General Autism Discussion

That I can see, actually. One-on-one unscripted conversations are a lot harder than following a script and so on.

Interestingly, Temple Grandin gave a speech early in her career where she gave people just the facts and the evidence to support her facts, totally logical, and assumed that would go over well since it was pure logic and facts.

To her surprise, she later read scathing reviews of her speech. She discovered that she needed to make jokes, relate personal experiences, and make eye contact with the audience from time to time. She mastered those things and later gave presentations that people found more engaging.

I went to Wikihow with the intent of seeing how bizarre and random its articles can get.

Interestingly, on the front page, there's How to Distinguish Between Reactive Attachment Disorder and Autism. The link takes you straight to it.

It seems whoever wrote this article did their homework.

I get the small talk thing, small groups are a killer. A group of four or five people is simply something I have trouble conversing with, a room of twenty I can ramble to for an hour easily and a single idnevidual in can engage in conversation for even longer.

The only small group routs I could work well with were seminar groups, give us a task or subject and I'd go to town, I regularly had to sit on my hand during seminars and not let people get away with going "we'll have Silas do all the talking".

Check out Julia! I think they did a pretty great job. Notice how she doesn't make eye contact and talks primarily in echolalia. And Elmo doesn't force her to play with him when she doesn't want to and plays beside her instead.

And look at this one! She's stimming and NO ONE MAKES HER STOP

edited 2nd Apr '17 4:26:47 PM by Cailleach

I'm... Incredibly conflicted about that.

Why so?

Well...

There are many, many great things about Julia and the treatment and understanding she receives, I feel positive about that.

But on the other hand, Julia is also very, very verbally limited. Among a cast of characters who are all ridiculously well spoken for their age (just a reminder: Julia is 4 years old. Abby and Elmo are both supposed to be 3. Abby communicates, both conceptually and in terms of vocabulary, at a level well beyond that and so does Elmo, despite his constant use of Third-Person Person )

And call me crass if you think I deserve it, but after 30+ years of living with Autism that's severe enough that it has a major impact on my life, but not so severe enough that it's noticeable in my casual behaviour, I think it's about time for autism awareness campaigns to take a break from making already visible Autism even more visible and spend some time shining a light on the rest of us on the spectrum.

So yeah, conflicted.

edited 2nd Apr '17 6:55:52 PM by Robrecht

I don't mind that she had verbally limiting autism so much, because the previous "awareness" campaigns for "low functioning" autistics have been terrible. These are the people considered "burdens" on society and on their parents. These are the kind of kids that get murdered by their parents, who get sympathized with while the child is demonized. These people need better representation, and they need it now.

Some of the clips show Julia as clearly intelligent, just verbally limited. That breaks a lot of the stereotypes that our verbally limited compatriots have to deal with.

There are more clips of her too

I really like this one. I don't know how they managed to capture so much in the stationary eyes of a puppet, but the way she looks up at the sky just gets me. I mean that was the class look I got in my eyes as a kid when I was just amazed by something that I couldn't quite verbally express, and that I wasn't even sure my nt friends would even understand. It stuck me so hard that I actually teared up

edited 2nd Apr '17 7:25:25 PM by Cailleach

And then there's one more

I really like that last one. The stereotypical route would be to have Julia melt down there, but instead they had Julia use a slightly non-standard way to solve the issue showing that while she doesn't really talk normally, she's perfectly capable of problem solving and isn't at all stupid.

Julia uses intelligence to figure out how to keep producing bubbles, so that's a good thing too. Figuring out an alternate solution to the problem, something some autistics are very good at.

I did notice something though - and I realize this is true for autistics for the most part (particularly as children, until their social skills get better), but it's something that may cause resentment in children. And that is, the fact that Julia does her own thing and the other kids join in, but she doesn't join into their activity. Well, there's one partial exception to that - Elmo and the doll, which causes Julia to play with her doll similarly to how he plays with his. But for the most part, they adapt to the autistic.

