What can you tell me about Autism?

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.

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 If anything autistic people are known for being exceptionally quiet and withdrawn.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...

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.)

Electro and Asperger's syndrome

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.

(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'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.

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.

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.

"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

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.

*****************************************************************
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

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).

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.

i'm aligning myself less with alarmists suggesting GMOs or vaccines are causing autism and more with those allowing for a broader definition, especially when it benefits an undersupported group of parents and sufferers. Awareness is rising, the diagnostic tools are being applied much more rigorously, the symptoms considered as qualifiers are more widely defined. it's not gonna be politically expedient much longer (i hope) for administrations to ignore a growing constituency. so i'll walk that back to a "new level of critical density within the culture" but i would hope, given the context of that post, you can understand where a more emotional phrasing comes from.

Autistic UK believes in the central principle of the Madrid Declaration; “nothing about disabled people without disabled people” and seeks to ensure that autistic voices are heard.

It seeks to include as broad a range of autistic people as possible.

It seeks to challenge the consensus view of the meaning of the word “autism”.

It seeks to encourage the emergence of a consensus view on the nature of the autistic experience within the autistic population of the UK.

Autistic UK believes autism is not something a person “has” any more than a person “has Englishness” or “has heterosexuality”.

It does not seek to answer the question, “What is autism?”; it seeks to ask the question, “What does it mean to be autistic?”

It applies the social model of disability to autism arguing that autistic people are disadvantaged because society disadvantages them, not because they “are autistic”.

It challenges the various myths and falsehoods regularly propogated concerning autism.

It insists that autistic people must be invited into the discourse regarding the nature of autism and what it means to be autistic.

It challenges

the Triad of Impairments as a meaningful summary of autistic characteristics
the terms “high-functioning autism” and “low-functioning autism”
the concept of the “autistic spectrum”
the claims that autistic people “lack empathy”, are “emotionally illiterate”, are socially illiterate, lack a sense of humour, lack imagination, lack creativity
the claim the autism is “predominantly a male condition”

Autistic UK promotes the concept that being autistic involves difference rather than deficit.

Autistic UK operates on the principle of inclusivity.

The autistic population is an extremely heterogeneous group.

It is probable that the only feature common to those people diagnosed autistic is the fact that they are all diagnosed autistic.
It argues that all those interested in addressing the various questions surrounding the experience of being autistic ought to be involved in that conversation (including those whose views are sharply divergent with those of Autistic UK)

Autistic UK recognises that many autistic people are struggle to represent themselves and some are incapable of representing themselves

Some can represent themselves without support
Some would benefit from support
Some need support
Some need a high level of highly skilled support
Some, even with support, will be unable to represent themselves

This last group, although they might be able to express preference and even participate in, for example, designing their own “care package”, nonetheless will struggle to engage with a “political” or “strategic” agenda (such as designing local services).

We are aware that in some situations the most appropriate people to speak on behalf of these people are their parents or other family members.

In other situations it might be more appropriate for these people to be “represented” through the involvement of more able autistic people.

We encourage family carers to represent themselves as carers.

Some autistic people are family carers of autistic people too.

Non-verbal or uncommunicative autistic people should always be given “the benefit of the doubt” in terms of IQ.

The definition of a “person with a learning disability” in British legislation follows that of the World Health Organisation; a person with an IQ of 70 or below.

Autistic UK challenges the assumption that non-verbal or otherwise seemingly “low-functioning” autistic people must be learning disabled.

If a person has little or no verbal communication then administering an IQ test is problematical and determining the IQ of such people is not a straightforward matter.

Often no attempt is made to determine the IQ of such people.

Without formal IQ testing the term “learning disabled” ought not to be applied to anyone.

Tools with an inbuilt language bias such as the Wechsler Scales (Wechsler Intelligence Scale for Children or WISC and the Wechsler Adult Intelligence Scale or WAIS) should not be relied upon with autistic people non-verbal or otherwise and whatever their apparent IQ.

Tools such as the Raven Matrices should also be used in order to obtain an accurate IQ score and to gain a better understanding of how difficulties with language might be affecting the individual.

One of the sad things is, when someone is what you could facetiously call "non-verbal", even the nicest, well-meaning people tend make lazy assumptions and tend to talk to them like they don't have their own complex internal world and lack the cognitive ability to receive, just because they have difficulties transmitting.

It isn't all doom and gloom, earlier today I signed a consent form for him to go on a group trip to Pizza Hut before the easter break as part of his curriculum. It isn't as frivolous as it sounds and there is an emphasis on teaching independence skills. But fuck it, it sure sounds like fun for a school day!

what can you all tell me about raising a child on the autism spectrum? my older son was diagnosed a month ago.

Do you live in the UK? If so you might want to make contact with the NAS or other organisation for advice and experience. I worked within adult services for an autism charity for a while. One thing for certain is that autism or autistic spectrum disorders as they were under the DSM4 can manifest quite differently in different people / children. One person or one family's experience will differ from another's. Services in different regions will vary also.

yea we are in the US, we've been getting early intervention services for speech and developmental delays already (he's 2.5 years old) and we are working with an agency right now to expand more services for ASD, services seem good right now but we are a little worried about what's available when he starts elementary school in a few years, the public school system in boston is gargantuan and a horrible maze and we haven't heard positive things from other parents of kids with ASD

what state do you live in?

MA

lemme talk to my gal and will come back if she has any recommendations. on thread or email is best for you?

thread is fine, thank you forks!

will do; can't promise I have too much to offer but (as i've discussed) my gf, who is originally from the boston area, works with autistic kids and it's a point of focus for her personal and professional life... so she may be able to say a thing or two to help.

gf recommends these folks as resources:
http://www.vsamass.org/
https://www.autismspeaks.org/

she has a few pals in MA who are special ed teachers and is reaching out to see if they have any guidance.

thanking you forks, yes autismspeaks is a treasure trove of good information and i wasn't previously aware of vsamass

Just FYI re: Autism Speaks, there are some concerns with the organization. Summary: https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

Marcos, my kid Alex is a 13 yr old with a diagnosis of classic autism and various other things including epilepsy, onset Tourette's. Firstly I would say two and a half yrs sounds a bit early for a conclusive diagnosis, some kids are late with speech + language and display ASC type behaviour without being on the spectrum.

Because Alex was non-verbal and extremely non-compliant when we sent him to Reception (probably called Nursery School in the US) the fucking arseholes sent these Parenting Skills goons to our house, because obviously we were appalling abusive parents etc. The next step was they would only allow him to attend Reception for an hour and one of us had to be present, we were doing a job-share at the time so it was possible, but it was fucking contemptuous behaviour by them and they would get fucked for disablism these days.

Anyways after this I went F/T and we fucked off the school system for eight years and my partner home educated him and it worked out fine until after various failures (attempts to get him into a NAS private school, a free school disaster) one of our local state schools transformed from a general special school into a whole autism school where he has been for a year now. My partner is too ill to home educate so it has been a god send. Sorry if I am rambling and this is a bit too UK-centric but this my experience which is rather mired in the last decade, would like to think things have improved since then.

thanks xelab

yea it is quite early still

For anyone interested in what's going on in autism research: a researcher who has autism, M1chelle Daws0n, has a great Twitter feed (@autismcrisis). She uses it to dissect studies as they come out, giving shout-outs to carefully designed research and pointing out cases where research with autistic people doesn't meet the methodological standards of research on neurotypical people.

hey marcos, gf reached out to an old teacher friend in MA and here's her response... some of this may be super obvious but I'm passing along in toto

Early Intervention is based on geographic location. There is an office covering all of Massachusetts so its just a matter of finding which office serves their region. They can find that information here:
http://www.mass.gov/eohhs/gov/departments/dph/programs/family-health/early-intervention/family-info/about-ei.html
They should refer their son and schedule an appointment ( they have to get started sooner than later if he’s almost 3). The intake person will explain eligibility to them and also describe how services are delivered. When the child already has a diagnosis of autism it is easier to get started with the support services specifically related to the diagnosis (ABA etc).

Marcos, I have a son with pretty serious developmental delays - it's a mélange of things but the short version is that he's 4 and does not talk.

Speech/language delay may or may not be autism. Apraxia of speech is, for convenience, sometimes placed on the autism spectrum but it's not always appropriate.

Early intervention for us was a godsend. We're in Virginia; I don't know how different it is elsewhere, but we've been completely blown away by how many resources there are out there, if you just know who to ask and how to ask. E.g., there was a specific person whose JOB was to make sure we got the therapists we needed, that the therapists shared notes and worked together, and that their appointments were convenient for us.

When my son aged out of the early intervention program, they transitioned him smoothly to the county school system, where again, the support is lavish. Free all-day special ed preschool? Door-to-door bus? In-house speech, physical, and occupational therapists each seeing him twice each? All for free. (Or, at least, all included in what we get for our taxes.)

Best of luck to you and to your small person.

Also, what xelab said. Sure, 2.5 is young for diagnosis, but overall I think it's a GOOD thing that your health care providers are on the lookout for autism - because catching stuff early can make a huge difference. If it turns out that it's a premature diagnosis, nothing you're doing for him now will be harmful - it's all good. Some boys do just show up late to the developmental party, and are fine once they get going - but better to be on the safe side.

