodiversity movement.
One gets removed from a movement for espousing beliefs that directly contradict the core values of the movement.
One gets removed from a support group for telling group members that they should kill themselves.
One gets removed from both for being a stalker.
7. “A cornerstone of the neurodiversity movement is the assertion that autism is exclusively a genetic condition.” False. This is simply false! The author clearly did not bother to do any research on how members of this movement actually define it, which makes the entire article a straw man fallacy.
There is no tenet of the neurodiversity movement that cares at all about the origins of those differences constructed as madness or neurodivergence. Especially not one that singles out autism. Perhaps you are confusing neurodiversity and autism again?
8. Asperger syndrome is just another name for autism, like couch and sofa or fiddle and violin. The people who coined the term specifically designed it that way.
You can’t “regress” from one to the other, because they’re the same thing. “Levels” are overly simplistic and pathologizing.
And if you disagree with that because it’s the way DSM describes autism, then I feel obligated to ask (1) what are you doing on Mad In America if you take the DSM as gospel, and (2) are you aware that the DSM is a glorified insurance manual?
9. The author mentions being unable to speak, unable to read, unable to write, and lacking social skills. None of these are characteristics of autism.
10. The author does not understand the definition of the word “fact” but uses it anyway. Drexel Autism Institute is neither reliable nor a factual source.
11. Neurodiversity is based on Steve Silberman’s writings? That’s the most ridiculous misinterpretation I’ve ever heard! Most of us don’t even like the guy!
He wrote one book two decades after the movement started, a book which happened to have “neurodiversity” in the title and sell well. A father of the movement, that does not make.
12. In her criticism of “combining” Asperger’s and autism, the author demonstrates exactly the problem with separating them, by asserting a position of inherent supremacy of people with one label over people with the other.
13. The author asserts an “increased autism rate” which no study in any country has ever demonstrated to exist.
14. The neurodiversity movement does not insist on identify-first language for every neurotype. Again the author is confused between the Autistic community and the neurodiversity movement.
15. The author completely misrepresents the reason for Autistic-first language, despite the fact that it has been written about extensively by many writers.
The problem with “person with autism” is that it was intentionally engineered to be similar to phrasing such as “person with cancer” and imply that being Autistic is a horrible disease that one must be cured of.
16. In header #5, the author suddenly argues for an entire new philosophical framework for understanding human existence, a framework which was not rhetorically justified in the piece, does not relate to the theme of the piece, and does not refute any tenet of the neurodiversity movement the author is arguing against.
17. The neurodiversity movement does have a lot of white people, but we are aware and actively working to prop up leading voices who are people of color such as Kassiane Asasumasu, Nick Walker, Lydia Brown and myself.
18. Asserting that Somali languages did not have a word for autism because no one was Autistic is as logically sound as asserting that there were no gay people in the world until 1869.
19. Under the same header in which the author criticizes the neurodiversity for being too white and therefore racist, she also claims that people of African ancestry have a genetic racial health inferiority to whites.
20. At the point the author labels autistic groupthink as narcissistic, she has neither defined autistic groupthink, nor demonstrated that it exists, nor argued that being narcissistic is a bad thing.
21. I have never witnessed any Autistic person asserting that sensory overload is the only possible cause of a meltdown.
22. Migraines are not autism. I have no issue with anyone “recovering” in the sense that they do not have migraines any more. Calling migraines migraines may even help you get better medical treatment.
23. No one with even a cursory familiarity with the Deaf community would describe the conversation about cochlear implants in such simplistic terms.
24. No neurodiversity activist wishes to increase pollution, poisoning or anything of the sort. In fact, we fight to protect the civil rights of people who have acquired a disability that way.
25. The author suggests that we “balance promotion of our talents and skills with honest acknowledgements of our environmentally induced challenges.” The neurodiversity movement already acknowledges both using the social model of disability.
26. The author advocates that a class of people should be “prevented”. This is blatant hate speech.
27. “Healing” is proposed as a remedy for disability. That is not how disability works.
28. Author contrasts herself as an assimilationist against the separatism of the neurodiversity movement, which is not a separatist movement.
29. Author contrasts herself as advocating for Mad/Neurodivergent people to be recognized as beautiful, complex, worthy of love, and entitled to community inclusion. These are all examples of changes that the neurodiversity movement has specifically advocated for.
30. Footnote citation is attributed to E. Fuller Torrey, founder of the hate group Treatment Advocacy Center. Neither a factual source nor a reliable one.
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Excellent response!
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Neurodiversity is the diversity of human brains and minds.
Minds are abstract and non-physical; brains are physical organs; as far as this discussions goes, ne’er the twain shall meet. So this makes little linguistic sense, any more than “mental illness.”
Anyway, I can see many of the contradictions you point out in the article. But the problem to me is that neither “neurodiversity” nor “autism” explain much to me, and much of what I believe I do understand is an attempt to conflate “madness” with brain dysfunction. If I’m wrong please elucidate.
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All excellent points, Au Valencia. To reinforce some of them, in speaking about the autistic movement, we are speaking about a movement–and movements take stands. And not for a second have I ever seen advocates take the stand that they are a separatist movement. And While obviously not the same as antipsychiatry, the overlaps between the autistic movement and the antipsychiatry movement are enormous. Personally, I am grateful to advocates like Nick Walker for recognizing this and asserting connections. Additionally, there is absolutely nothing in the original article that gives anyone reason to be believe that we are dealing with a “disorder”. Note the huge growth in the number of people diagnosed as on the autistic spectrum (which was given as evidence) can be understood in ways not unlike the huge growth of the number of people diagnosed as mentally ill–the point is that we have industries here in whose interest this growth lies and we have no pressing reason to attribute that growth to anything other than that. Correspondingly, if I might add a new point, while again of course there are differences–admittedly huge differences–in the antipsychiatry/critical psychiatry movment, we face similar objections from some quarters that some people (e.g., those labeled schizophrenic) actually have a disorder. However, behind this claim lays no facts. In neither case, I would add, would anyone for a second say that the people in question are not suffering and proferring help is not in order.
Now I totally empathize with someone who feels that they are being silenced or their personal experiences are being ignored. ANd while it is hardly for me to say, maybe this the question that the community needs to grapple with. At the same time, one’s experience is about experience. And that is a very different matter than “causation” and by the same token, a very different matter than whether or not something is a disease. For interpretations like this are not intrinsically part of “experience”.
