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ASPartOfMe
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14 Aug 2021, 7:23 am

Why there's a war between parents of children with autism and autistic adults

Quote:
When Eileen Lamb’s toddler son, Charlie, was diagnosed with autism spectrum disorder, she didn’t have a big support network nearby. So, like many other isolated and overwhelmed moms, she turned to social media.

“I was just looking for people that I could relate with,” Lamb, 31, of Austin, Texas, told TODAY Parents. She said her decision to share her family’s autism journey on Facebook and Instagram turned out to be “a double-edged sword.”

“Every time I posted something about Charlie, hundreds of people with autism would attack me and say, ‘You clearly hate your child, we need to call child protective services on you, you’re a piece of s---, you’re not autistic so you cannot speak about your son’ — it was very, very, very intense. It was horrible.”

Lamb thought the vitriol might subside when she opened up on social media about her own autism diagnosis, which she received a year or so after Charlie’s.

“It actually got worse,” Lamb recalled. “People told me that I had self-internalized ableism, that I was self-hating. ... I felt like I was being bullied into silence.”

For parents whose children have been diagnosed with autism, ADHD and other neurological conditions, decisions about what to share online can be even more fraught. A post that one parent views as “raising awareness” or “seeking acceptance” could be fodder for future embarrassment and regret when the child being posted about becomes an adult.

Autistic teenagers and adults are on a crusade to help neurodiverse people get a fair shot in workplaces, academic institutions and other settings. In recent years, autistic self-advocates have popularized the hashtag #ActuallyAutistic and are pushing to rename “Autism Awareness Month” in April to “Autism Acceptance Month.” Many call out characterizations of autism on social media that they find offensive or misleading.

“There’s this tragedy narrative out there implying that autism is a fate worse than death — when it simply is not,” said Amanda Seigler, 39, an autistic mom of autistic children who serves as an administrator of a Facebook group called Autism Inclusivity, which has more than 70,000 members.

“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy,” Seigler continued. “They say, ‘Oh, poor me, my child had a meltdown today.’”

Some parents of autistic children share posts that are excessively personal, including video footage of their kids having meltdowns, holding up signs describing the medications they’re taking and wearing diapers or sitting on toilets well after the age of 10.

Autistic adults tend to hate posts like these. They say that in addition to violating children’s privacy, the posts do not reflect the experiences of most autistic people.

“These parents are adults, so they should know better,” Seigler said. “Once a post is online, it’s there forever.”

“I feel very strongly that the complaints by mildly affected autistic adults that parents are violating their kids’ privacy by writing about them represent the most insidious form of censorship,” said Amy Lutz, a Pennsylvania author, mom of a 22-year-old severely autistic son and vice president of the National Council on Severe Autism. “Severely autistic individuals don’t have the capacity to consent, therefore parents are forbidden to speak about them, therefore the only voice the public is supposed to hear is that of autistic adults who claim to speak for the entire spectrum.”

John Elder Robison is an autism expert who feels empathy for all the autism factions who spar on the internet. A best-selling author of memoirs about his own autism diagnosis at age 40 and a leader of neurodiversity initiatives for universities and U.S. government committees, Robison is also the son of an autistic father and the father of a 31-year-old autistic son.

In a recent Psychology Today essay with the headline “Your Autistic Child Is Perfect and May Need Help,” Robison addressed the autism wars being waged online.

“In the autism community, we often say, ‘Nothing about us without us,’ meaning any conversation about autistic people should be led by autistic people,” Robison wrote. “It makes sense, but it’s not the whole story in this case. There is another equally valid perspective. ‘Nothing about us without us’ applies equally well to parenting. ... If the topic is parenting an autistic child, what better voices than autistic parents?”

Robison, 64, of Western Massachusetts, told TODAY that he understands why many parents feel blindsided and afraid when their children are diagnosed with autism — an experience shared by 1 in 54 children in the United States.

“Many parents see it as a terrible, terrifying disability,” Robison said. “They wonder: ‘Will my child be able to live on their own when I’m gone? Will they find a partner?’ It’s scary! These parents feel a lot of stress and a lot of fear. ...

But when they write things online like ‘I wish I could cure my kid,’ autistic people who are very verbal online can take great offense. They’ll say, ‘Oh, you say you don’t want people like me to be born? You don’t want your son to be born?’ And no, those parents are not saying that at all. They’re saying they think their son has a horrible disability and they wish he didn’t.”

Robison said the passage of time often helps many parents realize they didn’t need to be so fearful.

“Most autistic people become less disabled as they get older — and sometimes we get strikingly less disabled,” said Robison

“I believe children are only as healthy as their caregivers — and to help other caregivers, it does involve peeling back the curtain a little bit and allowing people into our lives,” said Jessica Ronne, 44, a Michigan mom who blogs at Jess + The Mess and whose teenage son Lucas has multiple diagnoses that will require total care for the rest of his life; severe autism is just one of them.

“Most of us are not sharing our experiences to diminish our child’s privacy or to embarrass our children — we’re doing it because we’re desperate for change,” Ronne said, noting that many overloaded parents need help. “People can’t fix what they don’t know about.”

Kate Swenson, 38, a Minnesota mom who has chronicled her life with her severely disabled autistic son, Cooper, attained a blinding level of attention online after a video of her crying in her car went viral on TODAY’s social media platforms in 2018.

“I got death threats. I had a woman tell me she was going to kidnap Cooper. People told me I don’t love him because I said autism is hard,” Swenson recalled

It feels like severe autism is the forgotten end of the spectrum. It’s so hidden away for safety reasons,” Swenson said. “Kids like Cooper were institutionalized not that long ago — just 30 to 40 years ago. That was the choice parents felt they had to make. If I don’t share his story, how will kids like Cooper ever get the support they need?”

Lamb, the mom of Charlie in Austin, Texas, said she’s determined to keep sharing posts about her son online. She expects to deal with hostility as a result.

