What can you tell me about Autism?

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.

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.

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.

Damn did this thread ever get off track, heh.

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.

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.

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.

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?

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

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

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.

thx guys!!

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).

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.

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?

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

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?

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

haha

crooked timber posting some good stuff about autism this week

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.

love to u both, xelab

Thanks for your sentiment NV. Was talking to a teacher today about the best way to restrain violent kids, because on friday I was worried about getting arrested. She said she wasn't allowed to tell me the best way because if we get injured following her advice it becomes a litigation issue. I hold his arms and push him towards the ground. His mother can't do that because she is very ill and frail right now. It is a bit of mess right now but we will get through it.

tight hugging is a good way of trying to restrict arm movement i think, has the benefit that some children with autism spectrum conditions find that kind of overall pressure soothing. using your body to deflect them and keep them in a small controlled space feels relatively safe but obv you're vulnerable to kicks/punches at that distance. in general blocking and hugging feel the least dangerous to me but obviously you can judge for yourself.

if you can find/create a safe space that you can withdraw from but contain them until they've calmed down that's best i think. obviously that isn't always an option. most professionals can't express an opinion about restraint and i've got to admit i'm wary of those who are too gung-ho about it.

you will get thru it together, you'll get better and better at spotting potential causes of frustration/outbursts, and your boy will learn ways to deal with that frustration that don't involve violence. i can't imagine how tough it must be at the moment. hope i'm not being presumptuous in talking about this.

It probably sounds a bit savage, but I was restraining him by his arms because his attack occurred next to a busy road and at this flashpoint it seemed the only way. The truth is I was caught cold and even after almost a decade of experience of ASC behaviour I am still not an expert. He has been so chill for the last couple of years and the meltdowns became more infrequent and shorter and easier to bring him out of at times I almost forget about autism.

He had a lot of triggers on that particular day like a long train journey to his fave leisure pool only to find out the timetable has been reduced to weekends only, so then we had a disappointing return journey on a shitty virgin train with no seats, rammed carriage and no air conditioning, full of irritable, sweaty, stressed people. Strangely he coped with all this very well. The attack came after his downgraded swimming session at the local, very basic swimming pool.

Now that I am mentally prepared for any future incidents it will be a lot easier to deal with. My key failure on friday was losing my calm and letting the gawpers distract me, when you worry about gawpers you become self-conscious and less effective at dealing with the situation. Going to start carrying my Autism Alert cards again, anyone got anything to say? Here have a card. That saves a lot of energy and arguing.

just been playing chase with a student round work. gawpers are my weak point too.

Autism risk genes also linked to higher intelligence

Researchers at the Universities of Edinburgh and Queensland analysed almost 10,000 people recruited from the general population of Scotland. Individuals were tested for general cognitive ability and had their DNA analysed.
The team found that even among people who never develop autism, carrying genetic traits associated with the disorder is, on average, linked to scoring slightly better on cognitive tests.

I guess that if you are going to carry out a study, you're also going to release the results and summarize them in a way that highlights whatever information you were able to glean, if any. But it seems to me that discovering a slight increase of cognitive ability among those who carry genetic traits associated with autism is such a qualified and watered down finding that I doubt it sheds any meaningful light on autism at all.

Its akin to the results that find genes predisposing to sickle cell anemia protective against malaria, genes predisposing to schizophrenia are associated with creativity, or genes for lowered skin melanin and higher skin cancer protective against rickets and multiple sclerosis at high latitudes. Its offers an evolutionary rationale for why genetic traits with some very bad potential outcomes have persisted.

There's such a broad spectrum diagnosis of ASDs with the DSM it renders correlations like this meaningless.

I personally believe that throughout human history it is people who would be considered to be on the autism spectrum who have consistently been the inventive outsiders who have been the driving force in engineering, technology etc - all the stuff that has sent apes to the top of the food chain. I can't really back this up with a coherent argument and am slightly biased as someone with an ASD son and a spergerish bro who is a top programmer. But this is just my strongly held unresearched opinion!

Its offers an evolutionary rationale for why genetic traits with some very bad potential outcomes have persisted.

It is clear that the researchers hoped to establish a link of that sort, but it is not clear that the results they obtained are strong enough to prove that link. If this study were to be repeated on further groups of a similar size, with similar results for each study, all it would do is firmly establish that any linkage is too weak to be decisive. Cognitive ability is not very analogous to resistance to malaria.