I understand of course that it has to be that way, because if autistics had the social understanding and abilities to adapt to others, they would a lot more often. But they can't, so they don't. But it makes me think of how in many families, life revolves around the autistic.

Actually that's part of my negative feelings towards Julia as a character (and just to reiterate, my feelings are not solely negative). Julia is too intelligent to be low functioning.

Wait... Let me unpack that:

In actual mental healthcare terms the descriptor 'low functioning' when applied to autism has a distinct meaning: It refers specifically to people who have an ASD as a primary diagnosis and a co-morbid mental handicap (in autism this is most often the result of co-morbid Fragile X syndrome) as a secondary diagnosis. ('High functioning' meanwhile, is only ever applied to a period before a diagnosis. I was diagnosed at the age of 16, for instance, and therefore I was considered to have been 'high functioning' until then, but not after. No one who has enough symptoms to get a diagnosis is considered 'high functioning'.) About a third of all people on the Spectrum fall into that category. And speaking of a third: About a third of all people on the Spectrum are completely non-verbal. That's not a coincidence, there is a massive overlap between those two groups. (About 85% of people on the Spectrum who are completely non-verbal are also mentally handicapped to some extent.)

Which means that nearly two-thirds, the majority, of all people with an ASD are both of normal or above average intelligence and to some (if, perhaps, limited) extent verbal...

And outside the occasional cringe-worthy case of Hollywood Autism, that majority is ridiculously under represented. So of course parents freak out and feel like it's the end of the world when they learn their kid has autism, all they ever see is the worst case scenario.

Julia is a good step in the right direction. She's obviously intelligent. When treated with understanding she responds positively. She's not anti-social and actively enjoys the company of others when it's on her own terms. And while she's not very verbally developed, she does communicate. But she's also a Muppet. And that means she'll never grow up, she'll always be 4 years old, she'll never showcase the improvement that all people with ASD who aren't completely non-communicative (including those who have a co-morbid mental handicap) go through as they grow older.

I guess what I should say is: I have 100% positive feelings about Julia as a realistic representation of a 4yo autistic girl. But I have some negative (or at least non-positive) feelings about Julia not having, to give an example, an older sibling whose autism is less immediately noticeable in their behaviour, but no less present or some other autistic character(s) to give a wider recognition to the reality that autism is a spectrum and that for Julia, apparently, singing 'Twinkle, Twinkle Little Star' together is enough... But for most autistic kids initiating that kind of unannounced physical contact is a good way for Elmo to get his non-existent teeth kicked in.

I'd argue that you're wrong to say that she's too intelligent to be low functioning. Asymmetry...

I think they're doing a great job illustrating asymmetry in action. Not only that, but accepted asymmetry. If Julia were depicted in an environment where any suggestion of hers is overridden, all choice taken out of her hands and her being forced to interact in uncomfortable ways... And, she'd most likely appear as dumb as people would expect to see: giving up or blowing up would be the only protest routes open to her.

edited 3rd Apr '17 1:01:55 AM by Euodiachloris

Also, consider that depicting the nuanced reality of growing up on the high end of the spectrum may simply be a little too much to ask of what is, after all, a children's puppet show. What you're asking for would fit better on a program aimed at a somewhat higher age level, like say The Electric Company.

Oh and happy Disability Awareness Month (now if only we could turn that "awareness" into "acceptance") While I was thinking about perception of disability and how I could change it, I actually realized that I've been doing just that for a while.

You see, I'm registered with my school's disability accommodations office, which means, among other things, that I have access to special private study rooms that I can access whenever I want, as opposed to other students who have to reserve the normal ones days in advance. I also work as a tutor, and several of my appointments are short notice, so I don't really have time to reserve the normal study rooms so I've always used the accommodation ones out of convenience. The majority of people I tutor are not accommodation students themselves. So they're not disabled, but the person who's tutoring them is, as they can plainly see by my access to the rooms. I assume most don't actually know what disability I have, but regardless of what it is I can still be smart and sociable enough to be a great tutor despite it. And the fact that we're sharing a desk with all sorts of accommodation technology, like magnifiers, computers equipped with text-to-speech software, and countless other cool gadgets must certainly aid in demystifying the life of a disabled student a little bit.