An array of autism experts, autistic adults, disability advocates and parents offered the following tips for moms and dads before they share information about their own children online:

1. Find your tribe
2. Think small and stay local
Kerry Magro, 33, of Hoboken, New Jersey, was diagnosed with autism as a young child and didn’t start speaking in complete sentences until he was 7. Today, he’s a public speaker, disability advocate and author of three books, and he has a doctorate in education. His dissertation focused on parents’ efforts to find resources in online communities.

“For a lot of parents, it’s best to stay away from large groups in the disability community because of all the conflicting opinions,” Magro said. “Small, localized Facebook groups are best for therapy referrals and other advice in your local area. ... It’s a good way to move away from all that toxicity online.
3. Mind your terminology
4. Speak for yourself, not your child
5. Ponder the short- and long-term consequences


I would change tip 3 to “Don’t language police”
I would add
7. Become a wrong planet member
I guess I have been living in a Wrong Planet bubble because while we have more then our share of dramas the level of invective described is pretty rare here these days. While I ran into a lot of what was described awhile back outside of WP years ago I have not seen much of it lately.

I would not say I was completely clueless I am not surprised that there are Autism Justice Warriors and woke autistic bullies out there. Despite all the “living in our own world” descriptions of us we live in the toxic environment of 2021. I am surprised at the level of invective over the same issues as when I joined WP eight years ago.

I know I am quaint with this opinion but I feel very strongly about parents filming meltdowns and describing attempts at toilet training older children. As mentioned once it is on the net, it is there forever and Autistics do mature often at rates not expected. It is hypocritical to argue you are doing so and so for your child without consent because the child does not have the ability to consent then film your child's most personal and trying moments without consent.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


HeroOfHyrule
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14 Aug 2021, 1:48 pm

I don't think parents should be harassed for talking about their children's autism and their experiences with it, but there is no reason for people to post pictures/videos of their children in embarrassing and private situations, such as sitting on the toilet, having a self-injurious meltdown, etc. I feel the same way about neurotypical children. It's odd to me when people post pictures of their NT toddlers or older children on the toilet or in the bath, so it's not like I'm singling out severely autistic people and their parents. You can illustrate your child's issues just fine with words and without having to invade their privacy. It's not "censorship" to tell people that behaviour is unnecessary.

As for people getting upset when parents say they want a "cure", I understand the feeling behind that, but I also understand the reaction. Autism is a lot more integral to someone's personality and what makes them "who they are" than NT parents realize, so even if they aren't thinking about that and aren't intending it, they may come off as if they are fine with entirely changing their child to get rid of specific issues the child has. That's going to be appalling to some people with ASD who read that.

It's also odd to me that it's always assumed that people online who take offense to these things are only "mildly" affected. It's not impossible for more affected adults with ASD to type and use the internet, and I think the assumption that anyone who can type, and can have the mind to experience and express disapproval, is heavily ableist.



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05 Sep 2021, 6:39 pm

These death threats and harassment by "hundreds of autistics" do not sound very autistic..

Quote:
“I was just looking for people that I could relate with,” Lamb, 31, of Austin, Texas, told TODAY Parents. She said her decision to share her family’s autism journey on Facebook and Instagram turned out to be “a double-edged sword.”

“Every time I posted something about Charlie, hundreds of people with autism would attack me and say, ‘You clearly hate your child, we need to call child protective services on you, you’re a piece of s---, you’re not autistic so you cannot speak about your son’ — it was very, very, very intense. It was horrible.”


I smell socks.

The article itself seems pretty meandering and weak too..



carlos55
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06 Sep 2021, 6:15 am

There is another article about this. It states many in Neurodiversity are trying to present a cleansed version of autism to the outside world.

While this is understandable for high functioning aspies that want better career chances. Afterall if you want to be hired you need to show potential employers that you may have superpowers & certainly not "r*****ed", however acting like this while claiming to represent all autistic people is a form of ableism.

This is obvious when looking at how they reacted to the Sia movie, simply because it featured a girl further down the spectrum, (unless you believe people get angry about actor hiring involving complete strangers). Also, whenever severe autism is shown they either claim it’s not autism or try to suppress it in some way.

Such things will never work, since severe autism is not going away (if only) & they have to stop this ableism if ND is to have any future representing autistic people. Anyway, good article: -

https://quillette.com/2021/09/03/creepi ... orthodoxy/

Quote:


The Creeping Orthodoxy of the Neurodiversity Movement

It is no longer fashionable to talk about autism spectrum disorders among certain quarters of the ASD community without reference to “neurodiversity.” As an individual on the autism spectrum myself, I was once firmly planted in the neurodiversity camp. However, over time, my enthusiasm for the movement has waned, even though I still support what they are trying to accomplish in general terms.

At a glance, the neurodiversity movement operates as an extension of the organizing principle that animated previous struggles for civil rights and acceptance. Like members of other minorities and marginalized groups, individuals with mental health issues and the developmentally disabled were subject to discrimination and persecution. There was a time when institutionalizing a difficult child was considered humane, and cold mothers were cruelly blamed for ASDs.

Disability advocates helped lobby for and implement the historic Americans with Disabilities Act (ADA), signed into law by George H.W. Bush in 1990. A few years later, Australian disability rights advocate and sociologist Judy Singer coined the term “neurodiversity,” which she understood to be an addition to the existing political categories of race, class, and gender. Writing for the Atlantic in 1998, Harvey Blume amplified this sentiment when he wrote:

Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.
The neurodiversity movement is a much-needed historical correction and has brought undeniable progress. It aims to remove social and environmental obstacles which would prevent the flourishing of autistic individuals while opposing medical and behavioral interventions seen as making an autistic person “indistinguishable from his peers.” All this appealed to my progressive belief in the pursuit of social justice, and in the importance of not depriving any human being of their basic humanity and dignity. Neurodiversity offered me the opportunity to belong to a social group that had been elusive in grade school and high school. Belonging to a group of like-minded individuals is a powerful motivator when one’s own personal voice has felt marginalized for most of their life.