You may wish to consider http://www.apraxia-kids.org/stay-connected/apraxia-kids-email-listserv/ in case what you're dealing with is apraxia that is not specifically autism.

In our specific case, about the only things we know for sure is that our son is not autistic and not deaf. We have near-daily heartaches over what he's not doing, and it's a big psychic blow to realize your kid is not on the same trajectory as kids generally are. Other four-year-olds are deciding what kind of dinosaur they want to be when they grow up, and yeah. We're missing out on some of that. But he's so sweet and so cheerful; the best thing we can do is focus on where he is now and who he is now.

thanks YMP! and thanks forks too for your gf's input.

nice to get that confirmation about early intervention. J's been in it since last july, it's been amazing and we've been consistently astonished that we are getting these incredible services for free. we've been so impressed by every person we've met. we have a general developmental clinician 1x a week, speech therapist 1x a week, OT 2x a month, playgroup 2x a week, it is awesome. right now we are working with an agency to get the additional autism-focused services (early start denver model).

i also found out that my health insurance covers ABA from ages 3-6, so that is such a relief.

very interesting YMP about apraxia. we know a few kids from J's early intervention playgroup who present with that. J is actually SUPER chatty, mostly the diagnosis has centered around limited skills in social communication and interaction and he presents with extremely restricted interests that get very obsessive and intense - trucks, cars, garbage bins - lining up toys, getting very anxious and upset with things are moved around in ways he doesn't want, some echolalia and repetitive use of languages and certain phrases, some very strict adherence to certain repetitive routines and behaviors. he is such a cheerful and motivated and intelligent kid though and my wife and i, despite worrying about the diagnosis and how it will play out over the years, have a pretty wonderful relationship with him.

i TOTALLY get this:

We have near-daily heartaches over what he's not doing, and it's a big psychic blow to realize your kid is not on the same trajectory as kids generally are. Other four-year-olds are deciding what kind of dinosaur they want to be when they grow up, and yeah. We're missing out on some of that. But he's so sweet and so cheerful; the best thing we can do is focus on where he is now and who he is now.

the timing has been crazy, too, we just had our second baby a week after getting the diagnosis and it's just been really overwhelming and intense when he have this other new baby to care for and also research and learn about autism and plan out all these services.

and i am feeling really overwhelmed with how politicized debates about autism are, too, so much misinformation and quackery out there from so many people and yet even the mainstream organizations, research, and therapies get called out and criticized all the time too

"extremely restricted interests that get very obsessive and intense"

In other words, a wee future ILXor?

haha

hey just want to say i appreciate y'all on this thread & reading this conversation
i am not a parent or an expert in any way but i do coteach special ed inclusion classes & i really love my stunts w/autism, and the parapros who work in class w/them
i can't imagine how draining all the politics are but the one thing i think is interesting is they have had some laudable, noteworthy effects. this from andrew solomon's _far from the tree_ chapter on autism: "Not since the height of the AIDS crisis has there been such an aggressive campaign for funding and research, with scores of organizations (many of them with snappy acronymic titles such as SafeMinds) pursuing theories of causality, the development of behavioral treatments, appropriate schooling, disability benefits, support services, and supervised housing. Cure Autism Now, a parent group, pushed Congress to pass the 2006 Combating Autism Act, which mandated a billion dollars of spending in five years, for research on autism and related disorders."

"i am not a parent or an expert in any way but i do coteach special ed inclusion classes"

In my experience people like you have been the only other people who have made any positive impact on Alex's life, whoever the experts are they have done fuck all. Whereas he has developed very close and important relationships with his teachers and classroom assistants.

These people that talk about "cure" need to be shut down.

yeah I know I am parroting Temple Grandin here but I really do love & appreciate the different type of thinking they bring to class & class discussions

and their parents, too, damn! parenting is a 24/7 job but these folks on the real...anyone who can get their kid to do homework after school is a god in my mind, let along homework, and ot, and hippotherapy, and tutoring, and art therapy, and speech therapy...

also sorry for the v undortunate typo upthread, i obv meant 'students' not 'stunts' :/

complicated story but most important note imo is

"What scared us in the Bay Area is that there are thousands of kids just like this one," said Jill Escher, president of the board of the Autism Society of the San Francisco Bay Area. "Imagine if lawsuits like this were allowed to proliferate on such allegations. This could happen to all autism families at the drop of a hat. They would not know where to go."

i wdn't worry, no civilized legal system would allow a malicious case like this to oh wait Superior Court judge you say??

Sometimes you see signs that we are living in more enlightened times regarding attitudes and legislation towards people with ASC's, and then you read shit like this :(

A bunch of privileged, self-important people who think they should be able to live without the slightest discomfort or inconvenience.

ugh what fucking assholes, i feel awful for that family

A bunch of privileged, self-important people who think they should be able to live without the slightest discomfort or inconvenience.

― Aimless, Sunday, September 20, 2015 12:53 PM (Yesterday) Bookmark Flag Post Permalink

http://www.mercurynews.com/health/ci_28839003/sunnyvale-neighbors-say-autistic-boys-parents-ignored-their

By August 2013, when the Flowers moved to a rental house on the court with their two young children, they told their children that the boy was "special, and we need to understand him," even after the boy slapped their young daughter.

But in October, when he said the boy attacked their young son on his fourth birthday -- pulling his hair, shaking his head back and forth, kicking him on his back repeatedly -- Robert Flowers reluctantly called the police, because he said he wanted a paper trail to be established in case the attacks continued.

"I didn't want to do it, because I knew I would look like the bad guy," said Flowers, who moved out of the rental house with his family last month.

"We're not upset about him being autistic," he clarified. "We are concerned and upset about his violence (toward) our children."

After yet one more attack in early 2014, Santhanam said, he and his wife asked Gopal and Agrawal to meet with them to talk about the problems and create a plan that would keep the children on the block safe. He said at one point, Gopal and Agrawal suggested their son could play outside on either the odd or even days of the week, and the other children could play on the opposite days.

But the boy's parents, Santhanam said, ultimately didn't commit to anything.

The two couples filed their lawsuit in June 2014, asking the court for a preliminary injunction against the family to ensure their son does not strike, assault or batter anyone in the neighborhood or their personal property. One month later, the judge agreed.

I feel awful for the family too, and I think a nuisance lawsuit is probably a terrible way to handle this, and would set a terrible precedent. But if it were my kids getting violently attacked I'd be pretty upset.

i think these people are extraordinarily shitty for pursuing a lawsuit against this family. flowers said "this is not about autism, this is about public safety." sorry asshole, this is definitely about autism. you cannot detach that detail from this case.

also i am curious about the circumstances under which the boy with autism was "attacking" other children -- were they giving him enough space? how were they playing together? did he just walk into their yard and attack them? i doubt the latter tbh though obviously i don't know. my son is not aggressive in the slightest but when he feels threatened or has his personal space invaded he gets pretty intense.

Are other people responsible for knowing in advance what might threaten your son, particularly people you don't know? This is a super unpleasant situation for everyone involved, and there seems to be a little bit of a taboo around the connection between autism and violence. It's hard to talk about the connection without appearing to demonize autistic people, but self- and other-harming behaviors are real and can cause problems in many autistic children and adults.

xp idk man, but the kid attacked was four, so how do you teach a four year old to give another child enough space?

Is your son autistic Marcos? Feel free to just not respond if you don't want to get into it. My wife has had a lot of autistic students, and obviously there are a huge spectrum of different behaviors, but some of them just need one-on-one paras to be with them at all times in order to prevent that kind of thing from happening, and it is a safety issue for other kids in the class.

Fourth birthday = implies they were together at the bday party

Xp

xp ya my 3 year old has autism. he is pretty high-functioning and we are supervising him 100% of the time basically but tbh more his own safety/well-being, like i said he is not aggressive at all, we are more worried about other kids getting up his space and overwhelming him and causing a tantrum/outburst/sensory overload thing.

not saying the parents aren't at fault, idk the situation, but calling the cops and suing them is complete bullshit imo, and the attempt to avoid the complexity of suing a family with an autistic child by saying this is not about autism makes me think they are pretty shitty people. it is about public safety, your child's well-being, sure, but it IS also about autism.

we don't know all the circumstances and i don't live in the US but i can't imagine any course of events that leads to this kind of legal action that doesn't involve the plaintiff being a wanker

What about about the neurotypical kids that are violent? Where I live they outnumber the kids with autism who are violent by about 999/2 and cause all the problems, in fact there are two ASC kids on my estate and they pretty much never go anywhere unaccompanied for their own safety. Some of the same ignorant fear-mongering coming from the precious entitled suburban fucks itt that was highlighted in the original link.

yea i am definitely more worried about kids fucking w/ my son then vice-versa, he is especially vulnerable

this case only furthers the notion that people w/ autism are the problem rather than how others treat people w/ autism

I hope no one on this thread ever has to know about this, but in the US, a civil suit against the parents is vastly more humane than getting getting the criminal justice system or protective services involved.

but is there no intermediary third-party mediation option? it seems like a helluva way to escalate

one of the articles says that third-party mediation didn't work.

and that the parents who are being sued were not watching their child while he was out playing, at some of the times of the alleged attacks; neither was the child's sitter.