As an outsider here, that is, as someone who is not autistic, there may of course be important considerations that I am not understanding. ANd if so, please enlighten me.
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A very frightening commonality is the issue of drugging “severely disabled” Autistic children. (I am not sure what the right way is to phrase that.) I was at a conference not very long ago where the presenter talked about how a particular psychiatrist ‘needed’ to prescribe anti-psychotic medication to ‘help’ an autistic child with ‘aggressive tendencies’. This presenter, realizing members of the audience might feel uncomfortable with this information, went on to assure the audience that this psychiatrist was a very good one who was very judicial about prescribing medications and would only do it if ‘absolutely necessary’. What struck me was how much I had liked the presenter and everything they had been saying up to that point. (They seemed to be such a respectful, compassionate and forward thinking person.) If I had not had any background in the area of these drugs, I would have believed the presenter that the drugs must be helpful, (for aggression….really???); just as the presenter seemed to believe it themselves. I guess I see this is an example of how trusting the general population is of psychiatric drugging; and is part of the reason why I think is is so important to work together with all communities who want to make changes in the area of drugging without informed consent, or other forms of forced treatment.
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“Asperger syndrome is just another name for autism, like couch and sofa or fiddle and violin.”
Actually, not quite. Although it’s true that no behavioural differences are seen to exist between Aspies and most Auties by adolescence, there are still structural differences between the brains of both groups as well as differences in early development.
“The people who coined the term specifically designed it that way.”
Incorrect. Lorna Wing and Judith Gould coined the term ‘Asperger’s syndrome’ to get help for people who were struggling, but could not get an official label of anything except, perhaps, borderline personality disorder or schizoid affective disorder.
“The author advocates that a class of people should be ‘prevented’. This is blatant hate speech.”
Correct, although Twilah Hiari is hardly the first to assert this, unfortunately. Temple Grandin has herself advocated that “the worst forms of autism should be prevented,” ironically not realising that she herself came under that definition as a young child.
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This has been an interesting discussion to follow. One question I have concerns the label of “neurodiverse.” I understand that people diagnosed with autism could be said to have different “minds” (thoughts, feelings, and behaviours) than those not so diagnosed. But as I understand it, autism is not associated with reliable, specific, and large-enough-to-be-meaningful brain/genetic differences, as recently described by Sami Timimi. Given this, my question is, why advertise autism as brain difference (neurodiversity)? A major theme here at MIA is criticism of the central assumption of the biomedical paradigm, namely that psychiatric diagnoses are medical diseases, and the ways in which this assumption manifests via the use of biomedical language to describe psychological experiences. Isn’t describing autism in terms of “neurodiversity” an example of this? Thanks for considering my comment, I look forward to any feedback on these issues.
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I have been trying to figure out how to personally address the entire, uncritical acceptance of “diversity” pushed by the Left. I understand that it seems to be a pushback against some of the uglier things from the Right, but sadly this unfettered celebration of all diversity will damn many into a lifetime of pain and dysfunction. I’m far more conversant in the push to uncritically accept ‘diversity’ in the area of hearing voices since my wife has d.i.d., and it saddens me to read some of the stuff from the Hearing Voices Network. I can respect my wife’s agency. I can treat her lovingly and kindly. I never treated her like she was crazy. I recognize that she is literally a genius and joke about me being the family ‘idiot’ now that our son is in a PhD. program. But that didn’t mean I had to celebrate her d.i.d. and all the pain and dysfunction that comes with it. I give my wife’s host and all her ‘alters’ my love unconditionally, but I also walk with her and gently move her toward a healthier existence as I have helped release her from the trauma, pain and lies from her past. But if I had uncritically celebrated her ‘diversity’ like I see being pushed by the Hearing Voices Network and what seems to be a similar move within the autistic community and elsewhere, she would never had a chance to experience a release from her trauma paradigm as she has begun to experience the benefits of being emotionally healthy and ‘securely attached’.
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Hi samruck2,
What I love about your comments is that you always seem to be speaking your truth as honestly and as candidly as you can.
I don’t feel I have enough experience to make comments about Autism, but in terms of people experiencing extreme states, I feel that there is such a huge variation of presentations, suffering, impairment, loss, course of recovery (or not) that comments made by some people seem to me to trivialize or ‘miss the point’ when it comes to the experience of others.
When I think of some of the impressions (stereotypes??) I have of people with Autism (e.g. truthfulness, high intelligence, ethical thinking, straightforwardness, lack of ‘game playing’ in social relationships etc), neuro-diversity seems to me to be a better descriptor for emphasizing all the positive traits that I wish more people had. (I could compare this to the ‘sensitivity’ and ‘high ethical beliefs’ that often seems characteristic of many people who are susceptible to going into extreme states, sensitivities that I wish were more widespread in our world ).
However, it seems that some people who are described as, or identify with being Autistic, suffer or have difficulties functioning independently and autonomously in the world, and I would never want anyone to think I was trivializing their experience either.
So I guess I will go back to reading and learning from the author, Sami Timimi and also from those who have critiqued these authors so eloquently; to try and develop a more nuanced understanding of all the issues brought up!
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P.S. I am also very interested in hearing any responses to Brett Deacon’s question (above) about using the term ‘neurodiversity’.
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Brett: Isn’t “neurodiversity” an example of biomedical language? No. It is not.
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I would call it another example of neurobabble though. Neuro, as a prefix, is the trend word, with a lot biomedical jargon employing it. Once people thought, now they have neurons firing synapses instead. Want to cast blame? Darn little neuron.
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I didn’t buy this dress. My neurons made me do it!
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pushed by the Hearing Voices Network
Last time I checked, the Hearing Voices Network wasn’t mandatory.
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Frank, DSM-5’s rebranding of “mental disorders” as “neuropsychiatric disorders” comes to mind as a prototypical example.
Au Valencia, how does labeling autism as a brain difference (neurodiversity) not an example of biomedical language? I suspect I am not the only one who reads “neurodiverse” and hears “associated with or caused by an abnormal brain.” I appreciate you may not view it to mean or even imply this, but I imagine such an implication would be clear to many others.
