Media/pop culture Autism attitudes vs lived experience

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I'm glad that media and pop culture are starting to pick up on the neurodiversity model and understand that Autism =/= mental illness. I'm glad that there's support for Kayla Cromer and Matilda in this new TV show. I'm glad that Greta Thunberg is being respected and disability advocacy is starting to pick up. (Though some of you may know that I believe the social model of Autism and the neurodiversity movement to be limited.)

I guess one of the things that frustrates me is how all this intellectual, pop culture buzz that allistics love nowadays doesn't seem to be translating to anything meaningful in our day to day lives. I'm in a disability studies class where students pay lip service to the social model of disability, but no one on campus seems accepting of Autism. And I don't mean tolerant (as in, tolerates you but doesn't appreciate you). There is still a huge disconnect from those adept in mainstream forms of communication, and those of us who never quite got the hang of it. That can't be remedied with demands to "treat Autistic people equally" because:

1. I don't appear Autistic to my classmates, just weird, (label-centric activism is limited when the label is invisible to begin with)

and

2. NTs can't force themselves to like me. Particularly if I accidentally cross boundaries or send off unintentional negative messages. This isn't a case of "systemic oppression" stemming from arbitrary stigma against a label. We are shunned in large part because of real problems that we had prior to being given the dx.

Then I see allistics of all people clamoring around "neurodiversity" as the "new frontier" without realizing that they may be mistreating and shunning Autistic people on a regular basis. It's not hypocrisy. They're used to identity politics, which implies mistreatment of another due to arbitrary stigma attached to a specific identity. (PoC or LGBT, for example.) We, on the other hand, suffer from actual problems that can't easily be fixed. So while I'm glad that there's more positivity, the kind of allistic media buzz atm seems more like allistics hopping onto what they think will be the next social justice civil rights movement, without knowing or appreciating how complex and difficult the issue is, and how a positive spin on the "Autism" label will do little for us if our actual deficits in behavior are not ameliorated or at least addressed. So in the end, it leaves a bad taste in my mouth, bc a lot of this seems like the kind of "fake altruism" you see amongst social justice campaigns nowadays.

This doesn't often happen to me but I agree with every word in your post. Very few people know I'm on the spectrum but I see how they treat my son.

Something else that bothers me and I noticed with my son: people would (very benevolently) over-explain obvious things to him as if he's an idiot. They might have the best intentions but it's patronising and pisses him off, especially if they volunteer such "tips".

I think sometimes it gets much worse with high-functioning people: there's some kind of short-circuit in people's minds and they cannot quite process that you can be so adept in some ways and so inept in others.

It's called virtue signaling.

This has got to be one of the best posts I've seen on WP in a long time. I'm probably a bit more pro-ND/Social Model than Whale_Tuune (I actually know Ari Ne'eman IRL, though I have never been involved with ASAN in any capacity apart from visiting their HQ in DC once, and this was after Bascom succeeded Ari as president and turned it into an SJW-fest), though I get annoyed when people get too SJW about it. I too am glad that autism acceptance seems to be slowly on the up. I haven't watched this new TV show, but something like that would never have been approved by any major network when I was in middle andr high school, which wasn't even that long ago. I fully agree though that we need a lot more than for Autistic/Disability activism to just de-stigmatize our label(s); NDs and sympathetic NTs alike need to work toward actually improving our outcomes in this unforgiving world.

Very true, NT`s use this for popularity boosting. You can see this throughout the celebrity world, not just ND obviously but everything, racism, global warming, anti trump, LGBT, feminist issues etc...

Celebrities need popularity to survive and make a living.

Unpopular = no movie / music deal

When the door is closed or they are off social media they are completely different.

Its all lies.

I would guess that most "weird" people are neurodivergent in one way or another, if not autistic.


I've had the good fortune to have been involved in some highly nonmainstream oddball subcultures that were genuinely very accepting and accommodating of a wide variety of personal idiosyncrasies. Thus they were de facto very autistic-friendly (at least to young autistic women), without anyone even mentioning the "A" word. (One of those subcultures is New York City's polyamory scene, about which see a more up-to-date view by a young autistic woman here.)

While I no longer participate in those oddball subcultures, I now live in a highly multicultural neighborhood with immigrants from many different countries around the world, and with no one dominant ethnic group. Here too I get treated well for the most part, despite my oddities, because there is no single narrow cultural norm to conform to. Things like eye contact and body language vary by culture.

For my boyfriend, too, living here is a huge relief. Throughout his life, he has been treated badly by a lot of people on account of his speech impairment -- whereas, here in this neighborhood, his speech impairment is just another accent.

Based on my life experiences, I know that it is possible to have an autistic-friendly community. What's necessary is a social milieu in which it is genuinely accepted that people differ in many ways and on many levels.