She's not mentally handicapped ergo she's not low functioning. And we know she's not mentally handicapped because she's too intelligent to be mentally handicapped. I know that when it comes to AS Ds most people think that low/high functioning refers to social/verbal skills....

But those people are wrong.

edited 3rd Apr '17 9:04:01 AM by Robrecht

From what I've seen, "low functioning" refers to multiple different things. Verbal skills, intelligence, and severity of autism symptoms - any one of those things could result in an autistic being called low "functioning".

It was world autism day yesterday by the way, it largely passed under the radar though.

Not he issue of representation, I long for the day when we get representation for adults with autism, or even just teenagers, still representation for autistic small children is a step toward.

"Low functioning" and "high functioning" are far from being concrete things. If you asked 5 different specialists to define them, you'd have five different definitions. I know this, because I have asked at least 5 specialists. Some consider to measure how verbal someone is, some how intelligent, others a combination of factors that determine how well someone can do daily living tasks, others don't use the classifications at all. These are not concrete medical terms.

Right, I keep forgetting how much of a disorderly shitfest the US mental healthcare system often is.

It's partially because terms like that are really hard to define, and can push a lot of buttons when they are. There are some people deemed "low functioning" that find the term very patronizing and don't want it used. And given that autism is such a spectrum (and not just one spectrum, multiple, including verbal skills, intelligence, sensory problems, ability to perform daily living skills, ability to pass, occurrence of common comorbid disorders like epilepsy or anxiety and so many more) it's really hard to differentiate between "high functioning" and "low functioning." So many people are both, high functioning in some areas but low in others. There's bound to be disagreement. I for one think the terms shouldn't be used at all in professional settings, since given their vagueness they don't serve to do anything but offend people

edited 3rd Apr '17 3:24:46 PM by Cailleach

Well, like I said, the only professional use of the term I've heard (but then keep in mind I'm Dutch, so all my knowledge is from Dutch mental healthcare) is for people with a mental handicap (which the internet tells me is the British term, the American term used to be mental retardation and is now intellectual disability). I.e. Kids with a diagnostic IQ below 70 who would still be considered significantly disabled even if they weren't on the spectrum and for whom it's pretty much guaranteed they'll never be able to live unassisted even if their spectrum disorder improves so much they can self manage. When we use it, it's pretty damn clearly defined.

For context kids with that kind of diagnosis, with or without the autism, used to get designated 'non-functioning', low functioning is an improvement, an acknowledgement that while they may not function at 100% of what is expected for their age, they do still function.

Edit: Oh I should also point out that I'm completely and totally ignoring how lay people use the terms. Lay people shouldn't be using them at all.

edited 3rd Apr '17 5:16:32 PM by Robrecht

Trump support for autism awareness overshadowed by recurrent misinformation

"On Sunday, April 2, by order of President Donald J. Trump, the White House was illuminated in blue in honor of World Autism Awareness Day. In an announcement on Friday, Trump called on all Americans to learn the signs of autism to order to improve early diagnosis and understand the challenges faced by those with autism spectrum disorders...

...While providing a rallying call for autism research, Trump himself has been the source of considerable misinformation regarding autism, a trend first noted on the campaign trail that has continued into his presidency.

During the 2015 Republican presidential debate, Trump noted that “autism has become an epidemic,” and – citing the famously debunked 1998 research of Andrew Wakefield linking autism to measles-mumps-rubella vaccines – proposed “alternative” immunization schedules and the possible benefit of delaying vaccination."

6 of one, half dozen of the other...

I honestly almost couldn't believe it, but you somehow gave me a reason to hate Trump even more than I already do. Thank you bigly.