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Maybe atypical is a better word. “Abnormal” sounds different in a negative way. I consider myself to be an atypical eccentric. In my early twenties I wondered if I had Aspergers. I acted a little like someone on he spectrum according to my psychotherapist sister in law. Now–off my drugs–I can pick up on social cues more readily and blend in. I don’t like sticking out like a sore thumb.
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Because you believe that any difference from the norm is an illness, injury, or otherwise unfortunate does not make it so, nor does that make it the definition of the word.
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I don’t think you get what he’s saying. Anything involving “brain” (neuro) is “bio.” Mind and brain are not interchangeable terms.
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The term ‘neurodiverse’ refers to all brains, the roughly 90 percent that are neurotypical ^and^ the roughly ten percent that are neurodivergent (which seems to be the term you meant).
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Where can you have come up with such statistics? As far as I know, there is no objective description or measurement of a “neurotypical” brain that is possible. So a “neurodivergent” brain, while I think can be a legitimate identity to choose, is not a scientifically observable phenomenon, and as a result, its frequency of occurrence is not something we can claim to know.
I personally find the term “neurotypical” to be to some extent demeaning, as it seems to imply that I have somehow gotten a “normal” brain and that therefore any struggles I may have are of less significance than the “neurodiverse” brain. I can tell you with absolute certainty there is nothing “typical” about how I have experienced life and I had plenty of struggles in school and elsewhere, even though my particular “brain” (if that is indeed the variable in question) allowed me to be quite successful in the educational environment and to scrape by socially, “it” has provided plenty of challenges in non-academic arenas. Of course, you could now decide (or I could) that I really am NOT neurotypical, that I’m “neurodiverse,” but again, that would be a decision of identity that I (or someone else) made, and not one that can be verified in any scientific manner.
I don’t believe there are “neurotypical” brains out there – my observation is that everyone’s brain is different and everyone has certain things in common, and our society is highly intolerant of certain personality characteristics or behavior, which leads to bigotry and discrimination against certain people who don’t BEHAVIORALLY fit what is expected, whether because of their brains or some other reason. Does neurology factor into that? No doubt. But until there is a means of drawing some kind of objective line between the “neurotypical” and the “neurodiverse,” I’m afraid these terms remain social constructs without any objective meanings. Like I said, everyone should feel free to identify themselves as they wish, but I’d appreciate you and others not choosing MY identity for me!
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“as I understand it, autism is not associated with reliable, specific, and large-enough-to-be-meaningful brain/genetic differences, as recently described by Sami Timimi.”
Timimi is very absolutely wrong and his public comments are highly damaging. He is saying that ADHD doesn’t exist either. Just for starters, some ASD brain differences:
dilated Virchow-Robin spaces, white matter signal abnormalities, plaque-like areas on the posterior horns of lateral ventricles, temporal pole abnormalities, reduced volume in anterior, middle & posterior callosal sub-regions, small than average size of body and posterior sub-regions of corpus callosum, increased amygdala volumes (in children), increased grey matter density, increased GM volume in frontal, temporal and parietal lobes and limbic system, increased cortical thickness in parietal lobes, abnormalities in the corpus callosum, pre-frontal white matter cingulate gyrus and internal capsule, to name some.
Sami Timini is a psychiatrist, he should stick to his own field of work and stop posting untruths across the internet and giving talks on his mistaken beliefs.
There is a movement among the authorities, (which may even have triggered the neurodiversity movement and using it to their own ends) to have ASD labelled as just a difference, as they are concerned with the epidemic of diagnoses and the demands on services that they don’t want to fund.
Stop trusting someone simply because they have a qualification. There are important findings on ADHD which I could also list, which proves wrong his assertion that ADHD is not a real condition.
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A Timimi presentation. https://www.youtube.com/watch?v=EzL9sAJmz54
It has to be one of the worst presentations I have ever seen. What an exercise in misinformation and personal opinion wrapped up as supposed science. Full of errors too. How does he explain sensory processing difficulties in autism! How does he explain low-functioning/severe autism? How does he explain low danger awareness? Difficulty understanding humour and sarcasm? Problems with executive dysfunction? Difficulties with self-care? Tell him to look up Frank Duffy’s brain scan evidence. Tell him to look at different qEEGs in autism. He thinks the genetic evidence is flawed (nobody is saying it’s genetic, but it is epigenetic in people who are genetically particularly susceptible to environmental triggering but also there is syndromic – genetic – autism). Let’s see him explain multiplex families. He says “autism does not equate to anything found in the natural world” (he’s wrong there too http://www.alloy.com/well-being/can-animals-have-autism/)
He claimed professionals don’t need to understand autism to help an autistic with anxiety. Professionals DO need understanding of autism to work with the anxiety. For instance, CBT has to be adjusted for autistics (see below). Plenty of evidence out there about that. If someone doesn’t understand the underlying condition they cannot effectively treat the person’s anxiety because they are not getting the nature of the obsessional mind and the predisposition to anxiety or why it is triggered. Autistics are different to neurotypicals! CBT has to be adjusted for autistics or be at best ineffective and at worst, potentially harmful: Prof Tony Attwood – https://vimeo.com/136207967 & The National Autistic Society http://network.autism.org.uk/good-practice/case-studies/cbt-based-groups-women-autistic-spectrum & https://iancommunity.org/cs/simons_simplex_community/cognitive_behavioral_therapy & NHS NICE Guidance see 7.6.1 – https://www.nice.org.uk/guidance/cg142/evidence/full-guideline-186587677 & Network Autism – http://network.autism.org.uk/welcome?pageback=http%3A//network.autism.org.uk/discussion/cbt-people-autism & http://network.autism.org.uk/good-practice/case-studies/cbt-based-groups-women-autistic-spectrum
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If someone whose real identity is unknown for the external observer says, “My autism is just a part of me. It is who I am, it is in the design of the brain, why does not that count for an explanation?” Then I would say to them, “That is fine; but you have just admitted that your autism is the most important fact about you. And you should not be insulted if I ask you what are the grounds for your belief?” But what I just described is what Neurodiversity can’t stand. The world is characterized by diversity. When you make the decision to call yourself “autistic” (or neuro-divergent) (or a member of Neurodiversity), you must have reasons. How autism, in computer terms, have wired your brain’s circuits? We are most responsible for our mental programming, our approach to the world.
