What can you tell me about Autism?

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I'm having to learn about autism for my work, it's a new subject to me and I'm finding it fascinating. For example we have a kid who can't speak, tie his shoes and is not toilet trained at 12 but has a fascination with numbers and can put flash cards in numeric order, no problem.

I read that computer programmers have a larger incidence of autism, and therefore have more autistic kids. I've run across several organizations with basic information, but I am very interested in "on-the-ground" eyewitness-type experience with it.

What can you tell me about autism in K-12 kids?

Orbit (Orbit), Tuesday, 9 September 2003 00:14 (twenty years ago) link

Absolutely nothing, except the one thing that comes to mind when autism is mentioned: a casual friend of mine had a daughter with Tourette's syndrome, and before the doctors decided on Tourette's, they thought she was autistic ... which really screwed with the way I saw both of those things.

Tep (ktepi), Tuesday, 9 September 2003 00:22 (twenty years ago) link

Interesting, I've just been reading up on this myself.

REad "An Anthropologist on Mars" by Oliver Sacks. Two of the case studies within are about prodigious autists - one young guy who is a very good artist, and a woman with milder autism who is some kind of scientist. Sacks is very readable, no medical jargon to wade through, and his footnotes recommend other works you could then branch out to.

I used to live with a friend who had Aspbergers syndrome (a sort of very mild autism) He was socially very odd, couldnt deal with a lot of people, refused to use the phone, really struggled with day to day stuff like going to work. But he could read a programming book from cover to cover and pick apart code at assembly level like a demon.

Trayce (trayce), Tuesday, 9 September 2003 00:31 (twenty years ago) link

I was at a conference this weekend, and an MD explained that Tourette's, tics, and Autism are related and can mimic each other. It was interesting. It seems that Tourette's is the first thing that the doctor has to rule out before they can go on to Autism as a possiblity. They also talked a lot about "the autistic spectrum" but this stuff seems to play out in so many unique combinations in individuals. I had heard of the Sacks book but never got around to it--my reading list just grew! Grrrrrrr. ;-)

Orbit (Orbit), Tuesday, 9 September 2003 00:45 (twenty years ago) link

My half-brother is a very low-functioning autistic who has spent the bulk of his 33 years living in group homes and other state-run facilities for the developmentally disabled, as well as psych wards. He was in the mainstream school system for a while, in special ed classes, but they couldn't keep him there forever, so he was phased out of it.

He was a very verbal child, much like the Leonardo Di Caprio character in Gilbert Grape -- obsessive-compulsive behavior, fixations on certain ideas or words that would lock into his brain for hours on end, a constant need for attention that wasn't so much communicative as it was a performance in search of a Rube Goldberg-style mechanistic A-triggers-B reaction. He acted out a lot, sometimes violently. He was put on heavy medication, and one of his caregivers (I forget who... I think it was the Payne Whitney hospital) wanted to send him to the Behavior Research Institute for electroshock tests and other forms of behavior modification. When he got a little older he started to shut down -- he stopped talking, stopped expressing himself, didn't speak unless he was spoken to directly, and then only reluctantly, in the simplest yes/no terms. This is what he's like now... it's sad to think of how lively he used to be compared to how physically slow and zombielike he is these days.

Does he have Rain Man-style "savant" qualities? Well... he's great at puzzles. He can read (a bit). He remembers song lyrics he hears from the radio and sometimes sings them at random. But there are many different degrees/faces of autism, and the Rain Man is by no means representative of all of them. If anything autistic people are known for being exceptionally quiet and withdrawn. The Asperger's strain is a bit different -- it betrays a lack of social skills through exaggerated behavior and failure to pick up cues. But in general, autists can't, in a basic fundamental way, relate to other people. That's all I know...

animal wrangler (Jody Beth Rosen), Tuesday, 9 September 2003 01:44 (twenty years ago) link

My folks thought I was autistic when I was really young, but it turned out not to be the case. The Sacks book Trayce reccomended is just great, by the way. Really, really liked it.

s1utsky (slutsky), Tuesday, 9 September 2003 01:47 (twenty years ago) link

Jody - yeah it's often assumed that all autistic people have a savant talent of some sort, and they don't always. It just happens to be a lot higher than in normally functioning people (from memory, Sacks said something like 25% of austistic people develop a savant skill of some kind, as opposed to 1 in 10000 in regular people, something like that).

Trayce (trayce), Tuesday, 9 September 2003 02:00 (twenty years ago) link

Another excellent author on autism is Temple Grandin. She is autistic, but very high-functioning and has a PhD. She recognizes that a huge amount of the communication of 'normal' people is social in nature, but she can barely decipher it and finds it maddening and pointless.

Aimless, Tuesday, 9 September 2003 03:57 (twenty years ago) link

I live with someone who has mild Asberger's (or Asburger's?) Syndrome ... like very mild autism. He struggles to read people and has difficulty understanding and identifying emotions, but he's also loving and caring and giving. I cannot imagine how difficult it is for him to function with someone like me, who is so emotional.

My sister's M.A. is in Special Ed., concentrating on Autism in pre-K groups. If you're interested, Orbit, I can have her dig-up a reading list on the topic.

(And I second An Anthropologist on Mars as being an interesting introduction to the topic, and lots of Temple Grandin's works, too.)