It's always dangerous to wade into these things on the internet because it's a little like that Maine diner toddler story that was going around -- a lot of one person's word against another, facts always incomplete, people interpreting things how they want etc. But I'm not ready to join the chorus against the parents filing the suit after reading that their small kids were physically attacked multiple times, which has nothing to do with whether it's the autistic boy's "fault" or not.

Well you could always start some pressure group for disability free neighbourhoods, one in which your precious fucking children can grow up in an environment that is entirely free of child on child violence.

oh shut up

Well if you are condoning a neighbourhood witch-hunt against a disabled kid just be a fucking honest bigot.

whooooa dial it down jfc

shut the fuck up, asshole

self-righteous internet posting pos

Xelab has one setting ime

it's weird how xelab pretends to give a shit about people being treated with dignity and then lashes out at people, having no idea about or interest in the lived experiences of the people he's talking to

like, just be a fucking honest aggro dick instead of cloaking your need to be aggro with people behind this transparently false veil of concern for people who need help

this whole case just bums me the fuck out

We don't know all the circumstances .... but i can't imagine any course of events that leads to this kind of legal action that doesn't involve the plaintiff being a wanker

― OshoKosho B'Gosho (Noodle Vague), Monday, September 21, 2015 12:51 PM (1 hour ago) Bookmark Flag Post Permalink

otm

it just bums me out

i understand their concern for their kids

but their neighbor with autism is not a fucking pitbull

just totally bums me out, their action smells like shit even if they don't think it does

lol did i say it bums me out enough times

Yeah i'm not gonna judge here cuz who knows the actual facts here, it's just a bummer all around

Here, i say

again yeah i understand about the unknown facts, but the feelings this arouses are coloured by the context of prejudice and misunderstanding habitually faced by autistic people and their families - and i guess media coverage of this story is only likely to continue that context precisely because it doesn't (can't?) explore the complexities of the situation

it bums me out too, and as I said above I think nuisance lawsuits sound like a horrifying way to handle this issue and a bad precedent. I only meant that it's hard to get a full picture of what any of the parents in the story have actually gone through from a couple of news articles, so I'm not rushing to assume these parents just want to live in a disability-free zone.

also once I saw a thing about a toddler getting beat up that just emotionally murked up the situation for me and made it harder for me to assume anything about the parents

there are actions not born of individual discrimination that serve to further a climate of discrimination tho

Listen here Chaki, I have a 13 year old with autism and have been through the full fucking wringer on the parent of disabled kid experience - so go shooting at the hip to someone else you interloping dick-head. I am going retire from this thread because I get too angry when people start defending acts of disablism and am a piss poor debater.

yeesh, well sorry I called you an asshole then, hugs to you if you're still looking at the thread

Don't worry I didn't exactly approach the "debate" in the best manner:P

Glad everybody's hugging now. Just dropping in to point out to xelab that Joan Crawford Loves Chachi is not the same person who used to post as Chaki, who now posts under the name kurt schwitterz.

yeah hey fuck you man jeeze lol

i'm gonna need a diagram

I just spent 3 hours trying to negotiate with my kid to let me administer a nasal spray flu-vaccine on him. He requires general anaesthetic for any dental work and is not keen on anything near his eyes/ears/nose/mouth and will punch and kick with impunity if you are persistently intrusive, as the nurse in the clinic found out when she sent me home with the vaccine. I got there in the end but fucking hell ... ^^;

sorry xelab, sounds rough. my three old hasn't been to the dentist yet, we are kind of terrified, we definitely need to get some recommendations from other families with ASD kids

Look up duraphat 2800 ppm fluoride toothpaste for starters. Luckily I can get it on NHS prescription and it might be a bit costly over there, but worth the money imo.

ah high flouride for extra cavity protection? to avoid dentist trips i assume, makes sense

I go to a specialist NHS dentist and she assures me that it strengthens his teeth against decay, for the last 18 months he has used it his teeth are in impeccable condition. He previously only had minor problems with his first teeth, but his pain management skills are not the best - as I am sure you can imagine.

http://www.bbc.co.uk/news/uk-england-oxfordshire-34548638

I had a lengthy post on this and ended up deleting it because it got out of hand.

had some random thoughts about the way BBC news covered this case too but probably not worth hashing out

the margins are getting broader and broader and the UK gov does not give a fuck about anybody who's pushed there

I worry about the way things are going, as in decent local authority funded disabled facilities getting the life strangled out of them by this hateful government and as they say once they are gone, then they are gone...

I was offered funding for a private sector facility recently for Alex to have some independence and "fun" time on a fortnightly basis. We visited the place and it was small, oppressively institutional and badly staffed, it actually reminded me of one of them Ceausescu era asylums. He was pulling my sleeve to gtfo of there in minutes, it was basically a room full of bored + depressed disabled people so I declined and in blunt terms told them that their operation doesn't belong in a first world country. The sad thing is that companies like these seem to be thriving by paying the minimum wage and treating disabled people like "storage", the Tories love that shit. Although the Connor S tragedy seems to be a case of NHS Trust negligence, I can imagine a lot of more these needless deaths to come will be purely cuts related.

there are good people and good organizations out there dude, stay strong and don't let the bastards grind y'all down

https://juststimming.wordpress.com/2011/10/05/quiet-hands/

i would recommend the HBO documentary How To Dance in Ohio as a worthwhile watch and the first film I've seen that explores the challenges inner life of high functioning teen to young adult women with autism from their own perspective.
http://www.howtodanceinohio.com/

http://www.theguardian.com/books/2015/aug/23/neurotribes-legacy-autism-steve-silberman-book-review-saskia-baron

My partner has tasked me to get that doc but I can't find it on the torrentz yet and she is currently reading this ^^^, it gets Baron-Cohen approval so i'd guess it will be good stuff.

xp

that is a brilliant piece as well NV, when ABA is little more than GBH....

Has Baron-Cohen rolled back on the heavy-duty neurosexism and the toxic transphobia yet?

Because I am, frankly, desperate for good, sensitive and understanding experiences and coping strategies of people with female-assigned bodies and Aspergers brains, but Baron-Cohen has repeatedly come out with such "wow... NO" stuff from his mouth that a recommendation from him is pretty much like erecting a wall of kryptonite warning me away from a thing.

(My Dad did tell me to read it, though, so...)

I wouldn't let your dislike of Baron-Cohen put you off, from what my partner says it is an essential read with a lot interesting historical stuff about about attitudes/mistreatment of ASC people.

It's not a "dislike" of Baron-Cohen, it's a distrust. When someone comes out repeatedly with stuff that is demonstrably false, to downright dangerous, it doesn't affect one's "liking" of them so much as it casts a suspicion over the veracity or usefulness of the rest of their statements.

Fair enough B. My partner speaks highly of him and has all his books which I have never read. To an uneducated schmuck like me he is the *important* professor of autism studies guy she often quotes, I am guilty of unquestionably accepting someone's credentials without reading them. Well I did start Mindblindness but was bored rigid and put it down for something more to my interests.

Well, I guess it's because the first place I encountered him was, whenever anyone was hosting a debate about "Brain Gender" (and spurious topics attached to Neurosexism), he was THE Go-To Guy to stand up and say "Brains Are Totally Gendered!!!" and talk about how there are delicate pink ladybrains and true-blue EXTREME MALE BRAINS. And I watched while Lady Scientists and Lady Linguistics Professors and Lady Experts one after another, demolished his brain-gender arguments, and sorry, nice theory, bro, but the science and the facts and the research and the meta-studies just don't back you up.

And he would stand up and protest BUT MY THEORY OF EXTREME MALE BRAIN HELPS SO MANY AUTISTIC BOYS!!!! You are trying to TAKE AWAY a thing that helps men!!!!

Never mind how the theory of EXTREME MALE BRAIN!!!! is actually highly detrimental to autistic spectrum women and girls, and I am 99.999% certain that it was a factor in why it took me so long to be diagnosed; hey, I was even told, the first time I took a test that put me off the scale on Aspergers Traits, "Don't be silly, you can't have that, you're a girl."

Things I know from reading a shit-ton of books on brain development (and neurosexism) when I went through a little obsession with it: there are *multiple* intelligences in the human brain. There is maths-systems-logic intelligence. There is verbal intelligence. There is musical intelligence. There is "I can rotate 3-dimensional objects in my mind" intelligence. There is emotional and social intelligence. (There are others I've forgotten.) There is no gendering to these intelligences! Most people of all genders have some functioning in all these different types of intelligence, to scales of varying ability that differ with individuals.

Yes, it is really important to recognise that Autistic Spectrum Disorders (from what reading and research I've done, and been told by my therapist) affect a specific subset - it is the impairment of the Emotional and Social Intelligence set of functions that renders a person autistic. There may be impairments of other intelligences or other learning disabilities, but it's the specific Social Intelligence impairment* that brings the diagnosis of autistic spectrum. There is a subset of people who have serious impairments of the social intelligence functioning combined with above average maths-systems-logic intelligence. That is the specific set of traits that's grouped together as Aspergers. This is good science! This is helpful stuff!