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Removed for moderation.
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Loved this article. Dissenters can fret and vehemently disagree, but she is speaking her truth. As a parent of two people whom regressed into autism following an environmental insult, I know this is also the truth for MANY other autistics. Her information needs to be shared so others will understand that the term “neurodiversity” minimizes and trivializes the experiences of many whom have suffered similar regressions. Autism is not a blessing to everyone. It’s debilitating on countless levels for some. The life expectancy is short for some. Autism is not celebrated by everyone and there are terrifying and tragic statistics available to support the reasons why. If a person loves their autism and wants to celebrate it—that’s great for them; but don’t tell others how to experience it or berate them for disagreeing with your experience. That’s just an example of intolerance pretending to be tolerant.
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Your response NiKKi, seems like the exact viewpoint that most mainstream people have towards experiences which are labeled as “psychosis” AKA hearing voices, extreme states, etc.
IE:
“Ohh thats great if some people can find meaning from them but for most people its a debilitating and terrible experience!!!”
Also, Good Job on the rebuttal Au Valencia.
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to ariarommie,
I just wanted to make a comment about your reference to extreme states:
I would argue that seeing what a debilitating and terrible experience extreme states can be for some people, is not an attitude that separates ‘mainstream’ from ‘non-mainstream’ points of view; but rather can arise from the different kinds of experiences that people have or witness.
I believe what separates mainstream from non- mainstream points of view is more about how people in extreme states can be best supported.
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My own psychotic experiences were terrifying. To those who find them enjoyable–cool. Many don’t. That why Hearing Voices exists.
Going off my psych drugs has all but eliminated them, btw.
No thanks to those Psychiatric Humbug Pillshils!
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Tag yourself I’m “an environmental insult.”
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https://en.wikipedia.org/wiki/Paradox_of_tolerance
I have a right to exist in peace and I will not tolerate anyone who wants to limit my right to exist, period. I don’t care if it is a huge charity like Auti$m $peak$, the teachers who emotionally abused me with a diagnosis as an excuse, TERFs, people who only want to see a romanticized version of me instead of who I actually am (and punish me for being me), or the DSM and the American Psychiatric Association that created it. One of the classic “symptoms” of autism is rigidity and I am 100% proud to say I have it. ANYONE who wants me to not pursue my passions, stop rocking and pacing, want me to assimilate into society, give up my gender identity, not let me transition, want to victim-blame me as having “social communication impairments” instead of oppression, thinks my social anxiety is a good thing, or thinks my existence is a disorder (and/or thinks it is wrong to seek my treatment for my ACTUAL disorders) will not be tolerated. I refuse to be a punching bag.
It isn’t about autism being a “blessing”. I am an antitheist. The goal is to finally be at peace in a society that says my existence is wrong and enforces it in cruel, yet socially acceptable, ways.
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Don’t be shy to say it was vaccines (which I assume it was). The more people speak out about the research that exists showing that vaccines can and do cause ASD, the more the public will be informed.
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“As a parent of two people whom regressed into autism following an environmental insult…”
And if you had not vaccinated the second after vaccinating the first, you’d have found out that that hypothesis is absolute bulls###. The fact is that autism, despite not being genetic in the way that Rett’s syndrome, e.g., is, nevertheless seems to be heritable to a high degree. Take a look back through your family tree if you don’t believe me.
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I’m not informed enough to have an opinion on this topic, but as someone who is trying to learn, I would appreciate it if those who agree with the blog would address the actual points that Au Valencia made in their rebuttal. So far, I feel that Au Valencia has made a more compelling argument overall than the blog and its supporters have made.
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Au Valencia, you are wrong, I do not in fact “believe that any difference from the norm is an illness, injury, or otherwise.” And back to my original post, the label “neurodiverse” suggests the autistic brain is different from the non-autistic brain. How is it different from the norm? Does reliable scientific evidence indicate that autism is associated with or caused by reliable, specific, and large-enough-to-be-meaningful brain differences? If so, I’d be very interested to learn about this research. If not, why describe autism as a different brain? This was my original question and I’d appreciate hearing your answer.
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Brett – https://yourlogicalfallacyis.com/black-or-white
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So irritating when people reply to a direct question with a link. 🙁
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I can see this conversation is going nowhere as you are apparently unable or unwilling to address the issue I raised and seem intent on mischaracterising my position and attacking my logic. Goodbye.
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Hi Pot, nice to meet you. My name is Kettle.
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Some people enjoy being offended, Brett.
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My second rebuttal:
http://whoneedsnormalcy.blogspot.com/2018/04/neurodiversity-is-dead-ion-think-so.html
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I don’t have time to respond to all of Au Valencia’s points, nor do I have an interesting in engaging on some of the more bizarre ones, but here are my thoughts. 1. I agree, a more clear characterization would have been to say ‘the neurodiversity movement’. Long titles aren’t as compelling though. 2. I didn’t say being removed from a group is bullying. Re-read the paragraph. 3. I’d like to engage in conversations with these ND activists you reference as I hadn’t been exposed to that well rounded perspective. 4. I’ve tried to engage in constructive conversations, which, I’ll point out, don’t involve spurious accusations of hate speech. 5. I can recommend some primers on logic and argumentation. Hyperbole is not your friend. 6. I’ve made comments contrary to the ND movement in forums, yes. I haven’t encouraged death or harm, nor have I stalked. Who is doing that? 8. Regression is real, and since I’ve written the piece, other adult autistics who have experienced regression have reached out to me to have detailed and productive conversations. I’m not terribly fond of the levels, but they are an easily understood reference point. 9. Are you serious? 10. For real? 11. Guess that’s why Silberman got ASAN Ally of the year in 2015. 12. Not logical. 13. Reference hyperlinked in the piece. 14. I’d love to be part of these conversations, but I keep getting banned for simply discussing my experience. 15. I’ve never read that rationale for identify first language anywhere. 18. People with behaviors that would be characterized as autistic didn’t exist in Somalia, so no word was created to describe such behaviors. 19. Genetic racial health inferiority? Extrapolating that is like saying enhanced melanin production that affects Vitamin D levels = inferiority. Attaching a value judgment of inferiority to a biological fact isn’t coherent. 21. I have. 22. Huh? 24. Where did I say anyone wanted to increase pollution or poisoning? 25. I’d be delighted to have a conversation about this. 25. I said investigation into the prevention of the most incapacitating presentations of autism. Preventing a certain manifestation of a condition does not equal preventing people–because the condition is not inevitable or inseparable from the person. 29. Yes, our goals are the same, so why can’t we have a civil conversation? 30. Does your ad-hominem allegation against Torrey affect the stats?