I'm Passing Open Windows (Ms Laura), Tuesday, 9 September 2003 04:14 (twenty years ago) link

related link on Asperger's and electro:

Electro and Asperger's syndrome

colin s barrow (colin s barrow), Tuesday, 9 September 2003 04:17 (twenty years ago) link

My oldest nephew, Rowan, is a kind of high-functioning autistic called hyperlexic. He started talking latish, and learned to read on his own around three. When he was a toddler, he would read and repeat all kinds of signs when riding in the car -- his father thought he was just memorizing the shapes, but he was reading. Rowan tends to get extremely "into" things (would make a fantastic record collector!) from Thomas the Tank Engine (which his mother says all the autistic kids they know love) to Barbie. He's smart, funny, and kind of weird in a way that's hard to explain. The stereotype of the autistic kid is that they're socially reserved, but Rowan is extremely loving towards his family and friends. He's gone to regular school all along, sometimes with an assistant. He's just started regular junior high school, hope the kids aren't too much of bastards to him.

Layna Andersen (Layna Andersen), Tuesday, 9 September 2003 04:20 (twenty years ago) link

I'm especially interested in Asperger's Syndrome. I think there are others here who can speak about it.

Texas, Biyatch! (thatgirl), Tuesday, 9 September 2003 04:34 (twenty years ago) link

The fascination with high functioning levels such as Aspbergers is that FOCUS a person with it gets on things. Fixating on things, collecting things, photohgraphic memories, brilliance at the sciences or art, etc.

I thought more about my friend with it - he collected his hair in a bottle, and 20 cent coins for every year the mint pressed them, and every copy of the Green Guide (local weekly tv guide) for years and years. Very odd things, but stuff that would once have been passed off as "eccentric". Now I guess we have a better understanding of these things.

Trayce (trayce), Tuesday, 9 September 2003 04:45 (twenty years ago) link

Actually, that raises an interesting question, Trayce: Do you think that maybe these sorts of things are being 'over-diagnosed'? At what point does an individual eccentricity move into the realm of being a medical problem? Is society losing the more creative/genius people because of medical diagnoses and medication and other treatments?

(I ask because a friend is considering Lithium to treat Manic Depression and is worried about losing his desire to be creative, which is what happens ever time he's been on the medicine. He says that with the medication he looses all of his spark of life and so forth, but that he cannot continue to function with the depression in its current state.)

I'm Passing Open Windows (Ms Laura), Tuesday, 9 September 2003 04:57 (twenty years ago) link

Yeah that thought did occur to me as I was typing it, and I agree it may be the same with bipolar, ADD, etc.

I've found myself constantly worried over wether I'm "sane" because I swing from manic activity and higely high moods (hence my "thanks" post the other day) to an extreme crash to the point of paranoia and inability to leave house 24 hours later... but I dont want to go see someone about that, because I *like* my weird moods, theyre what give me my fire and my creativity.

Trayce (trayce), Tuesday, 9 September 2003 05:00 (twenty years ago) link

*nodding* Exactly! I guess that such stuff needs to be addressed medically, when one cannot function in society as a result of the emotional alignment. I mean, I think that sometimes we've become a society that seeks explanations and solutions as to why anyone would deviate from the 'norm,' without ever acknowledging that no-one is 'norm.' Whatever happened to the days when eccentrics were viewed fondly? (Okay, maybe not ALL eccentrics. But some.)

I'm Passing Open Windows (Ms Laura), Tuesday, 9 September 2003 05:11 (twenty years ago) link

I'm in the minority on this apparently, but here's something copied from my blog, www.espressowerk.blogspot.com

Are Creativity and Insanity Linked?

It's been said here and there that creativity is aligned with mental illness. The evidence cited is usually correlative, which is to say, there is plenty of evidence that mental illness is more prevalent in the artistic community than in the general community (incidentally, what a Victorian curio is that phrase, ‘mental illness’ – a sickness in the mind).

Correlations... they are the very devil. They invite us to draw causal relations where none have been established. Poverty is higher in the artistic community than the general community too? Are we going to conclude that poverty is congenial to art? Are you an artist? Do you find it really helps not to be able to afford to repair your equipment, buy your paints and canvas, pay the rent? Do you get the album finished more quickly because you break a guitar string and can’t afford to replace it? Because you can’t afford a studio, a rehearsal room, a CD burner to run off demos? Or does it hinder your creativity? It's the latter, isn't it? Poverty and being creative are correlated, they go hand-in-hand, but the former does not cause the latter. Maybe being creative causes poverty though! However, even though this seems more plausible, the correlation itself is no evidence. We can’t conclude anything causal from a correlation.

‘Oh, but poverty makes you resourceful’. No it doesn’t. Being aware of resources make you resourceful. Poverty just limits your resources. A good thing? How is that a good thing? It's an imposition to have limited resources: an imposition which we accept and work around, because we have no choice.

Insanity might be the demon that destroys creativity. It might just be the searing delusion of personal grandeur, resplendant in hallucinatory visions of self-reference and destiny, with all the attendant paranoia, that undoes an artist. Now, that might be worth considering.

Plenty of great art has been made by people who went through periods of mental instability. However, we are not entitled to assume that what we admire in the likes of Syd Barrett, Roky Erikson, Brian Wilson and others was created from their insanity. It seems more plausible that it was created from their sanity, since their productive years were also their sane years. When they lost their sanity, they were unable to create comprehensible art.

'Oh, but they were really, really inspired on the run-up to the full-blown psychosis'. Isn't that tantamount to saying they were at their most creative when they were sane yet full of energy? Is that conclusion too obvious and commonsensical to be exciting to our romantic sensibilities? Or would we be equally comfortable saying that the acceleration of a car is caused by the crash that results from accelerating too much? The form of the argument which claims that insanity assists with creativity is the same, and equally absurd.

Sanity is definitely underrated, as it does not fit in with our rather romantic artistic schema. However, if an artist can give to his or her audience a dose of genuine sanity, what more is required?


As a basically sane artist who finds it hard if not impossible to work when too high, too low, too paranoid/delusional or too obsessive, I've always been puzzled by the alleged link. I have read several biographies of artists and writers (eg William Styron - "Darkness Visible") that take the opposite line, ie, that mental illness impedes creativity.