*one of the best things I've ever read on these specific impairments and how they manifest is this: http://www.lifeonthespectrum.net/blog/?page_id=762

But when dude starts calling the social intelligence "lady-brain" and the maths-systems-logic kind of intelligence MALE BRAIN (TO THE EXTREME!!!!), that is not science. That is just stereotypes and sexism. And this is the fundamental BASIS of his whole theory! It's not a little added-on oops, ignore the weird opinions coming from an otherwise sensible person, like Pythagorus and weird thing about beans. It is foundation-level RONG-ness. Social != female! Logic != male! If this is your basement, your house will collapse.

But where Baron-Cohen jets off from eye-rolly Daily Mail style neurosexism into stratospheric level WOW NOT OK levels of ~PROBLEMATIC~ that would have him banned from every university in the country if he were, say, a feminist author rather than a respected scientist is:

He has ~opinions~ on Trans Men. Trans Men, says Baron-Cohen, are not men. They are autistic women. (I'm not sure how this works with the EXTREME MALE BRAIN and all, like, how can ~male brains~ be inside ~actual women~?) They are autistic women who have AUTISTIC FIXATIONS on masculinity, so therefore believe, VERY STRONGLY, that they are men! But of course they are not really Trans Men, they are actually delusional little autistic weirdoes who need Baron-Cohen's help. Right.

Like, how the fuck do you even parse something like that? Like, help me out, because I am aware that I have a Asperger's brain that just grinds to a halt when confronted with non-logic of this order. Male brains. Autism means ~Male Brains~. So how does a ~Male Brain~ get inside a woman? How? What? Either brains don't actually have a gender, or else, surely... if there really *IS* such a thing as ~brain gender~ as distinct from what I was talking about above, (with there being differing types of intelligences, and there *IS* such a thing as a ~Male Brain~) then surely a person with a Male Brain in their head would be a Man, and even in this bizarro-world, Trans Men are still correct, and they are in point of fact, still men. (Never mind that there are autistic women who are not trans, and trans men who are not autistic, which contradicts this little theory!) It's just staggering non-logic which veers from the territory of "just wrong" to "really fucking dangerous."

Because that whole argument of "trans people are not the gender they say they are" - when that logic appears in the mouths of Germaine Greer or Julie Bindel, there is debate and push-back and protest and people explaining why this is dangerous and wrong. But when it comes from the Great Male Scientist, it's... it's... ... ??? ?????????

There *is* a nugget of a thing under all that wrongness. It is totally true, that Apergers women often struggle with gender and the performance of it. Might that just be, because Gender is another of those confusing and perplexing non-logical social interaction unwritten-rules set of social conventions of the sort that ALL people with Aspergers struggle with? All people with Asperger's struggle with social conventions; the performance of Female Gender is a really bizarre set of social conventions; therefore women with Aspergers often don't "Do" gender very well. Isn't that a more ~LOGICAL~ conclusion than that Trans Men Are... Unicorns?

Sorry this is much longer than I intended (isn't everything I write on ILX?) But I find it really, really difficult, when I'm trying to look for useful or helpful information on this subject, but it seems so much of what ends up in the media, especially in this country, gets filtered through the mouth of this guy who, for me, needs a giant flaming bullshit detector before I will go anywhere near anything he says, and this is why.

Banging on at totally un-called-for length... about the manifestations of Asperger's.

I mean, I am into self-parody territory at this point, I am well aware.

Well that is a very comprehensive post B and makes me guilty about how poor I am at expressing my own internal shit. I can recall Andrea quoting some of that Male-brain stuff to me and I was nodding along without even engaging, but I lazily surmised B-Cohen was some kind of force for good. She is not evil or bigoted but is susceptible to ropey or cultist b/s sometimes. Years ago I had massive arguments when she went to this Son Rise Foundation meeting and was on the verge of donating money we could ill afford to these fucking hucksters who CURE autism. She is afflicted with a rare form of MS that is aggressively attacking her brain and motor functions and she is a shadow of the person she was a decade ago. Not really relevant to this thread but just trying to illuminate why someone's ability to make nuanced judgement can be affected by illness. Anyway that was a brilliant post B and I will c+p it to Andrea.

There *is* a nugget of a thing under all that wrongness. It is totally true, that Apergers women often struggle with gender and the performance of it. Might that just be, because Gender is another of those confusing and perplexing non-logical social interaction unwritten-rules set of social conventions of the sort that ALL people with Aspergers struggle with? All people with Asperger's struggle with social conventions; the performance of Female Gender is a really bizarre set of social conventions; therefore women with Aspergers often don't "Do" gender very well.

this is a really interesting insight!

No, this stuff is believable, because it's a nugget of truth wrapped up in stereotypes that are really, really prevalent! (Which is why I think it's important to try to counter it.) And then wrap that up and have it delivered by reassuring Big Science Expert.

When dealing with something so scary and disorienting happening to your kid, if someone offers some hope and an answer, of course you're going to try to take it! Even if one isn't dealing with a disease which is sapping one's own ability to function. (I mean, that in itself is just... so rough. I'm so sad for her, not angry.)

But yeah. Important to separate the spurious from the helpful because there is so much spurious out there.

the "male brain" is a horrible concept that SBC absolutely shd've disowned by now

fwiw I haven't read the book but I've read a few articles in which Silberman says that a) autism in women is underdiagnosed and more research should be funded and b) autistic people having no empathy is a myth, to pick two points contrary to Baron-Cohen opinions I remember being annoyed by

tbh I'm not sure that the emphasis on logic/systematisation is absolutely 100% helpful either. that's another subject and one I probably shouldn't get to have an opinion on, but here goes

just bcz: are we missing people who don't match that? are we doing a disservice to those who are diagnosed who might have other stronger skills but well-meaning adults keep reassuring them that logic is AS's necessary compensatory superpower?* is the stereotype doing a disservice to logical systematising non-ASD people (though, sure, tiny violin time perhaps)? and again, it's gendered: how might the whole men-be-logical/women-be-emotional dichotomy affect how women self-report their "systematising quotient", etc?

(* I have worked with a young autistic guy, diagnosed I suspect at an early age, who could not grasp the difference between AND and OR but who was convinced he should be a programmer because he had "a very logical mind". I felt sorry for him and very much hope he has found a more suitable career path tbh)

and also autistic spectrum disorders have a lot of overlap/comorbidity with disorders like ADHD and dyspraxia, which in my experience of having some symptoms of both/no diagnosis of either (so apologies if the following offends or is bullshit) can very much impede my personal logical and systematising abilities

afaict those comorbidities and ASD sensory issues also suggest another possible reason for autistic women tending not to be super-feminine: as a possible dyspraxic I totally don't do dressing up nice, doing my hair, wearing makeup because on a very basic level I don't get what finished effect I should be aiming for, don't get how to go about putting steps together to achieve that finished effect, and am absolutely too clumsy to get the steps right, plus I wear loose-fitting everything-covering clothes and plain soft textures for possibly sensory reasons, etc

^ all of the above stuff I'm not really qualified to talk about but it's interesting to me, sorry if presumptuous/clueless

As far as I remember, the scales B-C uses to measure 'systemizing' tap both ability and 'drive', whatever that means. I don't think he has ever satisfactorily defined systemizing, and certainly didn't explain why it should be on the opposite end of a continuum with empathy.

OK, I have just d/l the Silberman book because on that description it seems untainted with SBC BS. Also my Dad knows him and says he is a Very Smart Bloke so I'll give it a try. I just didn't want the very first book I read about Autism to be specious bullshit.

The "no empathy" thing was a sticking point for me, for a long, long time. And that is highly gendered, because we are all taught from birth that Women are the Empathising Sex and if you are female you will be much more highly penalised for not performing empathy. No empathy? Are you calling me a Failed Girl again? But also, like, the dictionary definition of Empathy, I *can* totally do that (I can't always do it at *speed*, in a conversation, and I am not very good at expressing it in appropriate ways). But actually reading that Triad of Impairments, from the point of view of other Aspies, and the stuff that is missing or impaired - it was just such a revelation, both in terms of explaining why I am really bad at the stuff I am terrible at, but also filing in gaps of "you mean some people can *do* that?" Sometimes when you have one of those kinds of impairments, you're not even aware of it as an impairment because it just does not exist. How can you tell if you have a blind spot if you have never seen it?

Also there is still so much stuff that is so gendered, in terms of social skills and "do you know when it is your turn to speak in a conversation?" has different *weights* for a woman speaking to a man, and a woman speaking to a woman. How do I recognise when I'm just being Bad At Conversation because I suck at the rhythm of turn-taking, and how do I know when A Man is just not ceding the conversation because he's a sexist pig who interrupts women?

I do have a quite good feeling for what the maths-systems-logic form of intelligence is, but the idea of putting it at the end of a continuum with "Empathy" at the opposite end is just... I am going to make a little joke now so please no one get offended, but this is just the kind of non-logic total fail of sense that ~neurotypicals~ seem to do and then call it a social convention and call you rude if you don't go along with their crazy-talk. Just... waht. No.