With the dot.com boom and the rapid proliferation of internet use, this idea grew into what was mostly an unorganized movement at first. But within a few years, several autism advocacy groups sprang into existence with the goal of integrating autistic people into mainstream society. In 2015, Steve Silberman published his influential book, Neurotribes, which electrified the movement. It gave some autistic people a sense of self-confidence they'd never had before, and the movement became much better organized. In the decades since Judy Singer wrote her Master’s thesis on neurodiversity, much of what she presumably hoped to see has come to pass. For example, one of the movement’s strongest advocates, John Marble, was appointed by President Obama to the Office of Personnel Management (though he “came out” as autistic later). Similarly, autistic self-advocate, activist, and scholar Ari Ne’eman served on President Obama’s National Council on disability. Autistic people are visible today. There are autistic journalists, actors, consultants, politicians, lawyers, activists, billionaires (or at least one billionaire), researchers, and even a self-proclaimed psychic. While there has no doubt always been autistic individuals in these professions, they now are well-known, and their accomplishments ought to be celebrated.

The disgraceful history of Western eugenics has made a number of neurodiversity advocates hostile to genetic research. They worry that screening for genetic markers in the womb will lead to the widespread abortion of neurodiverse babies. They also tend to be suspicious of research into the etiology of ASDs, research that employs any kind of ableist or pathologizing terminology, and pretty much any ASD research conducted by non-autistics. A common slogan used by the movement is, “Nothing about us without us.” Neurodiversity advocates will tell you that they are sick of having their lives researched, analyzed, and described by non-autistic people using derogatory terminology as if they are zoo animals. They want to be the authors of their own lives. These are, at the very least, understandable anxieties and goals.

However, the movement has gone too far in its rhetoric and behavior. In 2019, autistic self-advocate Tom Clements wrote an article for the Guardian in which he criticized the movement based on his personal experiences as an autistic person, and was roundly attacked by neurodiversity advocates. Another self-advocate, Jonathan Mitchell, wrote a similar article for the Spectator and also found himself under attack. It seems that “Nothing about us without us” only applies to those whose opinions align with the in-group.

This militancy has reached a point where it is making national headlines. The Today Show documented instances in which the parents of autistic children were bullied by neurodiversity advocates online for expressing their views. Neurodiversity advocates claim this story is overblown and features an example of someone who supports Autism Speaks (an organization hated by the neurodiversity movement). Still, the problem persists. Spectrum News reported a story in 2019 about a puppet show that had to be canceled following the circulation of a petition that gathered 12,000 signatures, even though the author of the show was the carer of an autistic child who wrote the script seeking input from people on the spectrum.

The neurodiversity movement's central claim is that autism is a difference, not a disorder. Autistic people struggle because society is not sufficiently accommodating, not because there is anything inherently wrong with autistic people. This is illustrated by what Damian Milton calls the “double empathy” problem, which challenges the prevailing notion that autistic people lack empathy. Milton argues that this is a two-way street—neurotypicals lack just as much empathy towards autistic people as autistic people lack towards neurotypicals. This is simply because the two groups communicate in entirely different ways.

Yet even if we were to accept this statement at face value, what practical implications and applications can be drawn from it? Neurotypicals outnumber autistic people by a ratio of around 54:1, so expecting billions of people to educate themselves on autistic modes of communication is unrealistic. While neurodiversity advocates insist that they can be the educators on this, not everyone in society will listen. Furthermore, since every autistic person is different, no single advocate can realistically hope to represent the group as the whole. Some autistic people (like Temple Grandin) are visual learners, others are auditory learners, while still others are kinesthetic learners. Some individuals on the spectrum are introverts, others are extroverts. Some individuals have extreme sensory sensitivities, while others have more social difficulties than anything else. Advocating on behalf of autistic individuals as if they constitute a monolithic group is a fool’s errand. As the old saying goes, “If you’ve met one person on the spectrum, you’ve met one person on the spectrum.”

Even if autistic people feel more comfortable with each other and understand one another more, that is hardly a reason to level the playing field with regards to empathy. And even if autistic researchers conduct research into ASDs, they are operating under some level of personal bias, just as all people are. While it is true that autistic people tend to show just as much empathetic concern as anyone else, this does not mean all autistic people experience empathy in the same way.

This false leveling of the playing field has real-world implications. The slogan “Let all autistic people speak for themselves” assumes two things. First, that all autistic people would say the same thing, and second, that all autistic people want the same things. These assumptions create an in-group/out-group mentality within an already marginalized community, put political pressure on advocates to stay in lock-step with the orthodoxy, and are frankly out of touch with autistic people who may never have even heard of neurodiversity.

Neurodiversity in its current form is simply unsustainable. Already there are movements such as Mad Pride which celebrate mental illness as a reaction to the historically deplorable asylums and institutionalization conditions of the past. This idea makes a sort of poetic sense in a book like One Flew Over the Cuckoo’s Nest, but from a practical standpoint, it is not of much use. Try telling someone experiencing a psychotic episode that they should be “proud” of what they are going through. (Yes, some Shamanistic cultures see schizophrenia as a sign of spirituality, but most people would still say it is profoundly disabling.) Try telling someone with crippling anxiety or depression that their condition has its redeeming qualities.

Neurodiversity advocacy seems to assume that one must have redeeming qualities in order to be valuable. While it is true that advocates try to educate on behalf of all people regardless of their level of “functionality,” and are staunch supporters of the non-speaking, they usually put the most articulate, best-educated, and most socialized individuals forward as leaders. The problem is that even though autism can inhibit communication and comfort in social settings, advocates need to be good communicators. So, only a small proportion of the autistic population are being represented by neurodiversity. Only those with the most “value” in the eyes of the in-group set the tempo for the movement.