Incidentally I do think that Aspergers types (I don't high functioning autism as a delibilitating mental illness but rather a personality characteristic with marked advantages and disadvantages) tend to crop up in electronic music, especially in Kraftwerk-influenced electro. But my evidence in support of this is minimal at best. Just based on a handful of people I know really, not what you'd call good evidence at all.

colin s barrow (colin s barrow), Tuesday, 9 September 2003 05:20 (twenty years ago) link

But in general, autists can't, in a basic fundamental way, relate to other people.

That's one of the things I remember from studying this in college. In experiments, autisistics show no ability to place themselves in another person's shoes. They don't quite seem to grasp the concept of other people having brains and inner dialogues/motivations.

oops (Oops), Tuesday, 9 September 2003 05:29 (twenty years ago) link

Here's a good statement of the skeptical view that there is a link between madness and creativity, from an article on the Journal of Creativity by John Briggs (link below quote):

"The alleged link between pathology and creativity is strong in the minds of a great many creativity theorists, in fact an article of faith. And every decade it receives a new expression (the manic depressive is the latest). The reasons for this probably have to do with the profound uneasiness our culture has over uncontrolled creative activity. Labeling high level creativity as somehow pathological or necessitating pathology, enables us to keep it at a distance where we can admire creative products and ourselves avoid creative process-a process which is inherently destabilizing to our images and categories of self and society."

http://vax.wcsu.edu/~briggsjp/Omnivalence.html

colin s barrow (colin s barrow), Tuesday, 9 September 2003 05:40 (twenty years ago) link

I have a number of online acquaintances who have diagnosed themselves with autism or asperger's, because they're a bit socially awkward. This seems a bit much to me.

Layna Andersen (Layna Andersen), Tuesday, 9 September 2003 05:46 (twenty years ago) link

Colin - you make some fair points. I did a talk in my diploma at RMIT where I correlated madness and literature, and managed to piss off a reasonable portion of my class in the process.

I don't think its fair to say "one must be mentally ill/mad to be creative" - in fact in severe cases this can and probably does impair anything getting done. It also probably isnt helpful to deify people with serious problems as great artists, if in fact they are completely insane and doing something like killing people (look at Chopper Read or Charles Manson for eg)

I'm not sure if I'm trying to make any kind of point here... and this is veering way off the thread topic, but it is avery interesting area.

Trayce (trayce), Tuesday, 9 September 2003 05:53 (twenty years ago) link

Sorry for deviating slightly off topic too, but it sure is interesting, and apparently has a long history too. From the Human Brain Informatics Site (link below quote):

*****************************************************************
Even in Greece the relation between madness and genius survived. The written collection Problemata is usually attributed to Aristoteles who lived in the 4th century BC. One of the written documents begins with the question:
"How come that all men distinguished in philosophy, statesmanship, poetry or art are melancholics and some of them to such an extent that they are affected by the illnesses originating from the black bile (melaines choles), of which the story of Heracles tells us?"
******************************************************************

http://www.hubin.org/facts/history/history_schizophrenia_en.html


colin s barrow (colin s barrow), Tuesday, 9 September 2003 06:02 (twenty years ago) link

Maybe we need to start another thread on this, cos this is something I've always been interested in (then again so is autism, and other neurlogical/mental pathologies - I wanted to be a mini Oliver Sacks when I left school, but it was too much maths :/)

Trayce (trayce), Tuesday, 9 September 2003 06:04 (twenty years ago) link

I realise this thread is going off topic, but here's my own story.

Incidentally, this is my first post on ILE (I'm a lurker and occasional poster on ILM).

I didn't realise anything was "wrong" with me for a long time. I ended up drifting into working with street kids and abused kids in the UK and Western Canada. I was passionate about the awful treatment of these kids, and the indifference of "mainstream society" toward their plight. A few kids hit rock bottom. Worse.

Then, one day, I couldn't handle it any more; the stories seemed suddenly more brutal and stark than I could take. Toward the end of 2000, in one week, I lost two kids in a week; one, a 14 year old girl who hung herself in her basement after being bullied mercilessly; the other, a 14 year old boy who was beaten to death by other teens because he had "sold his ass" on the streets (and was therefore "a fucking fag", naturally). I walked away.

I thought I'd go back, but as the dust settled and I allowed myself to reflect on shit, I started to receive more and more memories from a past I thought I knew, like a bad radio connection. I thought I was losing my mind, memories of my own sexual abuse at age 8 surfaced, so after the usual denial and shit, I swallowed my pride and went to see a psychologist (okay, on the advice of my family doctor). Long story short, but I ended up on antidepressants, was given a diagnosis of post traumatic stress disorder (exacerbated by the vicarious trauma of working so long with damaged kids) and clinical depression. Yeah, I was sexually abused as a kid. Yeah, I thought my mom had died after an accident I witnessed. Yeah, I was almost beaten to death by a street swarming in my early 20s. Blah blah. But suddenly I understood why the fuck I'd been working with kids all those years.

But here's the kicker. I wrote and wrote and wrote as a teenager. I played guitar and painted. I was a creative kid. But as soon as I started working within the so-called social services field, any creativity (in that sense) atrophied, died. I became damn near hollow. It's only in recent months -- since I walked away from a decent job, since I abandoned myself to chance, since I acknowledged my emotional meltdown and, more, moved on past it -- that the spark has returned, and I'm writing again, feeling again.

This is an admittedly simplified story. Pretty fucking personal and anecdotal too. But I wonder whether true artistic, creative impulses don't fully emerge after staring at oneself candidly, nakedly; that (stable or unstable) it might not require genuine courage in order to confront your (one's) true nature, after which the juices flow ceaselessly.