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Thank you for responding, Twilah.
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I feel sad that this comment section has become so adversarial as I feel I could learn so much from the differing opinions of the people involved.
This comment from Au Valencia really struck me as something very important to mull over:
“Every neurodiversity activist I know of recognizes that neurodivergent people face challenges, discrimination, and disability. We don’t assert that being neurodivergent is inherently good, just that it’s *not* inherently bad as psychiatry claims.”
I see some similarities and differences related to this quote for those who experience extreme states or witness extreme states in their loved ones. The similarities I think have been hashed out here already, and have a lot of validity. The major difference I see, though, is that although some people talk about extreme states being ‘transformational’ while others see it more as devastating and painful; I haven’t heard anyone say that they wish they could have stayed in their extreme state forever, without being able to also participate in consensual reality. (Of course we know many people live happily ‘together’ with their voices or multiple selves, but I wouldn’t consider them to still be in a extreme state.) On the other hand, there are so many high profile autistic individuals who are accomplished, amazing people whose lens of the world seems to have things to offer that more ‘neuro-typical’ people cannot see. Autism does not seem to be a ‘state’ that people move in and out of like ‘extreme states’ (although I know some of the writers here talk about ‘regression’ so I am not talking about that or trying to argue anything about that one way or the other.)
For myself I truly do not think we have the answer as to ‘how’ or ‘if’ the the biological and the psychological interplay for so many situations (aside from more obvious factors like brain injuries, substance use etc.) Although I think it is so vitally important and crucial not to ‘overstate’ causations that are not proven (so much damage has happened from ‘experts’ doing that), it doesnt’ mean that they are not things that we don’t know of yet.
Anyway – I truly hope the experts in this field keep posting and commenting and teaching us about Autism. I have notices that there is often growing pains when new faces or groups join the discussion, and then after time everyone seems to understand people better.
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One misunderstanding of the “neurodiversity” movement (a side effect of having special education teachers wanting more euphemisms without understanding the message) is that we support autistic people existing because our existence creates “benefits” to society. Wrong! Autism rights activism is ideally anticapitalist and people shouldn’t have to prove their worth in a capitalist, ableist, racist, sexist, homophobic, and transphobic society. Our existence is inherently worthy.
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Thanks for this comment. This is very well said.
(I think I phrased my above comment poorly when I was trying to make the point that people in extreme states often want to leave their extreme state behind, which is a very different situation than Autism.)
I remember being surprised in the past when I found out that ‘Autism’ fell under the psychiatry realm rather then say the area or education and ‘learning differences”.
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Sorry for the slow response. Blame Ajit Pai as my Internet keeps going out every minute (I am not kidding).
I wasn’t criticizing you. I was responding to the author because a big misconception of the autism rights movements is that we support depathologization because autism creates “benefits”. That is not my thinking and it has never been. I have a right to live my life. I have a right to live my life by my rules, to have friends who accept me for who I actually am, to be affirmed in my female gender, to engage in the things I am passionate about, to stim, and to have my natural way of being NOT labeled as a medical condition that should be gotten rid of. I was pathologized when I was too young to understand anything. I don’t want to have the things I am interested in, my “rigidity” (standing up for my rights and not giving in to those in authority), my pleasant movements, or the social exclusion caused by other people not tolerating my existence labeled as a disorder and I also don’t like the idea that things are separate from me (see the godawful phrase “see the person, not the disorder”). So, to me, it is about the freedom to live my life and fighting back against the widespread social rejection of my existence (INB4 someone says, “why do care what other people think?” as if social rejection isn’t physically painful and can’t contribute to poor mental and physical health). I don’t feel like my existence needs to justified; in fact, that would contradict my beliefs.
You are right that most people who experience extreme states don’t want to. That is why I think the approach of many autism rights activists have of expanding their ideas to the entire DSM isn’t good. Different needs, different communities. Depression and anxiety aren’t part of who a person is, they are things that prevent a person from being themselves. By definition, the obsessions of OCD are intrusive and unwanted and the mood episodes are outside the range of a person’s normal behaviour. People with mental health issues won’t accept the neurodiversity paradigm applied to their condition, but that isn’t to say it hasn’t affected the community. The demon child of the medical model and the neurodiversity paradigm is mental health identity politics, which says to autistic people that our existence is a disorder should be gotten rid of, but it also says that mental health issues are “chemical imbalances” that can’t be gotten rid of. Basically, it says a person should be “mentally healthy”, but they can’t, which is harmful to both communities.
In fact, on Tumblr (terrible site, just upfront), I saw someone say their mental illness was preventing them from being autistic and I would agree with that. One of the great victories, in addition to removing the ASD dx, would be to allow autistic people to be diagnosed with social anxiety disorder. The DSM-5 views social anxiety as a part of autism, which is victim-blamey and has real-world consquences. It ignores the role of marginalization in our symptoms, just viewing it as part of our social differences, and redirects the philosophy of treatment from “accept yourself” (social anxiety disorder) to “change yourself” (“ASD”). If I got a social anxiety disorder diagnosis from a doctor who never diagnosed me with “ASD”, I would feel so validated as it tells my pain is real and that I am worthy of acceptance for who I am.
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But the symptoms for and diagnosis of Social Anxiety Disorder are very different to an ASD dx. Also SAD is treatable in ways that ASD is not. You can’t possibly conflate the two.
In addition the DSM-5 tests against “social communication”, not “social anxiety” (I looked it up) and that’s not the same thing.
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Yet still no one has provided a coherent definition for either autism or neurodiversity.
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I don’t think there is one or ever will be one. I do want a world where the word autism doesn’t exist and we can just accept people for who they are; however, I don’t think ignoring pathologization (and other forms of discrimination) against autistic people isn’t going to make it go away. So, the best definition is a social constructionist definition. People are certain ways through a variety of mechanisms, but society labels a diverse group of people as “having” “autism spectrum disorder” and marginalizes them for it.