Such social milieux are rare but they already do exist and they are attainable. The only questions are (1) to how to make them attainable for all (or at least most) autistic people, not just those of us who live in the most cosmopolitan parts of the most cosmopolitan cities, and (2) how to make them attainable in ways that will enable more of us to find (and keep!) decent jobs without knocking ourselves out to "pretend to be normal."

But creating an autistic-friendly community will require a lot more than just talking about it. We need more of us to do the work of building a much better-organized, better-connected autistic community than now exists. (See my Longterm visions for the autistic community.)

Only then can autistic people be equal partners in (let alone the center of) the larger "autism community," which currently is dominated by (mostly NT) parents and professionals. Only then will we be in a position to, for example, persuade large numbers of the wealthier NT parents to create autistic-friendly businesses to employ both their own autistic offspring and other autistic people from less wealthy backgrounds.


There's an important distinction we need to make here: Autistic-friendly social skills vs. blending in with NT's. It will be much easier for us to focus on developing what I call "autistic-friendly social skills" if we aren't also burdened with trying to look like NT's.


Until we, the autistic community, manage to get a lot better organized, we won't be in any position to teach them how to turn that "fake altruism" into something that will actually benefit our lives.

Admittedly the nature of autistic impairments makes organizing very difficult, which is probably the main reason why we are so far behind other disability communities in this regard. But we need to find ways to do it.

EDIT: See also the separate thread Starting and leading autistic peer support & social groups.

I'm not blowing off your idea of peer support groups @Mona_Pereth, I just am so busy that I can't really be involved in starting one up in my area. I don't think Autism friendly community spaces are a bad idea though. I just don't see much widespread acceptance in overall society happening any time soon.

I'd be interested in hearing about what you would deign an "oddball culture". I can't be involved in polyamory because I'm Christian. Are you aware of any other subcultures that would be more accepting of those on the spectrum?

Indeed, "widespread acceptance in overall society" won't happen before a well-organized autistic-friendly subculture is built and shows the way. It's nice to have a bunch of famous people making autistic-friendly noises, but that's nowhere near enough. And I'm afraid that, without the existence of an adequate autistic-friendly subculture, the autistic-friendly noises will just provoke a backlash (as is already happening even among some autistic people here on WP, let alone in the larger society).


Most of the subcultures I got into in my 20's through my 40's involved either nonmainstream sexuality or nonmainstream spirituality -- probably not anything you would want to be involved with. (I'll have more to say about them in the adult sections if anyone wants to talk about them.) I brought them up only because they gave me a strong taste of what an autistic-friendly world could look like.

Besides being very tolerant of personal idiosyncrasies, another characteristic of some of these subcultures, especially the sexual ones and especially the polyamory scene, was a strong emphasis on consent and clear communication rather than relying on subtle hints. That's another thing an autistic-friendly subculture needs, and indeed is my model for the concept of "autistic-friendly social skills" as distinct from trying to blend in with NT's.

Edit i realize im stuck on the ‘mental illness’ point and havent addressed anything but terminology which the thread maybe is not about

..
Im trying to understand this thread but I cant.

I want to know where I stand but if I can’t understand there’s no way to know my opinion. But I just know that ASD makes life difficult even dangerous whether the danger is immediately evident or over time.
I dont know if your saying that autism isn’t making life very stressful ..because in my view it does. Even if im all alone
I.e. its not just society. The nicest and most accepting ppl ..still I will struggle

Like I told cathylynn ... even getting dressedis an ordeal for me.

So I dont know if that is categorized logically as mental illness or just plain obstacles that u cant get rid of permanently.. is there a better term for that?

Functioning lecel as they say and diagnose.. from what i see level three...is very imminent danger that is often obvious in cause and effect to an outsider.

But! Any other level can drop to level three temporarily due to things out of their control .. its impossible to predict but one can gauge.. like I know if I have a meeting with someone afterwards the next four five days I will have private meltdowns. And need to rest more.

To me...High functioning just means that the danger is a different kind but again the orbit broadens so you are exposed to more ppl and have more responsibilities which in turn opens up a whole different set of problems with broader repercussions.

I clearly remember In school I daily fell and tripped amd hurt my knees. And scraped my hands.broke a tooth etc.

But outside of school I dont.

Why .. because the processing that school took took my brain away from coordinated movements.. my mom wd yell at me that I dont walk in a straight line.. my teacher wd make me sit after class to say stop leaning and drooping. But the processing of the situation made my body limp and hard to move properly at times.
Or if I sat upright I cd no longer focus the same way.

So is that mental illness, physical, I don’t know. But it’s real

I experience and have to actively guard against that too. I think it's termed "cognitive shutdown" and is both mental and physical in that the mind gets taxed beyond its physical limits and then 'goes offline' so to speak, causing a disconnect in control over the physical body, whereby you may be able to move but without normal automation (like the experience of having to consciously will each individual muscle to move and try to attempt to coordinate them properly without any guidance of natural instinct to assist), go catatonic, or lose consciousness entirely.