Silberman's defense of Asberger -- at least as glossed by Baron, for whom German seems to be an unknowably obscure language -- is seriously weak. I would like to say more, but the thread has moved on.

I have a real issue with the concept of "social skills", which seem to me completed loaded with social convention and reinforcing social norms (especially around everyone 'knowing their place' in groups and in the workplace).

As someone who self-idententifies on the Asperger's scale, I prefer to say that I can understand "social skills" - but can't always be bothered with them.

Michael Foley's book 'The Age of Absurdity' has a good section of absurdity in the workplace and how there's culture of work banter and professional 'humour' which is used to reinforce social norms:

Professional Humour (PH), a more sophisticated form of Professional Cheeriness (PC), is the key core competency, a universal facilitator and lubricant, but confusing to the untrained because, although the jokes must always be rewarded by hearty laughter, they must never be actually funny. This is because Professional Humour is not humour but facetiousness. Humour is a way of engaging with reality; facetiousness is a way of evading it. For instance, Professional Humour should always sound wickedly subversive while offering no threat whatever.

Established Colleague (withhearty roar): ‘Are you behaving yourself?’
New Colleague (lamely, not yet facetiousness-trained): ‘Yes.’
Established Colleague (with even heartier roar): ‘What a shame!’

And it should sound like savage abuse while remaining entirely innocuous.

Can't we find some more interesting ways to use our social skills?

(sorry for the rant)

Sorry, but it took me a couple of goes to parse your posts, and I'm still not entirely sure I've got it.

Partly because "can't be bothered to" is a real bugbear for me. Like, i have been accused, my entire life, WRT social cues, of people insisting that I am playing "can't be bothered" or "won't" when it was actually a "honestly, genuinely, just can't". And part of working with a therapist has been not just taking the tests, but going through the matrices of symptoms and patterns of how Asperger's manifests, and separating out the "can't" pile from the "won't" pile.

I think you may be talking about a different thing when you say "social skills" to what I would mean by "social skills". And also, social *skills* - they key is in the name. They are things that everyone, neurotypicals and autists, have to learn and master, though it's easier and more instinctive for neurotypicals because it's easier to learn a dance when you can "hear the music". Social skills, as I understand them (I may be wrong! I suck at this stuff!) are techniques people use to avoid being rude to other people, and to lubricate social interactions and make them smoother and easier for everyone involved. Social skills are like saying please and thank you and offering biscuits around before helping yourself and setting boundaries and recognising other people's boundaries and working out how to stay on the right side of them.

The kind of humour you're talking about, social ritual and social dominance... I don't *get* 90% of "humour", especially of the kind you describe. That kind of humour is basically cruelty as used to establish and maintain a social hierarchy, and to establish and maintain in groups and out groups as a kind of bonding humiliation ritual. I don't get that stuff. I don't understand it. It's not even "I can't be bothered with that" so much as "that's awful, and I don't want to be associated with that kind of awfulness." (Not to mention, the few times I've attempted to participate, I've messed it up and got it horribly wrong, to the point where the people I've tried to play those games with have had reactions not of "OK, that's funny" but "OMG, Branwell, that's *awful*!" OK, how am I supposed to tell the difference between awful and funny, because it all just seems awful to me?) I don't file that under "social skills" but under "interpersonal politics" which instantly engages my "avoid! avoid!" mode.

unfortunately some people think that not participating in that "in group/out group" meanness/banter/whatever is an act of rudeness in itself, which can make for more hidden pitfalls. you're right about learning to dance - no human is innately good at learning social codes, and there's a lot of degrees of awkwardness and just plain getting things wrong amongst neurotypical people too. which all adds to the potential horribleness of social interaction.

I'm not sure i have the energy to read through long complicated posts but girls that act both girly and maley is attractive

Kind of people you want to slap and pet at the same time

Dont mind me, i'll see myself out

Well here's a short post for you: FUCK. OFF.

maybe a post for the tyranny of humour but I'm someone who absolutely could not get from a to b socially without that particular motor, and I subscribe 100% to that deathless dlh post in that thread, and even so smh forever at ppl who come over truculent at ppl who can't or won't navigate this mode, like if the former is "tone deaf" the latter must be tone deaf dumb blind and stupid

i find myself regularly gently explaining to people at work that it's fine if banter is their default mode of professional communication but they shd at least have a think about whether the people they're using it on have got a clue what they mean by it

Like when i told my extremely religious coworker that zombies are real and I have proof. A little guy by the name of Jesus Christ. Then another coworker piped in about the resurrection of JC or something. I was sweating in my seat but luckily the extremely religious guy said "haha I get it. That's funny".

What a relief

Im a self-proclaimed absurdist and absurd humorist so i know a thing or too about the topics on hand when im not being slimey. But i like to think of myself as a cute slimeball if that makes anything better.

please go away

If ever there was a time for multiple fp's it is now

You are right, I should go away. But I do feel at home in autistic threads for whatever reason.

The science of gender is and will always be offensive. As far as I'm concerned, gender is a word that has lost all meaning because it's always dependent on context.

-

I'm offensive for different reasons and I do wholeheartedly apologize.

Anyways *uck gender. We should all be gender-less slimes and the world will be a better place.

Gender science is a rabbit-hole that only leads to nonsense.

You weren't making a controversial argument about gender and brain structure though, you were just being a fuck

Yes, I was talking with my sexual organs and that's what I am apologizing for.

I banned the Once-ler from this thread as their contributions really didn't seem helpful + got multiple flag posts. Hope that's okay with you guys/not too much of a mod abuse of power.

I was hoping for a 3-day sitewide, at minimum.

i have a feeling nature will take its course...

I've only seen the stuff on this thread and made a call on it being disruptive/douchey but not nec. part of a larger pattern - maybe make a Moderator Request Forum thread if you think it merits further action so as not to further sideline the interesting discussion on here? (NB not speaking as "voice of the mods" here, just my own take, willing to hear out other views.)

v good call mod

Thank you

figured this revive was going to be about this case -- http://www.nytimes.com/2015/10/25/magazine/the-strange-case-of-anna-stubblefield.html?_r=0

there are some interesting issues re: consent, validity of sexual needs of disabled people, etc that i've seen touched upon elsewhere, but given that facilitated communication is so thoroughly discredited i'm not sure they're directly applicable here. woman is a straight up abuser and deserves the time she's gonna get

(btw I know the person in question is not autistic, but some of the same issues are raised re caring for profoundly disabled people that make it maybe appropriate for this thread )

For once, it would be great if, when mods saw a dude come in a thread, and pound his dick all over his keyboard and derail and borderline harass women in that space, that we did *not* have to start a mod request thread, and expose ourselves to the rubber-necking meta-banter of every board lawyer with an axe to grind while we make a case for our humanity and right to have a conversation without some asshole butting in and telling us his dick has opinions on our gender presentations and what it would like to do to them.

It would be nice if for once, a mod stood up and said "this is not how we treat women" and "behaving like this is not tolerated, and has actual consequences".

But no, today is not that day. (It is never going to be that day, huh.)

No, you're entirely right, you shouldn't have to do that. As it stands, no Mod Request thread has been started and it shouldn't be necessary. On this occasion (unless a mod was actively reading this thread) it looks like the Flag Post function did its job. If there was a slow response then apologies, that may be down to it having been Sunday afternoon.

Having looked at the user info, the poster in question is Captain Lorax, who received a permanent sitewide ban three years ago. Judging by his enthusiastic requoting of his terrible earlier posts on the Confederate Flag thread, this sort of behaviour absolutely IS part of a larger pattern and I don't see any reason why that ban shouldn't be upheld.

I thought that Lorax's sitewide ban from 3 years ago was self requested?

mods request

The plot thickens.

my son wandered off from the Co-op whilst I was in the queue tonight, the queue was only one deep and normally he just plays with the dog who is tied outside whilst i pay. He is 13 and non-verbal and with very poor spatial awareness around traffic and extremely vulnerable. After running in various directions in panic mode I went into the PC shop next to the Co-op and phoned the police and then ran almost a quarter marathon looking for him and went back to the Co-op, where their staff had discerned from the PC shop guy what was going on and were checking the CCTV footage. Then whilst I was running about the area like a maniac the police phoned me and asked me to return to the Co-op to identify my son on the CCTV footage and then go home, because they can't send out the search helicopter until they have checked he isn't at my house. I was in a bad state at this point and severely dehydrated, then he said we have a 100 officers on this, so go home. In my state I said "Bullshit" but there actually was shitloads of police in the area.

They found him on the edge of a neighbouring estate near the local high school about half an hour later. I actually hugged the copper who told me, whilst properly losing all remaining dignity and he was a big bastard and looked quite awkward!

I am glad I didn't hesitate to ring the police because they did a fucking amazing job. I am just glad his mum wasn't home and was at the local Town Hall when it happened. She went to a meeting about local A+E hospital closures and all I get is "I'm away for 5 minutes and this happens". But she is quite ill right now and the stress would have been bad.

I am looking into tracking chips tomorrow, because this is not happening again.