Just saw the film x+y and I am fucking incandescent with rage

(i'm slightly autistic btw)

Absolutely the biggest pile of reductive, sentimental, poorly-characterised, sloppy, soppy, useless horseshit I can imagine. This Richard Curtisification of mainstream 'British' cinema needs to fucking die. A film about autism by and for non-autists. The irony is inherent. NONE OF THESE CHARACTERS ARE REAL

if any of you liked it I hate you forever

Oh and the soundtrack! Keaton Henson, whoever you are, Google yourself and feel this, my hatred

what do you mean by 'slightly autistic'

And throw in a crude, faux MS sufferer to distract people from from the fucking sub CBBC level of autism knowledge inherent in the script. I only saw the trailer and I wanted Rafe Spall to fucking die!

nakho if you had seen me between the ages of 4 and 20 you would not have asked that question

have been diagnosed at 18 by a psychologist as aspergic, now I know you dispute that is a thing and I am not convinced myself, but I have a large number of tics, some based around the idea of my left side and others based around my hair touching the back of my neck, that act as residual physical manifestations of whatever weirdness - let's call it mild autism - that a slow, slow process of exposure to social grace & developing of empathy have whittled down. also I'm a maths pedant, also I would burst into uncontrollable anger all the fucking time over the most minor things, I could go on

xelab otm obv

I was diagnosed with aspergers quite young (maybe 8-10?), I disregarded it for a long time because I didn't see much similarity between myself and other aspergers youths, but recently I started thinking there might be something to it, so I got reassessed. They couldn't really tell me anything other than I might have a form of it that manifests in very subtle ways, so it was best to keep note of "mild aspergers" at the job centre.
One woman told me that she thought the word "aspergers" would not be used by professionals in 10-15 years; she also said tv/movie depictions of autism drove her nuts, even documentaries because they tend to focus on extreme types of autism, that doesn't indicate the immense variety of autistic types.

I really don't know what to think, sometimes I feel totally normal with more or less normal difficulties, but sometimes I feel like I have hardwired limitations. My math skills are horrendous and I just never seemed to get beyond primary school basics with it.

Like all the stuff asperger kids are supposed to be good at is the stuff I'm worst at.

The movie version of the autism spectrum really sucks a lot of shit, if you are not male, cute and gauche and brilliant then are you are part of the invisible morass of the unwanted disabled in their world. Clair Danes did a fine job of depicting someone with classic autism but the fact remains if she was plain looking it would never have been made and she was depicting someone on the remarkable genius end of the ASC spectrum. Ordinary existence for people on the ASC spectrum is not very hollywood, it involves a lot of discrimination, alienation & depression and more often than not bad endings that wouldn't befit some prettyboy-prick driven movie project.

i spent some time with a childhood friend of my gf at a bar a night or two back and she clued me in prior that he was on the extreme end of the spectrum. i met him in front of the bar and he before going in he delivered an agitated two minute monologue to no one in particular about the faulty ergonomics of the entryway, then spent most of the time at the crowded bar wincing painfully whenever there was noise nearby and reacting with OTT exasperation when he couldn't find a place to comfortably stand.
we had an hour long conversation that was almost painfully intense (the crux was that his sister was shot and killed by the cops a year and a half earlier) and exhausting both in what he required from me as a conversational partner and how very much I empathized personally with those needs. basically everything that was bothering him was bothering me, only i've established tactics to cope more internally. it was a real reminder how close i run alongside these issues and how vulnerable being around people who are just a bit (or a lot) more damaged than i am makes me feel. we had several moments of genuine connection and I'm happy we made that happen but i walked away very anxious and claustrophobic.
gf spends at least a few days a week working in classrooms with autistic students and some of the horror stories she relates are very depressing, less in terms of behavior and more about the long term prospects for a lot of the kids. as a social issue, it's gonna hit a new level of critical density in the next few decades and i don't think there's any real system in place or being put in place. one love to everyone on board who has to deal with this either personally or with a loved one, it's a helluva fight.

Why do you think it's going to "hit a new level of critical density"?

loads and loads of diagnosed kids aging out of the system with no social safety net in place whatsoever

highly recommended documentary about autism in the Hoboken NJ school system
http://www.netflix.com/Movie/70287268
http://www.metacritic.com/movie/best-kept-secret

I don't see how it's different than loads and loads of undiagnosed kids aging out of a system, or there being no system at all. I agree that autistics and their families should have services available and that we should determine what services are most effective, but that doesn't mean that the population is changing in a catastrophic way.