IE: a very vulnerable and potentially dangerous situation that can be triggered by events beyond our control, often made worse by loss of language skills at the same time to be able to communicate what is happening to others.

Yea but I dont thnk I addressed the point of the original post so it’s not relevant I suppose. I just don’t think outside attitudes changing will alleviate all the daily problems much.

It might but I doubt it.

It's relevant in that it's part of some our lived experience that doesn't get a lot of representation. Like when people look down on us for being over-protective of boundaries or unable to do what many consider trivial things or able to things sometimes but not others, because they don't see the even bigger potential dangers or bad - possibly irrecoverable- consequences we have to protect ourselves from. That a lot of what is objectively observable isn't the whole picture, and I thought that was one of the points the original post was making. But maybe I am misinterpreting.

In a more autistic-friendly world, you would be allowed to sit in whatever position you need in order to focus on the lesson. You also would not be yelled at for your inability to combine "coordinated movements" with academic learning.

This wouldn't solve all your problems, of course, but at least it wouldn't exacerbate them.


It's an "impairment" but not necessarily an "illness." Innate impairments, such as learning disabilities and physical clumsiness, are not usually called "illnesses" unless they are extreme.

In a more autistic-friendly would, people would respect our boundaries more, and it would be more widely understood and accepted that people can have many different combinations of ability and disability.


The O.P.'s main point was to question whether a more autistic-friendly world is even possible. (I strongly believe, based on personal experiences mentioned above, that it is indeed possible.)

To clarify my main thoughts about neurodiversity/the social model of disability when applied to autism:

Concrete goals (ie ASD participation in policy making, positive non-stereotypical depiction in pop culture, accurate representation in media, protections for Autistic people against sexual assault, de-stigmatizing harmless "Autistic-associated" behaviors like stimming, echolalia, and special interests, better special education and reformed mental health system, etc) that neurodiversity activists espouse are all great, and I fully support them. I also support autistic-friendly community organizations.

I become skeptical at attempts to broadly paint the Autism Community as "just another way of being" and being Autistic as an "alternative identity" that has been "systemically oppressed" by an "ableist society." Reasons I am skeptical of such a depiction of the community are that:

1. I am not sure exactly what we classify "Autism" as, or who is or who is not Autistic as an identity. The actual label with its criteria is of course subject to change. It is also subject to geographic and temporal bias (ie, Japan often diagnoses Autism in kids who talk too loudly, where we in the US see lack of eye contact as a sign of "Autism"). It is not an objective fact. So on some level, "Neurodiversity Activism" becomes "stop bullying weird people" which...yes, but anti-bullying campaigns have been around for a while. It seems like if you say "stop being mean to weird people" NTs don't listen to you. If you start using a label like "Autism" and saying it's an oppressed identity, then they start listening... I use the label chiefly because it's better than being called creepy or crazy, and it gets people to listen. Also, we get to have these discussions on WP surrounding experiences that we share. Still, how one defines who is "Neurodiverse", "Autistic", or "Neurotypical" seems pretty subjective at times.

2. I can't say that we are "systemically oppressed" given what I've learned about systemic oppression. PoC and LGBT, for example, are essentially normal people who were given a label intentionally in order to make them marginalized in our society. By contrast, every "Autistic" person is marginalized before he is given the dx. So while the label/category itself is a social (or psychological) construct, the actual impairment we experience is independent of the construct, which is not the case for groups typically considered "oppressed". (The label they are given is instrumental in their oppression. This is more complex for people with ASD. Some may say an ASD label oppresses them, but many, including myself, experienced marginalization long prior to and independently of the label, especially if we don't regularly self-disclose. In fact, I prefer people identifying me as "Autistic" as opposed to "weird" or "creepy".) This is part of my critique of identity politics and label centric activism. It may accomplish something, but traditional identity politics is an oppressed group reclaiming an identity that has been leveled against them. PoC are discriminated against for the identity itself. Same with LGBT. That's why label-centric activism is so essential. ASD is more complex than that. Which brings me to...

3. We are so diverse that obviously, some people would benefit from medical treatment. Others, if not from medical treatment, would benefit from extensive therapy. So there are flaws we have that we have to work on. Some things society can accommodate, some things I don't think society can/will accommodate on a wider level. If neurodiversity activists try to impede research into alleviating some symptoms of Autism, that's a problem. The social model says "wider society is the problem". I don't know if this can hold true for ASD. Those working with de-stigmatizing Autism can keep trying, but should not try to edge out other models of disability (imo). John Elder Robison and Simon Baron-Cohen have recently both called for a synthesis of the social model and medical model of disability. I think we should also consider finding immediate community and connection for people on the spectrum even if wider society does not become more accepting, and more integrated approaches to social skills coaching and therapy. "Autism-friendly Social Skills" and "Autism Friendly Community Centers" are a good idea, I just don't see it necessarily changing global society (though I'd love to be proven wrong).