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That’s closer to making some coherent sense. The question is, is “autism” a psychiatric label for a non-existent disease or a genuine neurological issue? This is key as to whether this is an anti-psychiatry issue. As for the drugging aspect, of which psych drugs are the biggest problem, allopathic medicine loads people up with all sorts of unnecessary drugs, so this is not a problem limited to psychiatry, although with psychiatry there is also the lack of an actual disease.
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I am not sure I am understanding what you are saying here. My understanding is that Autism is currently defined as a psychiatric condition diagnosed by psychiatrists. I have always wondered about this and wondered why, if Autism was going to be put together with other conditions, (by our current health and education systems that love categories), why it wasn’t instead simply lumped together with other ‘learning differences’ or ‘learning issues’ categories (e.g. dyslexia etc. ) which are not considered psychiatric conditions.
In terms of ‘rethinking psychiatry’, if Autistic people believe either that Autism shouldn’t be categorized as a psychiatric disorder, and/or believe that the current paradigm prevents healing or autonomy, this would seem clearly to be an issue for a website that ‘rethinks’ the current psychiatric paradigm, regardless of whether or not there are any underlying neurological ‘differences’ (or neurological ‘issues’ depending of how Autistic people look at it.)
In a broader sense, my understanding of ‘rethinking psychiatry’ does not mean that there can’t be any combination of social, psychological, neurological or biological reasons for different distress, simply that the current paradigm implies causation where no evidence exist, and then ‘treats’ people without informed consent.
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My understanding is that Autism is currently defined as a psychiatric condition diagnosed by psychiatrists.
That’s what I’m trying to clarify — is it? My first experience with the term was probably 40 years ago when it was associated with “retardation,” which was seen as congenital brain damage. Now it seems more & more like a behavioral label, and so it is not clear whether there is a consistent definition at all.
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Please review the post author’s closing words in comparison to quotes from Autistic proponents of neurodiversity.
The author’s words have asterisks in front of them to help distinguish them from the other quotes contained below.
*I propose that autistic people move beyond tyrannical groupthink.
(My commentary) Some of the terms used to describe tyranny, from which tyrannical is derived, include: “cruel, oppressive, harsh, unjust, arbitrary.”
(My commentary) With regard to groupthink, a formal definition is that of “a group that makes faulty decisions because group pressures lead to a deterioration of ‘mental efficiency, reality testing, and moral judgment.’ Groups affected by groupthink ignore alternatives and tend to take irrational actions that dehumanize other groups.”
(My commentary) Neither of these are “humanistic and supportive” ways to describe others.
*We should balance promotion of our talents and skills with honest acknowledgements of our environmentally induced challenges.
“There are real challenges associated with autism and other neurological differences. The social model draws a distinction between the underlying condition, which exists regardless of cultural attitudes, and the disability, which consists of everything that goes into society’s representation of the condition. In advocating recognition of the civil rights and dignity of Autistics and others with disabilities, we are not overlooking the existence of such challenges. Rather, we are seeking to create a world in which all people can benefit from whatever supports, services, therapies, educational tools, and assistive technologies may be necessary to empower them to participate fully in society, with respect and self-determination as the guiding principles.” (This and the rest of the quotes listed under that of the author throughout this passage are all taken directly from ASAN policy statement. NOT intended to be an endorsement of ASAN in any way; the points made are fairly universal among Autistic proponents of neurodiversity, including those who dislike ASAN.
Note: ASAN has had at least one Autistic individual who would be considered “severely disabled” per the author’s definition; this individual is nonspeaking and has full-time staff support as well as a number of health ailments including seizures. And is one of many people I personally know with a similar “presentation” who believe in the concept of neurodiversity and in their inherent worth as human beings with both strengths and challenges.)
*We should make room for more perspectives.
“When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities.”
*We should support more research into the environmental risk factors for autism so that the most incapacitating presentations can be prevented.
“More research is needed in areas such as communication, service delivery, education, and community supports that will have practical applications for improving the quality of life of Autistic people and our families. Autism research grants in recent years have gone mainly toward genetic and other causation-oriented studies with potential eugenic consequences, while studies focusing on educational practices, assistive technology, best practices in providing services and supports, and effective supports for community inclusion have received far less funding. These skewed priorities are unacceptable.”
*We should also support more research into modalities that can heal the most severely disabled among us, or any among us who choose healing.
“No neurological type is superior or inferior to any other. We do not discriminate against or exclude any Autistic person because of their diagnostic category, support needs, or disabilities. We oppose the practice of separating Autistics into high- and low-functioning groups, which incorrectly suggests that people function at the same level across all areas. Each of us has a unique set of skills and challenges; a person who requires assistance in one area does not necessarily lack ability in another. Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities. The Autistic Community includes all people on the spectrum regardless of their diagnostic category or their support needs.”
*We should move towards unity with the rest of the human race rather than division, by emphasizing our humanity over our autism.
“Like any other minority group, we have the right to respectful and equal treatment in all aspects of society. Although offensive depictions of autism and disability are not the only barrier that must be confronted in the struggle for inclusion, quality of life, and opportunity for all people with disabilities, the issue is a significant one because cultural perceptions shape the reality of our lives. By challenging harmful and inaccurate representations of autism and disability, we can advance a broader and more effective agenda for our community as we seek to bring about a world in which all people with disabilities are fully included and accepted in school, at work, and in society at large.”
That’s the end of that paragraph. Before we go to the final paragraph, let’s revisit what the author wrote in the paragraph immediately preceding this one:
*But we have to recognize that not all environmentally modified brains turn out well. Some of us can’t perform the fundamental activities of daily living independently. Some of us have are caught in a loop of sickness and self-harm and engage in biting or other types of violence against other people.
Let’s contrast that with the policy statement, which declares:
“The United States Supreme Court has declared that every American with a disability has the right to live in the most integrated setting. This requires that sufficient funds must be made available for services and supports to enable community participation.
Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access).”
Here is the author’s final paragraph:
*We are beautiful, we are complex, we are worthy of love, and we are entitled to integration into our communities and workplaces. We must move forward with a commitment to truth and a dedication to not only our own well-being, but also to the well-being of those with whom we interact. In embracing truth, we embrace a commitment to growth, maturity, and harmony.