For example, consider the following paragraph:

One should regard autistic neurology as worth valuing because each neurological structure contributes to the collective variety of human neurological diversity, in much the same way that each human culture contributes to cultural diversity and each of the hundreds of human languages makes a valuable contribution to human linguistic diversity.
This argument implies that neurodiversity is valuable for the benefits it confers on everyone. Advocates would add that it is only the bigotry and ignorance of the neurotypical majority that impedes this value. Yet some today believe that neurodiversity advocates themselves are marginalizing those on whose behalf they claim to speak. Acceptance and understanding have to begin at home if they are to be embraced by the rest of the world. We can’t expect others to be accepting of autistic people when even neurodiverse individuals won’t do likewise. Acceptance has to include unpopular autistic people, and those who can’t contribute much to society.

Furthermore, an alarming dogma has arisen. Neurodiversity advocates don’t like to be told their own personal story is “inspiring.” They call this “inspiration pornography”—unintentional ableism that actually tells disabled people they are a burden and reinforces stereotypes. So if you offer a neurodiversity advocate a compliment of that kind, they are likely to take offense, even if it is well-intended. The suspicion is that you are simply trying to make yourself feel better about who you are as a person. (I try to accept any compliment I am given. Call me naive.)

But if an autistic person can accomplish something small, like going to the grocery store for the first time, it is inspirational because their accomplishment took a mountain of effort and courage! If a parent is able to help their autistic child stop themselves from spreading feces on the wall, that is inspirational. If an autistic person can go to an MLB game for the first time and find enjoyment without being overwhelmed by the noise, that is inspirational. If an autistic person conquers their fear of learning to drive and passes their test, that is inspirational. A failure or refusal to acknowledge these accomplishments implies that they don’t matter.

Neurodiversity is on the right track, and I support the agenda as it builds upon the civil rights movement. But advocates have overcorrected and are at risk of alienating people. Autism is a disability, not a mere difference, and autistic people deserve the support, understanding, and accommodations they need to be successful in life. These two statements are not mutually exclusive. Neurodiversity advocates would do well to acknowledge and accept this.


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"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


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25 Jan 2023, 12:04 pm

The power struggle between researchers, autistic self-advocates and parents is threatening progress across the field.

Quote:
In April of 2021, Emilie Wigdor finished up a paper titled “The female protective effect against autism spectrum disorder” and put it on the pre-print server medRxiv. Wigdor is a Ph.D. student in human genetics at the University of Cambridge and the Wellcome Sanger Institute in the United Kingdom, and the paper had taken three years to complete. It was also the first paper on which she was first author. She was proud of that, and she took to Twitter to promote the work in an 11-part thread.

Wigdor isn’t particularly active on the platform; she mostly retweets, and she has just hundreds of followers, many of whom are geneticists and researchers like her. A handful of them offered admiring comments in replies to her post. But when the paper was published in the peer-reviewed Cell Genomicsin June 2022 and she put out a similar 11-tweet thread on 8 June, the response was quite different.

This time, one of the first replies was from an autistic researcher in Australia, who tagged Ann Memmott and pointed to Wigdor’s thread as “a good one for you to dissect.” Memmott, who is autistic, is an associate at the National Development Team for Inclusion in the U.K. and sits on the editorial board of the forthcoming academic journal Neurodiversity. Her Twitter handle identifies her as a “challenger of poor practice in autism research,” and she did indeed dissect Wigdor’s thread, noting for her followers (now more than 28,000), on 12 June, Wigdor’s use of the words “female protective effect” and “risk” and “autism spectrum disorder,” and the description of autistic study participants as male and female “cases.” Memmott, who declined multiple interview requests for this article, also blogged a criticism of the paper.

That helped boost the signal, as did replies and retweets from several other neurodiversity advocates. Then the negative comments came flooding in. The paper was labeled ableist, eugenic, transphobic and intersexist. One person tweeted that Hitler and his army of eugenicist “scientists” would be proud of Wigdor. One called it “s**t science.” A few simply gave her some version of “f**k you.”

Monique Botha, who is autistic and uses they/them pronouns, was watching all this. Botha, a research fellow at the University of Surrey in the U.K., has been on the receiving end of some nasty interactions, both in person and on Twitter, and knows how unpleasant it can be. For this reason, Botha did not want to add to the Twitter storm settling over Wigdor. They instead crafted a measured response, mentioning their dislike of Wigdor’s use of the word “cases” but otherwise showing a restraint that can be difficult to maintain, Botha admits, given how exasperating the current state of autism research can be.

The Twitter account @autismsupsoc, however, took a different approach. The account, which “endeavors to raise Autistic Voices & empower Autistic Rights,” has more than 14,000 followers, and it went after the scientists in Wigdor’s timeline. It tagged more than 100 of them in a long thread on 12 June, informing them they were guilty of retweeting Wigdor’s “ableist and bigoted comments” and giving them six days to fix their error. The account said it would update the thread on 18 June (Autistic Pride Day) to “document what action YOU personally took so that history will always remember what YOU did when called upon to correct your mistakes.”

The scientists did nothing, and Wigdor, who also declined to be interviewed for this article, never responded to any of this. By the end of 14 June, the mob had mostly moved on.

Conflict between non-autistic researchers and autistic people is not new. It can be seen as far back as the 2008 International Society for Autism Research (INSAR) Annual Meeting in London (the meeting was referred to as IMFAR at the time). That year, the French researcher Thomas Bourgeron gave a keynote speech titled “Synaptic and clock genes in autism spectrum disorders.” In the audience was Laurence Arnold, a British autistic self-advocate who was director and a trustee of the National Autistic Society in the U.K., and a relatively new Ph.D. candidate at the University of Birmingham at the time.

Also sitting in on the keynote was autism researcher Matthew Belmonte. As Geraldine Dawson of Duke University gave opening remarks about Bourgeron’s work, Arnold began to mutter his displeasure. Pretty soon, other attendees could hear it, and Belmonte could hear it, too.

Finally, Arnold raised his voice and clearly asked Dawson why so much of the research at the conference discussed “autistic subjects and healthy controls,” as if autistic people were diseased. That was enough for Belmonte. He has a brother with autism who is nonspeaking, and Belmonte hoped that genetic research might lead to more insight, and breakthroughs that would benefit people like his brother. Almost before he knew it, Belmonte had stood up. “I’m so tired of hearing this crap,” he snapped at Arnold.