In other words, a proclivity toward depression is only part of the story. Grabbing it by the horns is just one way to shake everything up, assert your personality, say "I'm not gonna be seen as a collection of fucking symptoms in the DSM-IV for mental health professionals to wank over". I'm gonna get past this. (I can feel the palpable urge to burst into the "hold me closer, tiny dancer" scene in Almost Famous here, but, mercifully, I'll resist).

David A. (Davant), Tuesday, 9 September 2003 07:42 (twenty years ago) link

That's an amazing thing to read, David. It reminds me much of the life of *my* David, who has found that, like you, the creativity and fullness of life seems to come only when he's able to confront and come to terms with himself. Thank you for being so upfront about your experience.

I'm Passing Open Windows (Ms Laura), Tuesday, 9 September 2003 07:59 (twenty years ago) link

You're welcome. It was pretty scary, though. ;-)

Funnily enough, a really close friend of mine always signs off his e-mails with "keep passing the open windows".

Maybe there's a tribe out there, a web of connections, however tenuous.

David A. (Davant), Tuesday, 9 September 2003 08:08 (twenty years ago) link

*laughing* Tell that friend of yours that if he got the tag-line from The Hotel New Hampshire then I admire his taste. If it came from somewhere else, I'd be interested in knowing the source.

I can imagine it was scary, but that's what makes it even more impressive that you wrote and posted it ... blew me away (er, in a very good way, I mean). It brought tears to my eyes, which I think is a plus (I'm in the mood to cry, for some reason. You did well).

Let's form a tribe ... I'm all for a commune of fascinating people with which to grow.

I'm Passing Open Windows (Ms Laura), Tuesday, 9 September 2003 08:19 (twenty years ago) link

Wow David, what a wonderfully moving post. And I think you've hit on something very important in your approach to this whole concept, also. It has puzzled me for a long time what the crux of the mental issues/creativity thing is, and I think thats a lot closer to it than anything ive thus far read/considered. Thanks!

Trayce (trayce), Tuesday, 9 September 2003 08:28 (twenty years ago) link

Here's me ignoring ILE in favour of ILM all these months and all the "cool" people have been here all the time!

Yes, I'm pretty sure it was from The Hotel New Hampshire, and yet, for some reason, I'm reminded here of the quote attributed to Lester Bangs in the movie Almost Famous (sure, all you hipsters, sneer away):

(apologies if it's wrong, but it's from memory)

"The only true currency in this bankrupt world is what you share with someone else when you're uncool".

That's so oddly endearing.


David A. (Davant), Tuesday, 9 September 2003 08:41 (twenty years ago) link

Damn right all of the cool people are here on ILE!!! (And some of us cross-over to ILM, too, but only those select few. I'm not one of them.) Welcome to the friendly and quirky group of folks. I'm always glad to see another night owl. (Er, or day owl, depending on where you're posting from.)

I'm Passing Open Windows (Ms Laura), Tuesday, 9 September 2003 08:46 (twenty years ago) link

Definitely night (Pacific coast, Canada)! I'm an unredeemed insomniac. Although I'm going to have to at least attempt to sleep in a minute.

David A. (Davant), Tuesday, 9 September 2003 08:53 (twenty years ago) link

Hey, I like Almost Famous, so dont feel bad David! ;)

Damn did this thread ever get off track, heh.

Trayce (trayce), Tuesday, 9 September 2003 09:05 (twenty years ago) link

Yeah, off track it has gone ... sorry, Orbit. I guess that's the pattern for ILE, but I do feel badly about it anyway (even as I contribute to the problem).

I'm Passing Open Windows (Ms Laura), Wednesday, 10 September 2003 02:27 (twenty years ago) link

Not off track at all. Thanks for all the interesting and thoughtful contributions, and I've love a reading list acutally! One of the parents brought in a recent issue of Time Magazine (not the best source for research) that was interesting, saying that 4 of five autistic children are male. I had some problems with the article in the genetics vs. socialization department, but as a lay article it was pretty interesting.

The over-medicalization of the humn personality that some people talked about is also a concern of mine; we are socially constructing 'disabilities' that once just suited someone to a unique place in the social division of labor. The autistic person who was unable to deal with social cues would perhaps do focused, complex work like woodcarving, copying manuscripts, being librarian, census-taker or some other job that required cataloging and attention to detail. Now that so much of that is done via computer, it doesn't surprise me that many of these people end up computer professionals and collectors of various things.

One of the things the Time article brought up was that autistic kids are fascinated by spinning objects, and prefer structures (bridges, buildings) over people when they are able to choose a photo of one or the other thing.

Keep it coming and thanks for the input! I'm having to learn a lot about ADHD, autism, and learning disabilities, medications, conditions that mimic other conditions and so on. It's a bit overwhleming, and all the input is very much appreciated.

Orbit (Orbit), Wednesday, 10 September 2003 04:40 (twenty years ago) link

Revive!

Newsweek, for the week of September 8, ran a couple of articles on gender and autism. Basically posits the idea that autism is just a sign of someone being more masculine in their traits than feminine (er, I am way over-simplifying here). I'd link to the articles, but it's a pay-per-view site, so you might want to Google it or see what you can find at the library. The research that the article referenced might be of assistance, too. (My mother photocopied and sent the article[s] to me, and if I can find where I filed them at I'll scan them into pdfs and pass them along.)

Oh, something else interesting ... the article talked about early-intervention research, with children as young as a year old, and that seemed to have some good results, overall.

Anyway, I'll continue to pass stuff along as it crosses my path.

I'm Passing Open Windows (Ms Laura), Thursday, 18 September 2003 06:29 (twenty years ago) link

one year passes...

I've been thinking about the origins of autism a lot lately, and it since it seems to have a lot to do with language, I'm wondering if the proliferation of media has any relationship to it, since the ubiquitousness of media = the ubiquitousness of language and signs that 'autistic' people have trouble with. This could be why interest in the subject keeps growing and growing, and we increasingly encounter autistic types on the internet.