Jesus. Glad it turned out OK. Hope you get over the shock quickly.

I still can't sleep tbh, but at least in a good sort of elated and relieved manner, but jeez, Fuck me, what an evening.

On the positive side - what I did right was not hesitating calling the police and explaining his level of vulnerability well to them. At least that is the victory I am giving myself tonight, it still could have ended bad.

it's horribly easy for this kind of thing to happen, try not to make yourself feel bad about it dude, glad it turned out fine.

seems like you did exactly the right thing but fuck that must have been scary. was he ok after too? hope you get some sleep at some point

He was more than fine and in quite a giddy mood, it was all just a lark to him. Whilst I was giving the police a statement he was doing an opportunist kitchen raid on his rationed supplies of crisps and nutella, which is standard behaviour. Hitting the shiraz at 3am helped with the insomnia but oh dear I'm feeling rough as today, but still quite overwhelmed at the feeling of relief.

Today his school are going to try and teach him a social story about the dangers of his type of adventurism, hopefully some of that will stick to him.

damn man. that's some tough parenting hurdles.

We call him Notorious Al now, because since that incident he keeps getting recognised by different police officers throughout town. I still need to sort out some kind of GPS tracking device in case it ever happens again, I know it is built into most smartphones but that isn't really practical.

On Sunday we were out walking the dog and I took him back to where he was found by the police to see if there was any reason why he was drawn to that area. He seemed very interested in the hissing noise from the gas distribution point and one of the houses had a large pigeon coop in the garden. As odd as it sounds little things like this are a major attraction for him.

can see that. interesting noises and other sensory stimuli are definitely a big attraction to some autistic kids.

http://www.getwestlondon.co.uk/news/west-london-news/police-appeal-trace-vulnerable-boy-10889818

"David also likes travelling on the transport network and, when missing before, has been found on buses and trains." Hopefully this kid will be sat on a bus somewhere rather than finding danger, that love of travelling on buses and trains is so ASD typical.

Since Alex had his own adventure I keep googling these missing kid with autism stories. The frequency of this happening and the amount of times it ends badly says to me that GPS trackers should be essential safety equipment for ASD kids. Not that I have found a practical option yet, there is probably a massive gap in the market here for entrepreneur types.

could you put it on a belt buckle? Or sole of a shoe? These are probably stupid things for me to suggest but it's what occurs to me.

http://www.wareable.com/internet-of-things/the-best-kids-trackers

The problem with the watch/bracelet type devices is that ASD people often have an aversion to wearing things. PocketFinder looks quite good but rather expensive, although it does looks rugged and fit for purpose. I am going to read up on some of cheaper devices first, see how reliable they are.

Glad to read that the kid from Hounslow has been found free from harm in Westminster this morning.

i think the best bet would be something somehow stitched into favourite items of clothing but i don't know how big the tracker needs to be, assuming real life is not the same as James Bond

one guy i knew used to wear a jumpsuit with parents' phone number very visible on the back

Yeah labels with contact details are always a good idea and so are jumpsuits! Most of the GPS devices seem to be pocket sized but they do require charging. It seems some of the cheaper ones require a sim-card and send back their current location when you phone them and some require you to pay an annual subscription for online services. Some of these devices have Voice surveillance built in, that seems a bit creepy and indecent tbh - especially when it is a concealed device.

I heard some self-congratulatory beeb cack about The A Word on R4 today. Not watched it (and don't intend to either) and just expect it to be The Archers with some added hand wringing about cute-non-verbal-boy, boo-hoo, type trite shit like you expect the BBC to produce ad nauseam. I am not expecting them to portray the diversity of people on the autism spectrum, like young adults, middle aged people or women, or perhaps people not from model middle class families. Or even the diversity of the autism spectrum. No, not the fucking BBC, they are obv going to go down the standard cute m/c boy trope and then pat themselves on the back for being myopic, mediocre, condescending twats afterwards.

I know this lady who works in the local Asda who has two children with autism. One of them has ADHD running with it, one of them has a form of Tourette's running with it and her husband also has a diagnosis of Tourette's Syndrome. She always says she only works there for some time out, but she says it without a trace of self pity but I can see in her eyes, a kind of jadedness/ennui that I understand.

One of the bits I caught from R4 today was that the Eccleston character in The A Word says something cringeworthy like "The boy is broken, we need to fix him". GTf back into yr Tardis, you fucking hack eejit!

Sorry, I have had a few beers and have been arguing with my partner about this shite and needed to vent.

sure thing!

i am feeling overwhelmed right now. we are considering a move to be closer to my family but the area where we might relocate seems to have a somewhat substantially lower level of services available than where we are now. my son is in a good place where we live, the inclusion school where he's at is pretty amazing, somehow, especially for a school in a huge urban public school system, and we have a lot of private therapists and groups w/ whom we've built good relationships, we feel pretty established w/ his services right now, so we don't want to leave that, but we are also faced w/ a fucking insane cost of living here which is not sustainable for us in the long term. we are looking into the services available in the city we might move to and they are just not at the level we'd want even if it is way cheaper to live there.

also we just got back from a family trip and my son, who is pretty high-functioning especially when well-rested & well-fed, was just totally overstimulated by all the new people & places, he had a great time but there way more challenging moments & tantrums then we're used to, he pretty much didn't want to be around me in any way and that was super hard

marcos i'm sorry, that must feel awful when your kid willfully blanks you out, you're right tho about overstimulation being the big distractor.

if you're in the uk please ilxmail me, i've got a few organizations i could suggest that are v. helpful. if you're not here then go ahead and chat anyway, on this thread or privately, there are definitely enough posters here with experience and knowledge who have important stuff to stay

xp
Yeah, I know where you are coming from and whenever you feel like your inner psyche has become sufficiently calloused up to deal with various difficult behaviours, they have this tendency to take you out of your comfort zone!

The first time my son started getting violent was bleakly depressing, but now I can deal with it a lot better than I did a few years ago. There never seems to be many comfort zones between these increments of getting used to stuff, but that seems to be the case with many things in life.

Good support vs sustainable cost of living is a real difficult one, GL with it.

yowza, marcos - sorry you're going through that. Sympathies.

I've done some of the same math in my head - lower cost-of-living, but fewer services provided - so I empathize with you. Hard decisions all around.

For us, I know we're paying a lot to live where we do (CoL, taxes, etc.), but we simultaneously feel fortunate that so much care is provided as a matter of course. Some time ago I had a little a-ha moment of connecting all these "free" services to the exorbitant tax bill and cost of living, but I know it isn't as simple a tradeoff for everyone.

thanks everyone, it is nice to be back home at least, seems like me & my son have a completely different relationship when we are back into our normal routine, he is happy to see me again. the trip was also just completely exhausting for both of us so that exacerbated things -- when i'm not my best and he is not his best, things deteriorate quickly. when i'm exhausted i tend to get really impatient and attempt to take a "harder line" approach which is ... not at all what my son needs. now back home into our routine i'm much more aware of how much patience he requires of me and i feel like i can be a helpful & supportive father again

NV i am us-based but i appreciate the offer of support very much!

good news too is that my wife found what seems like a really good agency in the prospective city, so that's exciting

we're also aware that if we move we might have to fight a little to get the services specified in our IEP, here in boston it has been a breeze so we haven't had to fight at all. we're a little nervous about that possibility, my wife is an amazing advocate and i know we can do it but i also want to avoid going into "battle mode" and making things worse

Good to hear things are more positive today, Marcos.

I bumped into this 36 year old man with autism today at the swimming baths, wonderful guy who likes to shake both your left and right hand. As was his support worker who has been working with him for 14 years. It is always refreshing to talk to people who actually understand autism, sort of gives me a positive lift for the day. When you feel like you are on your own you can sometimes become vulnerable to other peoples hostility and shittiness. Sometimes just a simple chat can be good therapy.

Some depressing bullet points from the latest NAS survey. I am quite a bloody minded, stubborn type - so when people are arseholes towards Alex I get in their faces and let them know how wrong they are and it even makes me even more determined to take him to his favourite cafes, swimming pools etc, not that it isn't completely depressing but I do have the armoury to deal with it. When ASC people + carers are becoming socially isolated because of arsehole behaviour then attitudes need to change and perps need to feel the full weight of anti disability discrimination laws or something.

In a separate study: "Researchers from Newcastle University said the age of diagnosis has not decreased in a decade - still averaging four-and-a-half years. Jon Spiers, chief executive of Autistica, the autism research charity that funded the study said ways to speed up diagnosis were needed, especially for "those left isolated for too long, such as girls with autism".

*79% of autistic people and 70% of family members feel socially isolated
*84% of autistic people said people judge them as strange
*50% of autistic people and family members said they are so worried about how people will react to their autism that they "sometimes or often" don't go out
*74% of family members said people tut or make disapproving noises about behaviour associated with their child's autism

It is always refreshing to talk to people who actually understand autism, sort of gives me a positive lift for the day.

completely, i am so grateful for these people, friends of ours who get it and know how to communicate w/ J are so important to us

and connecting w/ other families w/ kids on the spectrum or who have related conditions has been immeasurably valuable

I got an email from an autism support group about a local school having it's autism provision closed. Then after a google I noticed that my LA has been closing all the autism provisions at all the mainstream junior + high schools, including the one Alex attended for 2 years. Fucking cuts.