Activity in the room stopped, and heads pivoted to Belmonte. Arnold turned to face him too. He waved his cane at Belmonte.

“You need to listen to autistic people,” he said.

Tensions have bubbled over in conferences ever since. At INSAR, stories circulate about hostile parents berating neurodiversity proponents, and autistic self-advocates shouting at researchers during presentations. There has been enough friction that in 2020, INSAR leadership put in place an official Policy Against Harassment and Discrimination, laying out, among other things, rules against doxing, stalking and disrupting talks or events during the conference.

At first glance, the tension is not hard to explain: After decades of exclusion from the decision-making that affected their very lives, some autistic people began fiercely fighting for a seat at the table. But the issue is more complex than just a power struggle, and it’s threatening progress across the field.

From 2015 to 2018, researchers at Yale University recruited children for a study investigating the fear response in autistic versus non-autistic children, enrolling toddlers about 2 years old from both cohorts. With parents close by, the children interacted with a toy spider, a person wearing a “grotesque” mask, a stranger and a toy dinosaur — for less than one minute per item — while researchers gauged their reactions.

When the study was published in 2020, Memmott put out a 23-tweet thread, which included statements such as that “it seems” no one on the Yale team cared what happened to the children, and that there was “no mention of ethical oversight.” Her thread was retweeted more than 750 times and quote-retweeted more than 500, and her followers weighed in. One called the study “Nazi-like,” another labeled it “sick child torture,” and a third labeled it “f*****g abhorrent.” One account laid out a three-part action plan, calling for identifying the paper’s authors and tagging them in criticisms and protests; informing Yale donors that they were funding child abuse; and notifying the police, because “a crime is still a crime.”

Onward this spun, until Yale and the study leaders put out a statement nine days after the paper was published. The release pointed out that “descriptions of the study have been misinterpreted” and that the study had been cleared by Yale’s institutional review board, adhered to federal ethics guidelines, and obtained signed consent from parents, who could withdraw their children at any time.

Yet autism activism has also stopped studies from even starting. The Spectrum 10K project was announced in August 2021, with a plan to collect the genomes of 10,000 autistic people living in the U.K. (and biological family members, where possible) via saliva sample, as well as request that participants complete a questionnaire. It was launched with considerable fanfare — or propaganda, depending on your viewpoint — and the reaction from the autistic community was immediate. An online petition called “Stop Spectrum 10K” soon appeared on change.org, as well as a “Boycott Spectrum 10K” Facebook page and Twitter account. The hashtag #StopSpectrum10K circulated.

There were some concerns about the study’s lack of transparency around its aims, and worries over conflicts of interest, consent issues and the long-term use of biodata gained from the saliva sample. But the reaction also contained a darker undercurrent. Some commenters said Spectrum 10K would be used for “genocide,” or to “stop autistic people from being born in the future,” or to “wipe out autistics with high support needs.”

Spectrum 10K was paused amid this noise, less than three weeks after its initial announcement. An ethics board investigated and asked for modifications, and the study was cleared to resume in May 2022. But the blowback highlighted a larger problem. A researcher from the U.K., who asked not to be identified for fear of being targeted, told me that the singling out of specific researchers around the Spectrum 10K project felt ominous. Watching it, he worried that young scientists would be spooked straight out of the field, and he said he knows “people who’ve either left academia or just gone to study something else” because of the toxic environment around autism research.

Yet the hostility in autism research is not only aimed at non-autistic researchers. Botha, who has also considered leaving the field, said there have been “quite a few” autistic graduate students, research associates and Ph.D. colleagues who have walked away from their academic dreams because they find the language, literature and environment around autism research to be “traumatic,” and because of hostility from non-autistic researchers.

These young academics “end up sitting in my office, sitting on a Zoom call, crying, having some sort of breakdown and leaving the field,” Botha said. “And the problem is no one talks about it — no one notices.”

Boyd knows that younger researchers want to “figure out how to partner with autistic stakeholders,” but he worries that tense audiences like this and online bullying may keep early-career researchers from getting into the autism space “because they’re afraid of being canceled.”.

The 53-page report was chaired by Catherine Lord and Tony Charman, and it included another 30 co-authors.

Within two months of the Lancet report’s online publication, the Global Autistic Task Force on Autism Research — some two dozen autistic groups from around the world — published an open letter to the commission, criticizing (among other things) the proposed use of the term profound autism, calling it “highly problematic.”

What Lutz is complaining about is called partial representation, a term used to describe a group — political, social, whatever — that purports to speak for the entirety of its members but fails to do so.

McCoy said that to avoid partial representation in autism, a group would need to interact with those who are able to articulate their own interests, but also those with the “most profound autism” and “patients and caregivers,” as well as doctors and others. If a group relies solely on “engagement with autistic self-advocates to understand the interests of the broader autistic population,” then it “carries a risk of bias,” the paper states.

The paper also suggests that partial representation has long been a part of the broader autism community. “At least in its early days, Autism Speaks failed to engage appropriately with autistic self-advocates,” the authors wrote, “while ASAN [the Autistic Self Advocacy Network] has failed to engage appropriately with parents raising concerns on behalf of their children.”

Zoe Gross is director of advocacy at the Autistic Self Advocacy Network (ASAN). She is autistic and has worked in advocacy for more than a decade, including with the American Association of People with Disabilities. She also founded the Disability Day of Mourning in 2012.

The day is meant to commemorate people with disabilities who were killed by a parent or other household member through direct action — or sometimes inaction, such as neglect. The group behind it has archived hundreds of names, going back as far as 1980. The event that spurred the founding occurred on 6 March 2012, when a woman named Elizabeth Hodgins, in Sunnyvale, California, shot her autistic son George, 22 years old at the time, and then committed suicide herself. The husband came home to find the bodies.