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

Best to you Chinaski

I have just received confirmation that my 22 yr old is getting another year of ehcp funding for college. That's a huge pressure release because it is essentially my only support network and the possibility of not having anything in place was hanging over me every day. And there is a longer term plan for a slow transition to his next destination, a daycare place that is apparently very good. It's got a good rep and transport is included and also it is the only place in the district with a challenging behaviour unit. His 1to1 tutor visited the place and said it is perfect for him. I did need some good news for once.

:)

Good to hear

he was causing mayhem a few months ago, he kept running into the horse enclosure to play with them. I was told because of the volume of safeguarding emergencies he was causing that it was unlikely he would be on the return list. I told them he was doing them a favour by stress-testing their safety protocols and exposing the weaknesses! Anyway, they got loads of extra funding for occupational therapists, psychologists etc to assist them with him. And since that lowpoint he has been a model student for months now and made remarkable progress. And now they actually want him back. Tbf on the staff, they always wanted him back it was the management calling the shots.

Fantastic news calz. Can EHCPs still run until age 25?

I think on paper they can run until 25 or is it 24? but in practise most LA's wont fund them that long because they argue that there comes a point where there is no further educational progress. It's bollox of course. Tutors I talk to say the average funding for 19+ students usually runs in 2/3 year blocks until ehcp is withdrawn. It is hard for them to make this case for Alex because there is too much evidence of progress witnessed by multiple professionals, but even that wouldn't guarantee the funding. It seems a bit arbitrary really. There is an appeals process if you don't agree with their decision, but you never find out until May/June when the term is nearly over. So I guess most parents/carers will be faced with decision of going into what is probably a lengthy appeals process that could stretch into the next college term without resolution or just give up on FE and look for social care options.

Arbitrary is exactly what it is

Glad to hear, calzino

That's great to hear, calzino.

We're in the process of getting one for our boy. He's 18 but has missed so much education; the council were bemused that his school/college hadn't sorted it out before.

it was made mercifully decision-free for me because there was no college within the council district that met his needs and the nearest one that did was exactly the one I wanted him to go to. In fact I'd previously lost an education tribunal appeal to get him into the school there, so was ultra-focussed on it. It was an amazing college but then covid happened, which fucked everything up!

Wrote a long post and lost it, looking for advice really. TL;DR - my 9yo's friend "Tom" likely has ASD, being assessed, they've been friends forever and we just deal with any challenging behaviours but recently he's been quite violent, daily, to his friends including my kid (trying to bite people, throwing him to the ground etc). I've said it's OK to say "I don't want to play with you when you hurt me" but he's scared of annoying him and inviting retaliation. His few friends do seem to be on eggshells. My kid is pulling back and deciding he's less of a friend which would be terrible for Tom if it continues. Just don't know how to deal with it, Tom seems unable to control the violent outbursts but also don't think grasps that people will dislike him for it. I'm good friends with his mum but basically I don't think she knows how to deal with it at all, and perhaps hasn't realised it's escalated so much recently.

I'm good friends with his mum but basically I don't think she knows how to deal with it at all, and perhaps hasn't realised it's escalated so much recently.

there is nothing that can prepare you for daily extreme challenging behaviour and as a parent/carer it can make you feel alienated, isolated, you might even have a few nervous breakdowns - it's a rough place to be. A good move might be for her to contact the local CAMHS (child & adolescent mental health services). I did this after struggling for years and should have done it much sooner. It's that trying to muddle through things and hope they will magically get better thing that I tried. I got a CAHMS nurse visiting my house and she had 3 decades of exp working with autistic children and adults and had seen it all before, which is a very important perspective for someone to share with you when you are in that shit lonely place! There is still advice and things she said from 8 years ago that I remember and she was spot on about everything. And she didn't tolerate any of my hopeful copium that he'd just grow out of it and all would be calm and good thereafter. Just to speak to someone who has seen it all before and can be calmly analytical about what you are dealing with and give good advice was a very important moment to me.

I'm trying not to do a long post because I'm bad at them and tend to become repetitive. But I do hope there is something helpful there for your friend.