We just donated a zorb (huge fucking inflatable ball that you wear) to the school for some sensory fun, because it wasn't practical in our garden or without a car + portable pump. I was loading it onto the school transport + this kid at the front who is never short of something to say says "You are giving it to the fucking school? Why didn't you give it to me?". You had to be there obv

Alex was supposed to be getting his booster immunisation jabs, it is not happening because he starts kicking and throwing punches when he sees needles and he is very switched on to any types of kidology or "surprise attacks". I explained to the school that the only successful invasive treatment was when he was put under gas for dental treatment. But they sent me to a health centre to try again and the only way I could restrain him adequately for two injections would bruise him or he could get sufficiently upset to trigger off an epileptic fit. And it was the exact same nurse who had failed to inject him at the school. Just a complete waste of fucking time, again.

surprised nobody has come up with another way of administering meds for situations like this

i'm so sorry calzino, those situations freak me out and they are super hard

miraculously we had a dentist trip that worked out very well, amazing senstive dentist who works w/ all kinds of kids every day so he had some idea of what to expect. it was basically just a cleaning though and i have no clue (other than gas) how J would make it through a cavity filling

That was exactly what I was thinking. The nurse told me to talk to the GP who was a total supercilious arsehole with a withering "what's this got to do with me attitude" so trying the paediatrician next, he is a good guy and has so far been pretty solid.

xp

obviously any google search for autism and injections is doomed to founder in a sea of idiocy

Gas is a good solution because of it's rapid speed but I don't know if there is some issue of mixing it with immunisation jabs, but it is the only solution I can think of.

lol yeah! we were joking that Alex is going through an anti-vaccine period!

haha

i think it's more that the risk with gas makes people reluctant to use it unless there's a "serious" need? they don't seem to routinely offer it to kids at the dentist any more like they used to

Alex got gas about 7 years ago to remove a first tooth he had damaged by constantly tapping it with stuff. There literally is no other way he could have had dental treatment without it. I will sign a waiver for gas any time, the chances of it killing him are absolutely minuscule.

absolutely! just saying it seems to be shied away from by medical people nowadays.

wonder why you can't take everything on a sugar cube like in ye olden days?

I asked the nurse about that the other day, she said something about it having to go directly into the bloodstream to work. Even a nasal spray would be more doable than a needle, but if you could it into Nutella the job's done!

*put it

Today I faced off a bunch of thugs who were taking the piss out of Alex. I just called the biggest one a sad prick and gave them the middle finger from the back as I walked past. Because they didn't get a hot rise out of me it nearly killed them. When I got to the bus stop I heard a noise and noticed they had ran off. It turns out this nice old middle class type lady had heckled them from her car and one of them had threw a full lager can at her car and it dented it. When she came and told me what had happened to her car I didn't know what to say because the bus was coming and I was burdened with loads of shopping. I am going to ring the police about this tonight, fuck it.

Oh sweet merciful jeebus calzino. Good on you for defending your boy and generally advocating.

The reason some medicines/vaccines can't be taken orally is that they're protein-based. Give your stomach a protein and it says "yay food" and tries to digest it. That's why diabetics can't just eat insulin, and must inject.

People are working on ways around this - I heard a thing on the radio about a type of subcutaneous capsule that dissolves when hit with a laser, and you can modulate dosage that way. Not helpful for a kiddo who can't have a vaccine, but there is work being done in this area and I hope that work continues.

The obvious solution is to have a nurse stop by the dentist's office when he's already getting sedated dentistry, and just do the vaccinations at the same time. This seems as likely to happen as my butt flying to the moon and back before breakfast, of course.

Just rang the police and it was a waste of time because the lady whose car got damaged hasn't reported the incident.

He has only ever had sedated dentistry once in his life, YMP. The dental check ups aren't much fun either, but we manage to muddle through them:p and thanks for being nice!

Alex finally had his booster vaccinations today. He fought hard and resisted the needles for a good 40 minutes until they weakened him by pouring buccal midazolam onto his crisps! It seems quite funny now but was stressful as fuck at the time.

https://www.youtube.com/watch?v=6JsmtRJ7M24

There has been a lot of hard work to get to this point, but it has been worth it.

I don't know you, Calzino, but that made me cry for joy. Just wonderful.

same, that is beautiful.

:)

thanks people :)

:D

Fantastic :)

Today my son came home from school in a changed t-shirt and jumper. Some classroom assistant had decided that he "smelled bad" because another student said so and refused to sit next to him. So they singled him out and changed his t-shirt and jumper. The returned jumper + t-shirt had a total neutral cheap washing capsule fragrance, but no hint of shit or BO. So I have put a sweary fuck you reply in the dairy (with the caveat of a serious formal complaint if they repeat this pointless bullying shitiness) because I actually mean it and am sick of dealing with these incompetent fucking arseholes. It also coincides with them not offering any other schooling beyond 16 on his latest statement and us telling them that is lame after what they were offering at the educational tribunal we lost.

holy shit

do they let just anyone be a classroom assistant

Definitely yes, as long as you can pass a crb check, then you are fit for purpose to be a classroom assistant or even do any job in schools. Ian Huntley was ok but anytime I worked on a school job this embarrassing caution I have for for theft used to always resurface!

Some of the classroom assistants in special schools are just not fit for purpose and there are more likely to be more of them in the future than less, sadly :(

ime, whether things go well or poorly always comes down to the quality of the people involved. you are, of course, foremost among the great, dedicated people alex has going for him. the others come and go and are good, mediocre or bad without much predictability. how well are you handling the burnout problem (your own, that is)?

I don't really believe I have it that bad tbh. I do drink a bit too much, but I walk a lot and exercise a lot as well. We are all burning out really, nothing spesh about my probs.

glad to hear it. if it were bad, you'd be the first to know

thanks for your kind words anyway, Aimless

you're obviously doing a great job and any child would want a parent like you in their corner

the crb/whatever system is so grotesquely bureaucratic and outdated. we need a revolution to sort out education let alone anything else

dude have they refused him an EHCP?

No, he has a revised EHC plan that seems to have recycled bits from his previous statement and talks about preparing him for post 16 education, but just not at that school. Seeing as it is supposed to be an 11-19 whole autism school/college now and Alex is a definitive case of classic autism, they won't give a reasonable answer why they want rid of him at 16. Which wasn't in the script at the SEN tribunal we lost.

the general standard of EHC plans I come across is terrible and there was a piece in FE Weekly the other week suggesting that most local authorities are way behind in even producing them at all. I'm sure you know your stuff and I know how god-awful schools and tribunals can be when they just plain don't want to deal with a kid, but are you familiar with IPSEA? if not, have a read of their website, it includes advice line numbers iirc: https://www.ipsea.org.uk/

for example I'm pretty sure that by the time you reach year 11 your EHCP should name your preferred choice of Further Ed and any organization that wants to say no has to make a very very strong case

I would say that from my observations you will be completely surprised to learn that the way local authorities, schools and colleges are carrying out this work on the ground looks to my untrained legal eye a lot like they're completely ignoring the law and/or breaking it at every turn

In theory the EHCP should be completely empowering and legally oblige the LA to meet his Further Ed requirements up to 25 - but it sure doesn't feel like it is at times! There is a statement review coming up in a fortnight so hopefully there will be some answers amongst the waffle at this meeting. I really ought to have known about IPSEA, but as terrible as it sounds - I'm often looking for excuses to read anything but this type of important stuff that I should be reading.

Calzino, that is so fucked up. I'm sorry you and your son had to go through that shit.

Is there no way to take this up with someone higher within the school? It's entirely degrading and wrong. Sure you probably already looked into it but this assistant shouldn't be around kids imho. My sympathies.

I am also not a fan of "useful" reading, I feel you. The IPSEA site has some excellent guides to what local authorities should be doing. as I say, my experience on the ground is that most are bending heaven and earth to avoid doing their legal duty. it might be worth calling an IPSEA adviser and seeing if they can do some advocacy for you if you don't feel you've got sufficient legal backing at the moment, because you're right about what an EHCP is supposed to achieve and sometimes it takes somebody who knows the system backwards to make them accept their responsibilities.

I think some medication is probably needed when he is getting violently aggressive at least 5 times a day. As daft as it sounds: the strategic placing of cups of water helps. Even when he is in Id monster mode, if you threaten to pour water over him, he backs off sharpish. And then you can offer him the cup to drink as a calming measure. He has been banned from his transport since last week for persistent violence. Ironic that at the education tribunal we lost, one of the points brought up was that the local authority school don't train their transport escorts properly and they are generally not fit for purpose.

I'm sorry to hear it, calzino. This sort of thing comes up with adults with dementia, too. I've encouraged my loved ones to just give me the damn haldol without hesitation if I'm ever in that situation.