This makes sense, since people who have this condition are attracted to computer jobs, and numeric language is finite. Autistic people I've dealt with have difficulty with multiplicity of meaning - it makes sense that they would become increasingly frustrated as the signs multiply.

Just brainstorming here.

it's mashed potato time! (dymaxia), Friday, 6 May 2005 17:39 (eighteen years ago) link

three years pass...

Guys my best friends 2 y/o kid was just diagnosed with Autism. They think with the communication level he has (eg pointing when he wants something) could mean that the diagnosis could be reversed at some point, posibly before he starts school but he needs serious therapy right now for that to happen. Her drs have told her he nedd software called B04rdm4ker (image recognition etc) which runs at the ridiculous price of $339US ($500+ AUD) which she cant afford. ANyway Ive looked around the internet (ebay included)and cant find anything cheaper. Any suggestions?

she should look better if she's gonna be a bitch like that (sunny successor), Friday, 21 November 2008 22:38 (fifteen years ago) link

nowhere you can nick a copy on the net? a torrent or something?

stone cold all time hall of fame classics (internet person), Friday, 21 November 2008 22:45 (fifteen years ago) link

i dont know. i cant work that stuff out. any sites you can suggest?

she should look better if she's gonna be a bitch like that (sunny successor), Friday, 21 November 2008 22:46 (fifteen years ago) link

if you google "boardmaker +torrents" there's quite a few hits. dunno how many are still up, i'm sure you must know someone who could help you out with this sort of thing without downloading a million viruses or whatever. i'm loath to recommend anything that might screw up your computer.

stone cold all time hall of fame classics (internet person), Friday, 21 November 2008 22:50 (fifteen years ago) link

thx guys!!

she should look better if she's gonna be a bitch like that (sunny successor), Saturday, 22 November 2008 01:32 (fifteen years ago) link

two years pass...

http://www.thirdage.com/news/dsm-update-to-remove-aspergers-from-autism-spectrum_05-24-2011

This is good news for people with mild autism that don't want to be classified alongside Asperger people (whom have very different mild autism characteristics).

Muttley vs. Mumbly (CaptainLorax), Tuesday, 24 May 2011 20:39 (twelve years ago) link

Now if only the new DSM update will change PDD-NOS diagnosis so that it's no longer a free-for-all categorization of all autistic folk that don't fit into other autism diagnoses. I mean that's just lazy diagnosing.

Muttley vs. Mumbly (CaptainLorax), Tuesday, 24 May 2011 20:44 (twelve years ago) link

Would prefer they used "Condition" rather than "Disorder". As a guy with Asperger's once pointed out to me, who's less disorderly than peeps on the Autism spectrum?

Deeez Nuuults (Noodle Vague), Tuesday, 24 May 2011 20:48 (twelve years ago) link

i dunno abt that, ilx can get pretty restive at times

Romford Spring (DG), Tuesday, 24 May 2011 20:50 (twelve years ago) link

ten months pass...

http://www.nytimes.com/2012/03/30/health/rate-of-autism-diagnoses-has-climbed-study-finds.html

what will the world be like when autistic ppl outnumber non-autistic ppl? will non-autistic ppl be labeled empathetics? will they learn how all the faces on the chart mean the same thing?

Mordy, Friday, 30 March 2012 03:21 (twelve years ago) link

what will the world be like when autistic ppl outnumber non-autistic ppl?

― Mordy, Thursday, March 29, 2012 11:21 PM (19 minutes ago) Bookmark Flag Post Permalink

how im gonna make up something universal, doesnt even make any sense: IT"S THE TOP 100 COMEDY FILMS RESULTS THREAD

Whiney G. Weingarten, Friday, 30 March 2012 03:41 (twelve years ago) link

haha

iatee, Friday, 30 March 2012 03:43 (twelve years ago) link

crooked timber posting some good stuff about autism this week

Mordy, Tuesday, 3 April 2012 20:53 (twelve years ago) link

two years pass...

Today my son was punching me, scratching my face, trying to gouge my eyes out, he ripped my shirt and he grabbed my glasses and snapped them. This violent anger is a newish thing to him, it was a rough day. People with ASC can be the worst and best people in the world within the same hour sometimes.

xelab, Friday, 13 June 2014 23:48 (nine years ago) link

A while ago, someone in my social orbit (with an autism spectrum child) posted something about how special-needs parenting resets your expectations of accomplishments.

Other parents are like "my child won a soccer trophy" or "my child is on the honor roll" or "my child plays Mozart flawlessly" or "my child got into Harvard." Special needs parents have things that are more like "my child put on socks" or "my child ate a new food" or "my child said the word 'cat'."

For me, this is one of the most difficult things to express. Something like "we got through the grocery store without screaming" or "we went to a restaurant and didn't need to leave early" is an achievement. For many/most people, it's just something you do. And if you can't, there's something wrong with you as a parent. If you'd raised them right you wouldn't have a problem. If you'd done your job correctly the kid would've behaved.

Okay, you're an ambulance (Ye Mad Puffin), Monday, 27 January 2020 03:20 (four years ago) link

Sorry for the bathos; we just got back from frickin Olive Garden. Felt like triumph. It has tablecloths and silverware! Wouldn't have attempted it a year ago.

And of course this wasn't at all what I envisioned. At my son's age I suppose I was at least expected to politely try sushi or going to the philharmonic or learning ballroom dance or whatever. We're still working on potty training.

Okay, you're an ambulance (Ye Mad Puffin), Monday, 27 January 2020 03:29 (four years ago) link

Sometimes just the smallest steps forwards can feel like they've a huge breakthrough. Like I can recall him learning to ride a bike at 13, or learning to stop next to roads and wait to cross at 11.. some of these things might seem small to parents of neurotypical kids .. but they are major progressions. My lad is 17 turning 18 next month and the last few years have been the toughest.