So in this sense, I'm fine with much of what Mona_Pereth is suggesting. I don't want to broadly paint "Autism" as an oppressed minority group or completely oppose medical treatment for ASD symptoms. (On a sidenote, I also think a "cure for Autism" is a bad term. Most medical treatment for behavioral conditions will mitigate symptoms or make them easier to live with. They will not "erase" your personality, and they're usually pretty targeted to specific symptoms. We seem to be coming to understand that most psychological categories are more complex and nuanced that DSM guidelines would suggest, and aren't really "illnesses" in that they don't have one specific underlying etiology. Medication would go after debilitating symptoms, not "Autism" itself, which is a nebulous entity anyways.)

tl;dr: I agree with many concrete initiatives neurodiversity activists take, but I am skeptical of "neurodiversity" as an all-encompassing ideology.

Not just "stop bullying," but also "start accommodating," so that more of us can do productive work and not drive ourselves crazy.

But, yes, "neurodivergent" is essentially a fancy word for "weird," and the neurodiversity movement is essentially a movement for the right to be accepted as a harmlessly weird person.


The label "autism" is also what can bring us together into support groups and into forums like Wrong Planet. As you mention below:


It is indeed.

The LGBT community has had similar arguments over who is included. In particular, what used to be called just the "gay" community or the "lesbian and gay" community had lots of arguments over the place of bisexuals.

(For that matter, the Black community has had similar arguments over the place of people who are interracial to varying degrees.)


That distinction is not quite accurate regarding LGBT people. In a society with rigid gender roles, anyone who violates those gender roles in any way will be persecuted, regardless of what label, if any, is applied to them.


The relative advantages/disadvantages of being identified as "Autistic" vs. just "weird" will vary depending on your social milieu. Among your classmates in a disability studies class, it's probably a whole lot better to be known as "Autistic." On the other hand, others here on WP have reported that when they revealed that they were autistic, everyone suddenly started treating them like a little child. So the label is a double-edged sword.


Not very many of us would object to "research into alleviating some symptoms of Autism." But there have been a lot of objectionable things about the specific goals of much of the research. More about this below and in other posts.


At the very least, various aspects of the wider society do make the problem a lot worse than it would otherwise be. That's true not just for autism, but for disability in general, which necessarily entails an underlying intrinsic impairment of one kind or another, but is made a lot worse by a lack of accommodations.


A better-organized, better-connected autistic community won't "necessarily" or inevitably change global society, but it's a necessary prerequisite to changing global society, in much the same way that a diverse and highly organized gay social scene was a necessary prerequisite to building an effecting LBBT rights movement, and in much the same way that the black churches and the historically black colleges were a necessary prerequisite to building an effective black civil rights movement.

In any case, "finding immediate community and connection for people on the spectrum" will improve our lives (and perhaps improve our social abilities at least a little bit) even in the absence of the desired longterm social changes.


The oppression of autistic people is, in various ways, very different from the oppression of people of color. But there has still been some pretty horrible oppression of autistic people -- under whatever label(s), if any, we were known in any given era -- especially the more severely disabled autistic people. The latter, along with "feeble-minded" people in general and other disabled people in general, were among the targets of the Nazi death camps, for example. Here in the U.S.A. it never got quite that bad, but we did have forced sterilizations and some pretty awful institutions like Willowbrook, and to this day there's still the Judge Rotenberg Center.


That's not a side-note; it touches on one of the key issues. As you say below:


Yes! What you've described is what the goal of medical autism research should be.

But, alas, it seems that quite a few researchers still have the holy grail of directly treating "core symptoms of autism," e.g. a pill that would magically do something as complex as giving us social skills. (See this thread, for example.)

IMO it would be much better to have a pill that helps with some underlying neurological issue such as executive functioning ability, which in turn would likely have the indirect effect of making it at least a little bit easier for us to improve our social skills too.

But the idea of a magic social skills pill is such a holy grail that the researchers mentioned here are going straight from trials on mice to trials on human children, without first waiting for results of tests on human adults. (The pill presumably does improve the social skills of mice, who socialize in ways very different from, and much simpler than, the ways humans do.)

Another issue: medical autism research still focuses heavily on genetics, which opens a lot of ethical cans of worms.


While I'm not against medical treatments for various autism-related conditions, I am against the goal of a "cure." I believe that the goal of a "cure" is unrealistic (for various reasons, one of which you stated above) and ethically problematic in various ways, some of which I have written about in various previous posts.

Last edited by Mona Pereth on 22 Feb 2020, 8:42 am, edited 2 times in total.