Thanks - I know they are going through some diagnosis process and doing play therapy, but tbh I don't know how much hands-on advice they're getting. She is by nature a 'gentle parenting' type which is the opposite to me, ha, plus is exhausted so genuinely doesn't notice stuff because her attention is elsewhere. I'll ask her if anyone experienced is in regular contact with them/ visiting them. I worry as well that as they get older the one or two classmates that find it funny to wind him up will become more cruel or even physical back to him.

I keep hearing from various professionals that diagnosis is taking forever these days, this fucking country.

so i guess i should talk about this

yesterday i talked to my psych and she offered to drop the autism diagnosis from my record. she says RFK is building a registry of people with an autism diagnosis.

i took her up on her offer.

i don't really engage too much with what's going on in america, i'm not particularly informed on this stuff. i don't have the power to change it. nobody i know has the power to change it. learning about this stuff tends to just make me feel more hopeless. but since it came up, here's what i've heard.

what i'm hearing is that RFK put a guy named David Geier in charge of what RFK calls an "autism solution". And that Geier was practicing medicine without a license. That he was consciously misdiagnosing autistic children with "precocious puberty syndrome" in order to give them high doses of Lupron. now, Lupron is a great drug when used for blocking puberty in trans children, _at certain doses_. these children weren't being given it as part of gender-affirming care (lol like anybody in this administration would actually provide gender-affirming care), and they were giving it _well in excess_ of the dosages used as a "puberty blocker". apparently - i didn't know this until today - "chemical castration" refers to a _much higher dosage_, at least with respect to Lupron.

I'm familiar with the medical history of autism. I'm familiar with why Hans Asperger, under the Nazi regime, came up with the diagnosis of "Asperger Syndrome". It was in order to give autistic people a diagnosis that would exempt them from being killed by the Aktion T4 program, which was a program where the Nazis killed a large number of people who were deemed to be "genetically unfit". This history is in fact why Asperger Syndrome is no longer differentiated from Autism Spectrum Disorder under the DSM.

You know where this is going. It is literally too awful for me to put into words. I'm at the limit of what I can actually say. I wish this wasn't something that I had to deal with, in practical terms.

There are a lot of things happening in America right now. It's hard to keep track of all of them. Some of the things happening in America are extremely bad. If you are in America and have an autistic child, or children... I'm sorry. I'm so sorry.

sorry, a purely carer-centric post here

normally this would be my first week of the 6-8 week summer holiday block where I don't get any help at all. My son has left education and has been transitioned into a day care package. This period normally crushes me because it's impossible to stay on top of household work duties and organise daily stimulating activities, no matter how much I try to organise things it all just starts falling apart after a few weeks and I feel like a sad failure, and am usually stretched to breaking point by the time of the new college term.

Now instead of me getting stressed out this week, he gets picked up every morning by these two very nice young dudes and they either take him for activities in the community or back to the day care hq where he has his own space and they do various arts + crafts activities and baking and there are sensory, aqua therapy rooms etc.. Last week he has been cycling at a running track, been for walks on Halifax moorland, to a trampoline arena, to some kind of bouncy castle warehouse and to a Pizza Hut. In some ways it's not quite the bespoke package he had under his EHCP, but fuck me, it's miles better than what I was expecting.

that’s great to hear, sounds like a lot of fun for him and a nice reprieve for yourself!

Yeah sounds so good for you both and positive news amid the torrent of shite, thanks for sharing it.

Genuinely happy for you and your son Calzino.

That's so good to hear, Calz. All power to you both.

Hey that sounds good! How long does it go on for?

as far as I know once a care package has been approved, it runs indefinitely or perhaps until the local authority is bankrupted by further difficult decisions by our psychotic wikipedia chancellor. He has to make some weekly financial contributions from his PIP based on him requiring a 2 on 1 setup for the first few weeks. Which will be lower when he is switched to 1 on 1.

I was anxious at first because he had a very bumpy start at his last college and for the first week would refuse to enter the building and would stand at the front entrance for hours every day. No such issues this time and he has seamlessly switched to a new routine.

Last month I was arguing (needlessly, in retrospect) he needed more transition visits than the one day we only had the time for, or things might start off badly. It took so much time for the management team that sign off on care packages to get it approved. He only had a fortnight of term time by the time it was sorted. His last Friday at college was was quite a sad and emotional day because he been there 4 years and got very close with some of the staff, but it was also bittersweet happy + positive because so much real progress had been achieved. And it was a relief that this care package started on the Monday, leaving no time to feel too sad about things that have come to an end and some immediate continuity.

what further damage is this shitstain of an administration going to cause today?