The problem I have now is his recent weight gain. Because when his behaviour was at its most challenging and he was being violent and self-harming, as a bad coping mechanism I tended to let him have milkshakes and snacks when he requested them as they seemed to be a part of his way of self-regulating and remaining on an even keel. He's much calmer now but putting him on a stricter diet and banning some of the high sugar drinks he's become accustomed to have resulted in some quite angry rages at times. I took him for a glucose/urine test for type 2 diabetes last week and they haven't been back in touch with me which hopefully means he hasn't got it. But that is how worried I've become about his weight.

calzino, Monday, 27 January 2020 08:20 (four years ago) link

two weeks pass...

https://pbs.twimg.com/media/EQxOCMXXYAA5EVp?format=jpg&name=medium

Alex turned 18 last week and is looking good, no signs of glucose/type 2 diabetes in his urine and I've been doing increasingly long as fuck walks with him to help keep his weight down.

calzino, Friday, 14 February 2020 23:14 (four years ago) link

hooray for walking. it is the elixir of life.

A is for (Aimless), Friday, 14 February 2020 23:16 (four years ago) link

you ain't wrong

calzino, Friday, 14 February 2020 23:16 (four years ago) link

good stuff <3

babby bitter (Noodle Vague), Friday, 14 February 2020 23:22 (four years ago) link

because he favours low stimulation environments he often prefers going out at night, but i love the night!

calzino, Friday, 14 February 2020 23:24 (four years ago) link

Good to hear, calz

frederik b. godt (jim in vancouver), Saturday, 15 February 2020 01:34 (four years ago) link

Good gents, would walk with

mom tossed in kimchee (quincie), Saturday, 15 February 2020 02:23 (four years ago) link

https://www.alfiekohn.org/blogs/autism/

kinda long and technical but good stuff and feeds into my other concerns/interests about pedagogy and parenting in general

babby bitter (Noodle Vague), Saturday, 15 February 2020 13:00 (four years ago) link

ABA always makes me think of something on the tv I saw 10-15 years ago about a man with autism who grew up in the late 60's early 70's I think. There was vintage footage of somebody the parents paid a lot of money to yell at him a lot when was a kid and this was seen as some pioneering radical aggressive intervention type treatment that was the way forward at the time. There was an interview with his brother who basically said even when he was young at the time he basically knew it was cruel and a load of bollox and had no discernible affect on his behavioural problems which abated as he got older anyway. It was a very full of shit American academic type who was the torturer in chief, although I've got vague memories of the program, the old footage of her yelling at him because he is non-verbal and not responding to some prompt struck me as vile cruelty.

calzino, Saturday, 15 February 2020 14:09 (four years ago) link

i occasionally used to use the phrase "well, you can train a dog" when people were discussing whatever intervention they'd heard about.

we're still a very long way as a society from getting our heads around the idea of disability as a social formation, or from thinking in terms of difference instead of deficit. partly because to me it raises a ton of questions about what it is to live and to live well, what the point of anything is, and ain't nobody got time to be worrying about that stuff. apparently.

babby bitter (Noodle Vague), Saturday, 15 February 2020 14:15 (four years ago) link

you mention dog training. I was talking to an escort with an adult with autism at Ponds Forge leisure pool. He told me the very well off parents of this lad had him "dog-whistle trained" In complete disbelief I said WHAT? He said "Dog-Whistle Training, I'm not joking" without expanding on it.

calzino, Saturday, 15 February 2020 14:24 (four years ago) link

i can believe it :(

i guess in fairness - and as i say, this goes for parenting in general - some people will go to ridiculous-looking lengths to protect their children (or to convince themselves that they are protecting their children) and i wouldn't want to make blanket statements about the kinds of interactions that might be helpful for individual people. but so many of the interventions with autistic children in particular seem about "normalization", trying to teach people to pass as less autistic or something, and that's really sad and contributes to a society that can't accept individuality and autonomy for neurodiverse people.

babby bitter (Noodle Vague), Saturday, 15 February 2020 14:30 (four years ago) link

something something replication crisis

you know my name, look up the number of the beast (rushomancy), Saturday, 15 February 2020 15:45 (four years ago) link

That hadn't even occurred to me but yeah of course

babby bitter (Noodle Vague), Saturday, 15 February 2020 15:50 (four years ago) link

six months pass...

Some arsehole neighbour phoned the police on me tonight because Alex was having a loud autistic meltdown. At least it was amusing when he walked out of his bedroom stark bollock naked when two WPC's were walking up the stairs to check I'm not some domestic abuser to check on my partner who was in bed! But it isn't funny really, it's just a form of harassment. The cops were ok when they realised the situation, but i sincerely hope the cunt that phoned them dies very painfully, very soon.

calzino, Wednesday, 19 August 2020 22:04 (three years ago) link

Argh, I'm sorry that someone did that to you guys. It does sound funny-ironic, but also at the same time very frustrating.

I'd be very tempted to order or print out a bunch of leaflets from the National Autistic Society and passive-aggressively drop them through all the neighbours' letterboxes with big yellow post-it notes saying "an autistic person lives nearby, chill the fuck out". You never know, someone might learn something.

(On a purely personal note, I wish more people understood what meltdowns were, and how *not* to react to them.)