This of course made the local news, and given that the mother was already dead, reporters tread lightly, carefully avoiding blame as they tried to explain how such a horrific thing could have happened. Newspapers relayed that George was “low functioning and high maintenance,” and had limited use of language. Reporters wrote that he had formerly gone to an autism center but for a few months had been at home full time, often alone with his mother. Neighbors speculated that Hodgins was exhausted from this new, constant caregiving, and that she’d had a nervous breakdown.

Yet no one interviewed an autistic person. If they had — if they had spoken to Gross, for instance — they would have gotten a different view of things. They would have heard that the tragedy here was not that George was autistic, as the reporters seemed to suggest, but that he was murdered. They would have heard that George’s disability did not somehow make that murder more acceptable. And they would have heard that George’s death would be mourned by those who knew and loved him, that his life had value.

That line of thinking was nowhere in the media coverage. And it is exactly this kind of blindness from the mainstream majority that makes self-advocates as tenacious as they are. For decades in the medical arena, autistic people have been studied “in an extractive way,” Gross said. Scientists asked for genetic material, or a brain donation upon death, but wanted no input from autistic people on what to “do with those things.” The relationship was all take and no give.

ASAN has worked forcefully, often collaboratively, for change in the world of autism. The group has official positions on applied behavior analysis (ABA), genetic research and discrimination in health care, among many other areas, but ASAN understands that a key to advocacy is compromise, and that toxic behavior makes it easy for policymakers to ignore you.

So it is not ASAN that is comparing autism researchers to Nazis. That comes from legions of individual Twitter handles, Facebook accounts and online warriors whose power lies in their outraged tone and sheer volume. Many of these people are young, autistic and not particularly interested in hearing the nuances around scientific terminology or explanations on why all genetics is not eugenics. They have gathered online to fight against a world they feel has callously swept them aside for decades, and that sometimes includes non-autistic trolls and the parents of autistic children.

“I think those of us who are neurotypical are going to have to do a little bit of acceptance that we’re going to feel uncomfortable in this space right now.” Brian Boyd
With good reason, for autistic self-advocates have countless moments in history to point to: the Willowbrook scandal; the use of “aversives” in ABA therapy; the ties between autism research and eugenics. Given that these things occurred within the past century, autistic self-advocates are correct in continuing to sound the alarm, said Ari Ne’eman, disability activist and ASAN co-founder. And anyway, there are technological advances today that need careful scrutiny. It’s possible there could be a prenatal test that “speaks to probabilities” for autism, he said, which could lead parents to abort autistic children. And, he said, if one considers the possible use of CRISPR technology to modify heritable genetic conditions, then the concerns of autistic people around eugenics are “legitimate.”

Autistic people and advocates are also keenly aware of where true power lies, and it’s not on Twitter. Shannon Des Roches Rosa is senior editor of Thinking Person’s Guide to Autism, a neurodiversity advocate and the parent of an autistic child. She said it is the biomedical community and its funders who hold the key to the future of autism research, leaving the “disenfranchised” autistic community with just its voice. It is unreasonable to expect that the voice will always be diplomatic, especially given that autism can be considered a social disability. “And sometimes,” she said, that voice will “come out as bullying. Because what other power do they have? I mean, they’re furious. But that doesn’t mean they’re wrong.”

Often what they are furious about boils down to money. Ne’eman said that the greatest return on investment for autistic people comes from services and quality-of-life studies, and those areas are “dramatically underfunded.” Indeed, the greatest portion (44 percent) of autism research dollars in 2018 went to questions around the biological aspects of autism, as tabulated by the U.S. Interagency Autism Coordinating Committee. The second-largest portion (about 20 percent) was “risk factors,” which encompasses both genetic and environmental concerns. That is more than 60 percent of funding dedicated to the causes of autism. Meanwhile, services and lifespan issues were allotted just 6 percent and 3 percent of funding, respectively.

Much of this imbalance comes from the existence of specific funders such as the Simons Foundation (of which Spectrum is a part, though editorially independent). The Simons Foundation Autism Research Initiative gave out more than $44 million in grants in 2021, aimed solely at understanding, diagnosing and treating autism. Neurodiversity advocates would like to see more going toward services and quality-of-life issues, but the portions of the pie are unlikely to change unless the U.S. government increases its funding or organizations such as the Simons Foundation reimagine their mission.

Yet even the differing goals for research do not fully explain why neurodiversity advocates and researchers (and some parents) are so dug into their positions. That also comes down to matters of the mind.

Damian Milton is autistic, a senior lecturer in intellectual and developmental disabilities at the University of Kent in the U.K., and a consultant to the National Autistic Society. He’s also the father of more than one neurodivergent child. He is outspoken and active on Twitter, and for these reasons has faced his share of criticism — even from neurodiversity advocates, some of whom find him “not activist enough,” he said.

But he’s maybe best known for his paper on the double empathy problem, published in 2012. It has become a central tenet in thinking about how autistic people interact with the rest of the world.

Miscommunication caused by the double empathy problem makes de-escalation harder. But so can the nature of autism itself. As Des Roches Rosa pointed out, autism is categorized as a social disability. And researchers have long suggested that inflexible thinking is a component of it. They are loath to point that out publicly when discussing today’s tensions, but some suspect that the logjam in dialogue has something to do with the characteristics of autism.

But there is another theory, too. Both sides openly acknowledge the online bullying. Yet neurodiversity leaders and social-media accounts with large followings have done little to curb it. That might be partially because muffling the anger seems pointless. Botha doesn’t believe “there is a tone that will particularly be accepted.” Autistic people are forever dismissed as too angry, too irrational, biased — easy excuses researchers use to “discount what autistic people are saying,” Botha said. So what is the point of trying for a more acceptable way of speaking? It won’t matter.

It might be tempting to view the autism community as three distinct warring factions: autistic self-advocates, non-autistic parents and non-autistic researchers. It is not that simple.

Milton believes a good first step toward better relations would be requiring young researchers to be trained on language use. If principal investigators are sending their Ph.D. students out to recruit participants or present work without knowledge of the current controversies or language sensitivities, then they are “setting that student up for quite a traumatic experience,” he said.

Experienced researchers agree with this.

