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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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I use he/him pronouns.

I like playing video games, watching cartoons and anime, reading, and cooking.

I have two cats, a rabbit, and a dog. I also enjoy learning + cataloguing information about different types of animals and plants.

Empathy Quotient: 34/80
Systemizing Quotient: 104/150
Friendship Quotient: 56/140
Autism Quotient: 36/80

RAADS-R: 169

CAT-Q: 153
Compensation: 57
Masking: 47
Assimilation: 49

Your broader autism cluster (Aspie) score: 144 of 200.
Your neurotypical (non-autistic) score: 63 of 200.
You are very likely on the broader autism cluster (Aspie).


The_Znof
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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