Extractor Fan (Branwell with an N), Thursday, 20 August 2020 06:54 (three years ago) link

when this Rona is sent packing or at least has some advanced treatments that reduce it's ability to wreak so much long term damage, then he will be able to self-regulate much better when more activity options open up again like going swimming and travelling on buses and trains to places. Because as much as routine is important to him, I think the narrow options available to us now (and the last 6 months) are boring him shitless! School (a private NAS school with a very well considered social distancing regime and small classrooms etc) starting again in a week and a half should help.

calzino, Thursday, 20 August 2020 08:54 (three years ago) link

i once got visited by the fuzz at the summer playscheme i was working because somebody had reported a distressed, half-naked teenager being chased around the empty school playground. in that particular case i'm happy to write it off as a concerned citizen, lol. i'm assuming your neighbour's just a dick tho.

no ifs, no buts, no scampo nation (Noodle Vague), Thursday, 20 August 2020 09:43 (three years ago) link

(On a purely personal note, I wish more people understood what meltdowns were, and how *not* to react to them.)

― Extractor Fan (Branwell with an N)

do you know any resources?

Kate (rushomancy), Thursday, 20 August 2020 14:22 (three years ago) link

I mentioned one of the best resources, in my post: https://www.google.com/search?client=firefox-b-d&q=national+autistic+society+meltdowns

Extractor Fan (Branwell with an N), Thursday, 20 August 2020 14:29 (three years ago) link

thank you. i'm a little embarrassed, again, by how little i know about these things given that my nephew is autistic. so that's what the "temper tantrums" i kept being punished for when i was a child were...

Kate (rushomancy), Thursday, 20 August 2020 14:51 (three years ago) link

one month passes...

Even though Alex is a hidden disability mask exemption we decided to try and persuade him to wear one in fairness to his transport escort Anisha who has a husband with diabetes. I thought it would be a waste of time and might even make more problems than it solves, but he's taken to wearing one with total commitment and doesn't take it off until he gets out of the taxi. It probably doesn't sound that amazing but consider me amazed that he has got into wearing one so easily!

calzino, Thursday, 8 October 2020 07:52 (three years ago) link

nice. i guess if he's not uncomfortable with the mask on then he'll commit to the concept full-on.

1000 Scampo DJs (Noodle Vague), Thursday, 8 October 2020 07:55 (three years ago) link

full-on is his middle name. Tbh I think he actually likes the mask on some sensory level or something, he has been happily putting it on 10 mins before the taxi even arrives.

calzino, Thursday, 8 October 2020 07:59 (three years ago) link

Yay for Alex's mask victory! I'm really glad this is a win for you both.

(As a verbal autist, I have to add - once I got past the weird smell of masks, they are a) incredibly warm in cold weather, like I wore one 24/7 in Inverness and I can imagine the warmth is nice for Alex and b) actual masks remove the need for autistic masking of the 'is my face making the correct expression for this situation' variety because no one can see your face!)

Branwell with an N, Thursday, 8 October 2020 08:07 (three years ago) link

Oh that's great. I wore my first one dutifully but found the nose clip uncomfortable after a while. I have a new cloth one which I almost enjoy wearing. So definitely worth trying a few if one gets uncomfortable on the nose/ears/ etc. Likewise on the realisation that I don't need to socially/apologetically smile all the time!

kinder, Thursday, 8 October 2020 08:16 (three years ago) link

He doesn't like too much eye contact or any attention that makes him feel like expectations or demands are being put on him and his most commonly spoken expression is "get out"! And he has always loved huge hoods or brimmed hats, so it makes perfect sense he has taken to masks really, for some reason it took me by surprise.

calzino, Thursday, 8 October 2020 08:17 (three years ago) link

Haha, in this situation, Alex 100% OTM and I agree with Alex ::thumbs up emoji::

Branwell with an N, Thursday, 8 October 2020 08:21 (three years ago) link

very trying morning-through-early-afternoon now heading into the final act of a pretty wrecked day given comic relief when, in the car, Brian Johnson-era AC/DC comes on the radio and my dude, who loves to ask about who a song is by and where the band is from, asks instead of his usual formulation: "Who's that guy, COVID-19?"

J Edgar Noothgrush (Joan Crawford Loves Chachi), Wednesday, 14 October 2020 19:47 (three years ago) link

one month passes...

I just heard this absolute cunt called Henry Normal, reading a supposedly "moving" poem about his 20 year old son with autism. The crux of it was "I saw a hint of the neurotypical man my son could have been and boo hoo hoo!". Offensive and pathetic self-piteous neurotypical drivel that only other myopic bang-average arseholes will appreciate.. just fucking awful .. I feel sorry for his kid for being related to such a prize twat!

calzino, Sunday, 6 December 2020 20:14 (three years ago) link

i roll this out every so often and i wish i didn't feel the need but hey

https://www.autreat.com/dont_mourn.html

Uptown Top Scamping (Noodle Vague), Sunday, 6 December 2020 20:17 (three years ago) link

getting easy plaudits from clueless pundit-class poltroons that don't know shit about autism, whilst undermining your own kid's sense of identity is classic centrist-dad behaviour tbf

calzino, Sunday, 6 December 2020 20:26 (three years ago) link

You'd think after 20 years of living with a family member with autism you'd think some of these dickheads might actually learn something rather than spreading trenchantly ignorant attitudes that make autism seem like a disease or a curse rather than neurodiversity. But then getting applauded for it by people who are even more ignorant just compounds the offence.

calzino, Sunday, 6 December 2020 20:55 (three years ago) link

eight months pass...

Bless the NHS but...

I've slightly lost track but I make it 30 months since I got a referral for an ASC assessment. There is literally no way to speak to someone at the neurodevelopmental department about waiting times (or anything else), the phone line is a recorded message and the email address sends an auto response that says they sre "unable" to discuss waiting times for people who have waited less than the current estimate (which is now 2.5 years according to the email.)

Noel Emits, Monday, 9 August 2021 10:28 (two years ago) link

One irony being that autistic people can tend to like to have definite information about when things will happen, especially potentially stressful and unfamiliar appointments.