And the policy statement reads:
“Every person is worthy of inclusion and respect, whatever their support needs may be. We view the Autistic community as one community, encourage self-advocacy among all people on the spectrum, and also work with parents and other allies who share our goals in the interest of ensuring for everyone the rights of communication and self-determination.
We advocate for greater support and understanding for adults and children on the autism spectrum. Within the broader context of the disability rights movement, we seek to bring about more accommodation and acceptance of neurological diversity in our society. We believe that self-advocacy is essential to this process and that there must be meaningful involvement of Autistic individuals in making policy at all levels: Nothing About Us Without Us.”
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Typo. Should state: “Note: ASAN leadership has had at least one Autistic individual who would be considered “severely disabled” per the author’s definition; this individual is nonspeaking and has full-time staff support as well as a number of health ailments including seizures.”
The word “leadership” was missing above. My apologies.
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The key difference between my position and the ASAN policy statements you’ve quoted is that I don’t want assistive technology or supports. I don’t want physical therapy, occupational therapy, speech therapy, or supportive typing. I want to rectify/reverse the foundational causes of my intermittent inability to speak as well as the many of my other challenges I experience that fall under the umbrella of autism. This means I want to fundamentally change my neurological experience. I’ve had some degree of success changing my neurological experience, and with time, I think even greater transformation is possible. Simply making those statements in online forums for autistics has led to me being attacked and banned. That’s the tyranny I’m talking about–that there are other autistic individuals who have decided they can police my lived experience and tell me that because I share the same diagnostic label as them that I’m not permitted to proclaim that I’m trying to heal. Yes, I call it tyranny when another person declares themselves sheriff of my body and brain.
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I am curious what worked in terms of helping you with your intermittent inability to speak.
I had already been wondering about the following statements you made in your post and wondered if you were able or willing to explain these statements further in terms what you felt helped or harmed you:
“It’s like a switch got flipped.” Those are the words my primary care provider uses to describe my experience of regression from Asperger’s syndrome to “low-functioning” or level three autism at age 38. In 2014, she’d watched in horror and perplexity as a long series of adverse reactions to pharmaceuticals and other medical treatments stole my ability to speak, read, and write, caused my sensitivity to sound to skyrocket, and decimated the few social skills I’d spent the previous decades mastering. ”
When I read this passage originally I was thinking that you were describing what happened to you as a result of being given too many drugs, but now I am wondering if I am missing part of what you are saying. (No worries if you would rather not go into more details of your personal story:) )
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It’s an incredibly long story with a complex intersection of mechanisms involved. You can find part of what happened here: https://www.madinamerica.com/2017/04/when-modern-medicine-made-me-more-autistic/. Months after I wrote the post I just linked to, I also found out that immune system dysfunction played a role as well. I write about that on my blog: https://www.athinkingpatient.com/mast-cell-activation-and-autism/ Those things are still just the tip of the iceberg though, and I’m working on a memoir of the entire complex series of medical events that facilitated my regression. I’ve reached the limit of links MIA permits for comments, but on my blog I write about what I’ve been doing to heal my gut, immune system, and brain.
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Thanks Twilah!
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I apologize for just now seeing your response as I have been ill.
I agree with you that no one has the right to police your body and brain, and I’m sorry you have had that experience. (That’s a genuine “I’m sorry” and not intended to be a patronizing nor sarcastice one.) However, I still fail to see how you felt it was acceptable to attribute the censorship and attacks you have endured from selected autistics in online forums to a sizeable, heterogeneous community.
There are Autistic forums and groups that I avoid because I find some of the content/members/perspectives not to be to my liking. But I can’t fairly generalize the entire group, or the majority of a group, because of those unpleasant experiences. Neither can nor should you. Those groups are not representative of everyone and they shouldn’t be treated as such.
I am an Autistic parent of Autistic and non-Autistic children. I’m a POC. I’m a first-generation American. There are a number of factors about me personally that differ from an individual who might be more readily perceived as the “face” of Autistic advocacy. So I do relate to possessing views that others in a particular group might not share.
Not being aware of the guidelines and philosophy of some of the groups you’ve been banned from, I cannot really provide much helpful context to how you were personally treated. Perhaps it was indeed an excessive and unethical way to deal with an individual who had views that dissented from the majority. I don’t have enough information to make that determination.
But I do know that there ARE people who I have personally seen isolated not for something as minimal as a different opinion, but for legitimate reasons such as harassment, stalking, threats, slander, and abusive behavior. I don’t consider it tyrannical for a group of marginalized individuals to take steps to protect themselves. (I’m not insinuating at all that your behavior fell into one of these unacceptable categories of behavior; just sharing the standard reasons why an individual would typically be banned.)
This was coming together more coherently in my head than it seems to be in this comment. Perhaps my current state of sleep deprivation is a factor…I’ll end now before my thought devolve further. Thanks for replying.
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Agree with almost everything you have said. I have posted similar thoughts myself before on my blog:
“The “It’s Just a Difference” Delusion”
https://planetautismblog.wordpress.com/2016/08/09/the-its-just-a-difference-delusion/
One thing I do disagree with though is that Asperger’s and autism are not related conditions. I understand they are not exactly the same, but they are slightly different manifestations of the same condition. It would be like saying skin cancer and throat cancer are not the same, they are different manifestations of cancer, different types etc.
There are many parents with Asperger’s who have children with autism. It has been a discussion I’ve had with others, where we note that parents with Asperger’s will often have children more severely autistic than they are, with co-morbid mental health that the parent doesn’t have. I believe that as generations are exposed more and more to environmental toxins, especially vaccines, it makes the condition more severe. That would account for the physiological brain differences too. Everyone has a unique physiology and how they react to environmental toxins. Different genes can be expressed in immediate family members and scientists speak of the extreme heterogeneity of ASD and how there can be more than one epigenetic route (e.g. via different genes) to the same condition. I have Asperger’s and my children are autistic, one has classic autism (albeit so-called “high functioning”) and their difficulties are significantly worse than mine.
The amount of autistics I have upset by publicising research showing vaccines can cause autism, the ridiculous response is “well that’s vaccine damage and not autism”. I have to break it to them that as ASD is clinically diagnosed as a syndrome of behaviours, anything that meets the diagnostic criteria is ASD however it was caused.