In social and political movements, activists have a range of tools at their disposal. Collaboration is one, and groups like ASAN have used this to great effect. Confrontation is another tool. Social media has been a boon to communities of all kinds, including to the neurodiversity movement, but it has also made confrontation an easy tool to deploy.

But the problem is that confrontation sometimes fails in the long run. As a tool, it operates as a kind of hammer: good for smashing things and getting attention, but not for winning hearts and minds.

Yet even Anagnostou, who has been criticized online herself, can understand this. She knows that many autistic people have been living difficult lives in a neurotypical world for a long time. She knows they are sick of it. And she knows self-advocates play a critical role in driving change.

“So I’m OK with the hammer,” she told me. But those wielding it need to know its limitations. “The minute you equate my work with Nazis, it is very hard — as much as I try to see that position with respect — not to feel personally attacked,” she said. Accusations like that are not made in good faith, nor do they recognize her years of service to a needful population, and without at least that modicum of truth about her life and her efforts, in those moments of feeling attacked it leaves her unwilling to engage in conversation.

The end result is more polarization, a halting of progress and a decrease in collaboration. For those reaching into the toolbox for the hammer, she said, “we need to be clear that that is not moving us forward.”

This article made me appreciate even more what we have here on Wrong Planet. We are far from perfect but more often then not we disagree without being disagreeable. I would specifically like to thank Carlos55 and Mona Pereth. They have set an example of how to fundamentally disagree and have intelligent, civilized debates.

Everybody needs to get off or at least minimize their use of twitter.

Anti Cure and pro cure do agree on some things such as ABA being bad, electric shocks being bad. The two sides working together will get more accomplished. This will be hard because they are at loggerheads on so many issues but it is worth a try.


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25 Jan 2023, 3:41 pm

Sad this type of thing is going on, the only people being hurt are autistic people, especially the most disabled and without a voice.

The only way i think this will ever be resolved is to retire the word "autism" or "ASD" and have separate categories based on type of disability and its related gene (if discovered).

Maybe researchers could then investigate the relevant neurodevelopmental disorders rather than the controversial label "autism", that doesn't have a long term future anyway since its being gradually sliced down into various different conditions usually named after the genetic mutation or scientist who discovered it.


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26 Jan 2023, 3:53 am

Quote:
Yet the hostility in autism research is not only aimed at non-autistic researchers. Botha, who has also considered leaving the field, said there have been “quite a few” autistic graduate students, research associates and Ph.D. colleagues who have walked away from their academic dreams because they find the language, literature and environment around autism research to be “traumatic,” and because of hostility from non-autistic researchers.

These young academics “end up sitting in my office, sitting on a Zoom call, crying, having some sort of breakdown and leaving the field,” Botha said. “And the problem is no one talks about it — no one notices.”


This is Unsurprising as its probably internal conflict going on.

If you`ve bought into the neurodiversity view of autism as a harmless natural difference but everyday in a test tube your confronted with evidence of genetic mutations associated with autism that directly cause disability, sickness, deformity and death you’re going to have a hard time at work.

Science doesn’t care for people`s opinions or religious beliefs if a particular gene is a T rather than a G it can be very bad right in front of your face and it doesn’t care how you feel about that.

Like a Christian fundamentalist researching dinosaurs getting angry at the carbon dating machine when it comes back with evidence the earth is not 5000 years old.

Many of the opinions of the ND movement are alt reality and not based on science so they are not compatible


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26 Jan 2023, 5:36 pm

Venting:

:( So much bad stirred in with so much good.

"If you've met one Autistic you've met one Autistic." It seems that is often unappreciated.

+- Is Autism a disability? Sometimes! It depends on the individual.
+- Should Autism be accepted? Sometimes! It depends on the individual.
+- Is Autism understood? NO! And that should be remembered and respected.

I'm not surprised Internet Autism discussions sometimes get toxic. I thought that happened on many topics.

But I do believe it is important to protect the privacy of AutisticALL children. I personally think parents should not share much on the Internet about their children. Whether in pictures or text. Whether the kid is Autistic or not. And by moving the discussion to anonymous forums (such as WP!) they can discuss their kids without publicly attaching the discussion to their kid. Photos, however, probably do not even belong on anonymous forums.


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26 Jan 2023, 6:07 pm

Double Retired wrote:
Venting:

:( So much bad stirred in with so much good.

"If you've met one Autistic you've met one Autistic." It seems that is often unappreciated.

+- Is Autism a disability? Sometimes! It depends on the individual.
+- Should Autism be accepted? Sometimes! It depends on the individual.
+- Is Autism understood? NO! And that should be remembered and respected.

I'm not surprised Internet Autism discussions sometimes get toxic. I thought that happened on many topics.

But I do believe it is important to protect the privacy of AutisticALL children. I personally think parents should not share much on the Internet about their children. Whether in pictures or text. Whether the kid is Autistic or not. And by moving the discussion to anonymous forums (such as WP!) they can discuss their kids without publicly attaching the discussion to their kid. Photos, however, probably do not even belong on anonymous forums.

This selfie culture is horrible. Videos of the kids having meltdowns could lead them to be bullied later on. This is done on the assumption that the kid is too “low functioning” to know what is going on. That might not be true, just because a kid is non verbal does not mean the kid does not understand what is going on. And even if the kid does not know what is going on now that is no guarantee he won’t later. The video will still be out there to embarrass or worse.


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26 Jan 2023, 9:03 pm

Don't think this will get resolved soon because both sides are talking about totally different things.

For one side, autism is defined by behaviour as laid out in the DSM. For the other side, autism is an identity.

Just compare https://www.cdc.gov/ncbddd/autism/hcp-dsm.html with https://autisticadvocacy.org/about-asan/about-autism/. They are two very different concepts.

And because both sides use the word "autism", when one side talks about "behavior", the other side thinks they are talking about "identity", and vice versa, causing deep misunderstandings.



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27 Jan 2023, 2:08 am

Social media are toxic and period.