Noel Emits, Monday, 9 August 2021 10:33 (two years ago) link

ten months pass...

i might as well say it - i'm autistic. and one of my special interests is music. anybody else deal with this? one of my friends posted a meme yesterday saying "i got diagnosed with ASD after I wore a DEVO shirt to an appointment with a therapist and they called DEVO a one hit wonder and I spoke uninterrupted and aggressively for 40 minutes about how it's not right to call DEVO a one hit wonder" and I feel extremely called out by this given that my reaction to that message was "Well of course who would actually think DEVO was a one-hit wonder, that's absurd!" Right now I am struggling to keep myself from recounting Dave Van Ronk's entire life story to people whose entire knowledge of him is that he was arrested at Stonewall despite not being queer and this makes him, I think, a "sigma male" in their eyes? Which is good?

Kate (rushomancy), Tuesday, 5 July 2022 15:59 (one year ago) link

why would the therapist have said that in the first place? Was it part of the assessment? ... or was it a joke and not an actual experience?

sarahell, Tuesday, 5 July 2022 16:16 (one year ago) link

i don't know, i'm _reading_ it as either a joke or the sort of small talk people make at the beginning of a conversation. i can relate since my infodumping and monologuing has been super bad lately, that's kind of what i started my blog to try to keep under control but it's only going so far.

Kate (rushomancy), Tuesday, 5 July 2022 16:19 (one year ago) link

four weeks pass...

that's absurd!"

Is it like when you know that something isn't just wrong, or maybe not even wrong by some measures, but implies a category error. And you know that explaining this in a real way is going to come across awkwardly, so, not to be too much of a pedantic ass or bend their ears off, and, crucially, keeping within the bounds of the inital assertion in order to meet them half way, you settle on boiling it down to.. you know they had a couple of albums that were moderately large hits as well as the single you're probably thinking of. All of which empathic consideration innevitably really pays off with expressions interest and gratitude from the recipient / victim.

(I'd probably try and duck the whole thing tbh, but I'm not particularly a Devo-tee, if that's the right term. I'm sure given the right trigger I'd be off.)

Noel Emits, Thursday, 4 August 2022 17:13 (one year ago) link

three weeks pass...

I wonder which snitch neighbour will be the first to report me for filling the pool in the garden today. It might be the drug dealer next door, who I kid not phoned the cops on me once when Alex was having a severe meltdown (what kind of a bootlicking dealer tries to get an autist in trouble with the law ffs!). Alex is a priority services customer, suckers - snitch away! Anyway some frequent hydrotherapy throughout this summer break from college has been very important in keeping him on an even keel and maintaining good mental health and isn't a frivolous use of water during a hosepipe ban. Although I wouldn't bother explaining this to people who are bigoted to the core.

calzino, Saturday, 27 August 2022 08:48 (one year ago) link

nine months pass...

I've just had a communication from post 16 transport via a passenger assistant that from now on if the students aren't ready to leave the college within 10 minutes then the taxi can leave without them. It's easy to understand why with a group of mostly autistic young adults engaging in different activities and lessons that it can be difficult to get them to disengage in a timely fashion and be ready on time every day.

I told the passenger assistant that this shit is rank disablism and her line manager who is coming out with this shit ought to be sacked. It's also dangerous because many of them have other health conditions and loads of them have epilepsy. One of his 20 yr old classmates died in his sleep during half-term. The college is out in the sticks and not all parents/carers have cars nor the means to pay £50+ for a return journey taxi to pick them up because transport have decided that they are fucking amazon packages rather than human beings with complex needs. I'm fucking livid rn!

calzino, Thursday, 15 June 2023 07:57 (ten months ago) link

seven months pass...

I feel like there should be a neurodiversity thread but buggered if I can find one. This might be a bit niche, I'm not sure, but this podcast chat with Robert Chapman is good and his book sounds excellent: https://www.everand.com/podcast/702055056/The-Rise-of-Anti-Capitalist-Neurodiversity-Robert-Chapman-s-Empire-of-Normality

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 14:55 (two months ago) link

By 'niche' I think I actually mean 'theorising about neurodiversity' when there are people battling with real-life consequences of a fucked system that does little to aid them or their dependents. I feel like I'm stating my credentials, but ftr I have a neurodiverse kid (and then some) and teach plenty of neurodiverse kids.

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 14:57 (two months ago) link

Chinaski, apologies if I have over-shared on this but. I am looking after a child with a severe intellectual disability.

Neurotypical / non-neurotypical is, for us, a severe understatement. He's not someone with some sensory issues, or a learning disability that can be accommodated for with extra test time or being allowed to use a calculator, but will otherwise be okay.

My son cannot talk, will not go to college, will likely never have a job or date or get married. I know I have already posted about this and it's probably tiresome, but it is where we are.

In the meantime I have nothing but good wishes for all others.

Sane clown posse (Ye Mad Puffin), Wednesday, 14 February 2024 15:16 (two months ago) link

I am aware Puffin, as I am with Calzino, that's why I'm cautious about sharing stuff and sounding insensitive. I can only offer compassion for what you both carry with this.

Fwiw, my son is coming up 18. 'Neurodiversity' doesn't do justice in naming his struggles, even if that's how he's labelled. At present, he's being treated for severe OCD and has been out of education since he was 15. There have been periods in the last four years where he hasn't been able to leave his room (these periods have been up to a month at a time; people take 'can't leave his room' to be a metaphor. It isn't.) He has various ASD traits but has never been formally tested.

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 17:19 (two months ago) link

(It goes without saying but: he is fucking awesome.)

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 17:21 (two months ago) link

Best to you Chinaski

Sane clown posse (Ye Mad Puffin), Wednesday, 14 February 2024 17:31 (two months ago) link


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