They then start attacking me that I am “ableist” and all sorts of other ridiculous labels. Bit difficult to be ableist when I am autistic myself. There are the camp that are so angry that anyone could consider ASD a disability and furious that some parents are seeking remedies to help their autistic children, that they outright lie and cause a lot of trouble for these families, by infiltrating their support groups and reporting them to the authorities accusing them of child abuse. It’s disgusting.
It’s well established that ASD is epigenetic, I don’t know why they keep insisting it’s genetic, as highly heritable is not the same as saying it’s a genetic condition.
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I have a lot in common with autistic people. I think my father would now attract an Asperger’s label. Irony being I once attracted a bipolar label and both have Nazi roots. Ironic to me anyway.
A few years back I attended an academia meet-up in northern england, that was supposedly the beginning of a new alliance between the mad movement and the autistic movement. I fielded one question and it was dismissed by the great Peter Beresford. It probably didn’t help that I’d previously expressed my love for him on social media. I wasn’t sure if the snubbing was designed to break my heart. It didn’t. I didn’t really love him. I was in the midst of a rather cranky mania and pseudo-benzo withdrawal.
Mania isn’t tolerated by anyone by the by. No exceptions are made for it. None at all.
I left feeling confused. Impressed by the intellects on show but nonetheless confused.
I remain confused.
But all in all I think neurodiversity is a great idea and an impressive movement. I’ve been rekindling my interest in computer programming and wotnot and there is indeed a preponderance of autistic people in that culture. Code is a kind of poetic expression and everyone has their own style. Bash scripts. O the beauty of bash scripts.
I realise I haven’t contributed much, I just wanted to make a show of solidarity with our autistic brothers and sisters. We have a lot in common. We’d do well to stand together.
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I really appreciate Twilah’s perspective. While I understand that it is not EVERYONE”S perspective, and some people feel very differently, isn’t that very thing what we are trying to respect about each other? I see a lot of people here trying to be “right” instead of seeking to understand people who see things differently. That seems very problematic in a discussion about neurodiversity or any kind of diversity. Perhaps we should all spend less time determining whether we agree or disagree and more time just listening and learning.
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I agree with you Planet Autism–that Asperger’s and autism are related. I meant that they’re substantially different, but I think they are still related. I’m sorry if I wasn’t more clear in my blog. I don’t think I would have regressed if I hadn’t already had Asperger’s, which as you know is generally considered to be part of the so-called spectrum. Since I’ve written this I’ve been in contact with two other people who have regressed as adults. I definitely think there’s a sort of association that makes this possible. I’ve also observed the same thing you have–Asperger’s parents with children who are more severely autistic. Though there are neurotypical parents with severely autistic kids too.
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Twilah Hiari thank you so much for writing what you think
I am in total agreement/same way feeling this energy that keeps people prisoners and stops the real-world changes that people would probably do immediately if they realized that life is meant to be life, and physical reality should be taken seriously. Instead, people are often just engaging in a fearful, seperated, and intellectual struggle at the expense of their bodies, the world, themselves, living a miserable existance in a temple that they spend so much extraneous energy to beuild and keep up, in order to either explain something troubling or to overcome something which is just asking for love.
Again, I really want to say I appreciate your perspective and I feel VERY lonely in it too. Someday we shall be able to not feel as lonely. It takes a lot of strength to uphold the torch of this stuff… and I am just like —- thank you, people who are brave. I just try to make my life happy and build my strength and clarity so I can bring my free self out there to talk about something that makes me feel like a caged prop.
Thanks.
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I am deeply troubled by the ease with which some neurodiversity advocators think they can silence the voices of those they don’t like. Unfortunately, the media is easily biased in this issue.
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Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna by Herwig Czech:
https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0208-6
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It used to be said that Cocaine was god’s way of telling you you`ve made too much money.
In the same way you could claim the supporting the more extreme elements of Neurodiversity is just god’s way of telling you you`ve spent too much time in isolation on the Internet, on a device usually paid for by someone else, i.e. wealthy loving parents, welfare (taxpayer).
It’s the ultimate in self-indulgent rubbish, the inconvenient truth is the majority of autistic individuals are disabled with a lower life expectancy (sometimes as low as 36), 90% unemployment rate, with a life of poverty and loneliness. Nobody is saying they shouldn’t have rights in the same way as other disabled individuals like schizophrenia, but all this rubbish of autism is a difference is just un scientific nonsense, being dead is a difference, so is being in a coma & in a vegetative state!
In the real-world citizens work all week to put a roof over their heads. Government quite rightly supports measures to help those that cannot help themselves, such as the disabled, but as a healthy trade off also supports measures to reduce the future burden of these individuals through research and treatment programs.
Those that refuse future treatment if it becomes available would quite rightly receive no sympathy in the form of acceptance, welfare support.
The idea that cash strapped western governments and hardworking taxpayers are going to be happy to pay enormous sums of money to the 90% of autistic people who are unemployed / unemployable because they refuse treatment, is not going to happen. The idea that schools will accept children that may go crazy in the classroom bite teachers etc., because their parents refuse them treatment is not going to happen, if a cure or effective treatment becomes available. In fact refusing your child treatment will quite rightly be seen as a form of child abuse, given the pain and suffered by some of the lower functioning types.
I used the term Western governments for a reason, in Africa, Asia and nearly all the rest of the world, it wouldn’t even be debated, some of the ideas of neurodiversity would just be laughed out the door.
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I totally agree ross23. I wrote this piece also outlining one potential future if we keep “respecting neurodiversity.” https://www.athinkingpatient.com/our-dystopian-future-or-why-we-need-to-end-the-autism-epidemic/
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Wow, this blog post discusses a thought-provoking topic about the future of neurodiversity. The author presents multiple perspectives, making it an insightful read. Thanks for raising awareness and promoting meaningful conversations!
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Hi my name is Angela. I am not on the spectrum. My disability is dyscalculia and dysgraphia. Also DCD and those things were diagnosed. When I was child. An IEP was in place until I graduated from high school in 1991. I did receive PT therapy after school. I thought the neurodivergent movement. Didn’t include my learning disabilities it does. Whatever the nature of our disabilities. Should include people that would like research into cures. Those that don’t want the cure that’s fine too.
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