I quit facebook and other social media platforms and only go to forums.
Even forums if unmoderated can become toxic.

Internet discussions are often dominated by various people with different ideas.

One single mother can only do so many things a day.
She certainly does not have time get random advice and opinion.

Unfortunately not everyone knows this and so falling into the toxic quagmire of social media can get them in bad situation whether its their fault or not.



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27 Jan 2023, 3:16 am

It's not quite accurate to describe this as a "war between parents of children with autism and autistic adults," because some parents (including even some parents of severely disabled autistic children) are on the autistic self-advocates' side. It's also a "war" between parents with different ideas about what constitutes good parenting of autistic kids.

Anyhow, Kerry Magro says one thing I strongly disagree with:

Quote:
“Small, localized Facebook groups are best for therapy referrals and other advice in your local area. ... It’s a good way to move away from all that toxicity online.”

How about small, local Meetup.com groups, if the point is to be local?

I very strongly do NOT recommend Facebook, for privacy reasons, due to Facebook's "real names" policy. Both to protect one's kid's privacy and to protect oneself from any possible harassment from whatever quarter, it really is a whole lot better to use a platform that officially allows pseudonyms. (Meetup.com is fine with pseudonyms as long as you don't abuse them, e.g. by impersonating someone else.)


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27 Jan 2023, 4:52 am

ASPartOfMe wrote:

Here is the Twitter thread for the Spectrum News article.

More Twitter commentary:

- Monique Botha (who was featured in the article), an autistic autism scientist, wrote a long thread beginning as follows:

Quote:
We are going to talk about this article so buckle up. I am featured and I am not particularly happy with how I am featured in it, given the depth and breadth of what I discussed in my interview. I am not happy at the lack of nuance in the portrayal of autistic people

In a branch of the thread, Monique Botha says:

Quote:
It's easy to say "you're not like my child" to an adult who has changed considerably, but was like their child. And then it's easy to ignore the child because they're only a child and don't have "capacity" to have that voice. There's always a reason to dismiss people.

Non-speaking autistic people, autistic people with learning disabilities, mental illness, who are in care, or unhoused, or who need help with things like self-care activities are vulnerable to extreme forms of abuse and ableism. It's the advocates I see recognizing that.

- Ann Memmott, another person featured in the Spectrum News article, posted a Twitter thread giving background on some other people mentioned in the article.

- Amy Gravino wrote:

Quote:
I spoke on a panel at IMFAR (now INSAR) at the pre-conference day in 2015. The moderator was named in the program, but the names of the autistic panelists (myself and two others) were not. We need to listen to each other, but researchers truly need to listen to autistic people...

- Steven Kapp, an autistic developmental psychologist and disability rights activist n the U.K., wrote:

Quote:
Article interviews @milton_damian & @shannonrosa but omits both have adult autistic child who’d qualify for “profound autism”, but both oppose term. It mentions but misgenders Jim Sinclair & omits lack of speech until age 12. Neglects @aneeman ’s PhD studies. Unnecessary division!

I too noticed the mis-characterization of Jim Sinclair, founder of the first known group of autistic adults (see History of Autism Network International), as someone with allegedly no knowledge of what it is like to be a severely disabled autistic person. As noted in Steven Kapp's comment, Jim Sinclair did not speak until age 12.


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Last edited by Mona Pereth on 27 Jan 2023, 5:55 am, edited 2 times in total.

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27 Jan 2023, 5:41 am

Here on Twitter, Robert Chapman says:

Quote:
One thing several recent articles on autism research politics do is frame the divide as being one between "researchers and parents" and "neurodiversity proponents". This framing itself is misleading. The divide is most fundamentally about being pro or anti eugenics.

I know so many professionals who’ve left the dark side for therapeutic collaboration. So many parents who recognized the harm they had been doing and reversed course.


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27 Jan 2023, 7:12 am

Mona Pereth wrote:
It's not quite accurate to describe this as a "war between parents of children with autism and autistic adults," because some parents (including even some parents of severely disabled autistic children) are on the autistic self-advocates' side. It's also a "war" between parents with different ideas about what constitutes good parenting of autistic kids.


From the article
“It might be tempting to view the autism community as three distinct warring factions: autistic self-advocates, non-autistic parents and non-autistic researchers. It is not that simple. There are non-autistic researchers aligned with the neurodiversity movement; there are autistic applied behavior analysis therapists, there are parents of autistic children who support a mix of views. The messiness of the dynamics might make it seem even harder to come together.”

And of course there are anti ND movement autistics. Jonathan Mitchell is the most well known.

I have criticized some parents who talk about their kids “superpowers”

The view that the “Autism Wars” is mostly between “curabee” parents and adult advocates was mostly true 10 years ago but is far from binary now

And as noted the fact that many of the top ND advocates are or used to fall under the “profound” description is missing from the article. No surprise. I have complaining about this idea that ND advocates are as a group high functioning/not autistic/do not have real autism are ignoring profound autistics because they are clueless/elitists/supremacists almost since the moment I arrived here. It is an unshakeable core belief behind the anti ND movement backlash.


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Last edited by ASPartOfMe on 27 Jan 2023, 8:14 am, edited 1 time in total.

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27 Jan 2023, 7:55 am

Overall that twitter reaction further reinforced my advice for all seriously involved to stay away from that platform. Overall it came across as people demanding an article to both agree with them 100 percent and discuss every aspect of their agenda. In other words woke.

One can not expect an article written by an NT to get it 100 percent right. Even if it was written by an ND advocate space requirements will inevitably mean important nuance is lost. I am not saying the is perfect and that all of the criticism is unwarranted. For all of its faults that article was as lengthy and covered more different aspects of the “autism wars” as any I have seen. The historical reasons for ND advocates distrust was laid out. I was impressed with the interview with Dr. Damian Milton the autistic author of double empathy theory. I found his tying together the double empathy issue with the toxicity of the autism wars enlightening.

I would think an open minded reader who came to the article literally ignorant of the issues involved would come away from the article with a good understanding of said issues dispite some important detail left out.


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