My colleague's book about death for kids (parents and teachers, too) on the spectrum is out! https://www.amazon.com/Have-Question-about-Death-Children/dp/1785927507

can't imagine how difficult this is to deal with calzino; if it's any consolation almost every autistic person i know has grown out of their violent phase once they get into their later teens

well that sounds encouraging. It is manageable inside the house, have explained to the neighbours because the level of noise he makes in rage mode is pretty extreme and some might assume a murder is occurring and call the police! But it is an almost impossible situation if you are on public transport or in any busy, crowded place - because most people can be quite hostile to such situations. The other week some helpful citizen told him to jump off the bridge when he was with my partner. In that type of situation when you are already stressed - I worry that I might lose self-discipline and end up swinging for some impertinent fucker! Not helpful - I know, but part of the risk assessment why going to places and stuff (other than greenbelt walks) is off limits at the moment.

have you got a sense of what triggers the violence?

Sometimes quite innocuous things like whether something goes into the rubbish or recycle bin or the wifi going down can trigger off an episode. But mostly - at least to my neurotypical perception - they just seem to come out of nowhere. As frequent as they are now, there could be so many triggers I wouldn't even know where to start.

also sometimes there seems to be a 10 minute delay in his response to situations, so you can't always tell what it is you have done wrong!

yeah I suspect there always is a concrete trigger but picking them out of the jumble of things happening out in the world can be nigh on impossible, never mind the limited possibilities for preventing these triggers from happening if they're the innocuous behaviours of other people.

it sounds like he's frustrated by disorder and he doesn't have the communicative strategies or patience to deal with it yet except by kicking off. he will develop better strategies and more patience as he grows up. stay strong bro.

Do any of your students have a PDA diagnosis? This is something that has come up in a conversation with a GP - not in a professional capacity, just chatting on a bus.

I think I've come across the odd one, it tends to be a footnote if there's a full diagnosis of Asperger's or autism. I've noticed some CAHMS services seem to be using DSM-V which lumps everything under autism and gives it a type 1,2 or 3 status. I'm deeply distrustful of DSM-V, it feels riddled with politics and unhelpful faddishness to me.

having said that I think demand avoidance is pretty common amongst young men with Asperger's, and it usually seems to be rooted in a desire to just do the thing they're most obsessed with - frequently that's video-gaming or some internet variation of that like gaming videos etc. it's pretty difficult for some young people to get their heads around the idea that somebody won't always necessarily be there to feed, clothe and house them and that they need to do things they find unpleasant or boring in order to develop their independence.

at the more confrontational end of that, I often advise tutors and support workers to use non-demanding language, to phrase instructions as requests and to treat work targets as something that the student has signed up to for their own benefit and progression, so that if they're not doing something they should it's not a failure of "discipline" but a case of them letting themselves down. tbh I think this is the approach you should use with every student, diagnosed disability or not. it comes more naturally to some people than others.

CAMHS, always cock that spelling up

We have just drafted and scanned the deregistration from school letter, because basically they are a bunch of useless fuckers that don't want him there anyway. The head of education lady played me quite smartly. When he got banned from transport she acted quite outraged and asked "can I be your representative here, because this isn't on". She didn't phone back since and is always in a meeting and I have called 3 times in the last 10 days and she never returns the call. If I don't pull him out of the school I will be in the farcical position of getting fined for non-attendance. These fucking people are more full of shit than Blairites and more monosyllabic than TM on mogadons. Absolute fucking nightmare to deal with and completely full of shit.

calzino I am so sorry that you are having to deal with this garbage. you and your son deserve better. sending you love.

Don't worry, he is better off out of that place. And thanks for the good vibes Owen.

Please say that "basically a bunch of useless fuckers" made it into the text of the letter somehow

I'd put in much stronger terms than that if I could, but you have to be careful in these times!

the "bunch of useless fuckers" have delivered bigtime today! I had to offer humble and profuse apologies to the head of education lady who I previously slated to some of her colleagues, but she didn't answer my calls for a fortnight. Anyway she has persuaded us to retract Alex's withdrawal from school letter at the SEN office. For a couple of weeks she is going to take him to school and back as driver and escort, until a taxi can be arranged with me as his escort at first, at least until a suitably trained one can be employed. And she assured us his violent behaviour is something they want to help him overcome and they have the personnel to help him. I can't really ask for a better response than that, especially in the current climate. Sometimes it is easy to forget that his dramatic behavioural shift towards daily violence and anger is a major challenge for them as well, and it doesn't always run like a well-oiled machine.

good news, glad to see people prepared to put the work in - no sarcasm, altho imo every child has an absolute inalienable right to have the work put in

I could be uncharitable and say the school have not dealt with the situation well + shit it about losing funding, but I'm quite humbled when someone is willing to put that type of personal 1to1 effort in. But yeah, I get ya.

https://www.vox.com/science-and-health/2017/5/11/15508006/what-causes-autism-spectrum-disorder-vaccine-theory

the url is misleading, this is a good piece

The idea of some people being more genetically disposed to external/environmental factors that may cause mutations linked to autism sounds plausible, not that I know shit. Definitely wouldn't have clicked on that url anywhere else but here!

I have just had my own kind of autism moment this week when I couldn't realise why someone who is very jovial and talkative with most people at the school keeps looking at me like he wants to drop me. It didn't occur to me that getting a taxi to park in a no-parking zone before the electronic gates to avoid all the transport chaos within the small car-park would absolutely enrage someone whose job it is to stop this kind of shit happening :p

When you aren't a driver things like no-parking zones are quite abstract concepts.

Because of recent dramatic events we have been prioritised for some respite, after getting turned down recently. That is good news. But the social worker also let slip that no progress has been made on the transport issue, and they are expecting me to be his escort for next term. I volunteered to do this last term as a temporary measure, and was reassured something would be sorted out this term. I can't work out why they can't employ someone to provide proper transport for Alex and the 6 or 7 other kids who have been thrown off transport. Using a taxi costs them £360 a week, alone for Alex and is a colossal waste of resources, and shows the money is there and is being misused.

I know it might make me seem like an entitled + ungrateful prick. But even though it is only 10 hours a week, I'm refusing to do this. Because it was getting the way of other things I need to do, and isn't properly meeting the terms of his statement. Apparently they are looking at bringing transport under the school's umbrella and training escorts in-house, but it is too late for Alex. This was my argument from the start: The whole autism environment the school is supposed to provide, should start as soon as they get onto the bus. And escorts who are throwing kids off the transport, because they are spoiling the harmony of their nice little drive through the countryside, are not fit for purpose and in the wrong job.

word.

i worked on a summer playscheme for disabled kids for more than 10 years, and part of that involved picking up and dropping off on a minibus. at least half a dozen children, morning and evening traffic, occasionally that could be a pretty long round trip for one or two. we always had at least one, usually at least two escorts as well as the driver throughout the journey, and some of our kids had potentially really challenging behavioural issues. i've had the occasional freakout with a distressed child trying to hurt themselves or lash out at staff, i've had kids trying to get up and strip off mid trip, all sorts. and it was a fucking joy to do, part of my favourite job ever, and as you say, if you don't want to do deal with children who are only being difficult because THEY'RE NOT HAPPY then fuck you, get another job.

We definitely need more escorts with your attitude NV <3!!

let's be honest, a lot of funny shit goes off on the bus too

Of course! There was a lad called Adam on Alex's bus who was extremely rude and loved nothing more than asking impertinent questions, but sort of hilarious with it. And in the 30 odd days I escorted Alex last term I only had one truly bad day.

I confess that the bus is an absurdly high percentage of what I like about my son's school arrangement!

The school's a mile away and he typically has a 30-minute bus ride (a it's gathering special-needs kids from a wide area). That's a whole extra our per day in which I know he's safe, I know he's loved, but I don't have to deal with him. Also he can sleep on the bus, so he gets some much-needed extra rest.

I hear that YMP, and can remember being just as content as you are with the transport. But alas not any more, and in my case the school is 20 miles away, hence my reluctance to do a daily 40 mile round journey, twice a day. Because certain people have just gone on their holidays this summer, and not given a 2nd thought about their dysfunctional transport problems that need urgent attention.

I hope things work out for you, calzino.

I'm not sure if I am being stubborn and unreasonable here, but will stick to my guns on this for now. Lol! will probably get browbeaten by formidable Julie (who is the head of education/family liaison person) who is an expert at getting her way, and crushing all opposition, without even seeming like a bad person.

i don't think you're being even slightly unreasonable

I'm going to quote you! I'll say there is a x-person who works with ASC adults, who says I'm being completely reasonable here!

i'm not a lawyer calz but in very simple terms the question i think is: is his school experience/quality of life being adversely affected because of local authority failing to meet the needs of his disability? if the answer's even halfway yes then i believe you're in Equality Act territory.

of course the reality on the ground is tempered by bloody-minded cash-starved local authorities but in principle their financial situation has no legal bearing.

(if you wanted to get devious i wonder if you could argue that the bus ride itself has a therapeutic value, as YMP was saying upthread - it gives the lad a sense of structure and mentally prepares him for school, whereas you could say he finds it more of a wrench being in the car with you.)

sorry for rambling, guess who's started back at work this week

No that sounds a reasonable argument and I will use it, and as well as the sense of structure it develops his sense of independence, because god knows - he already spends too much time with his parents.

also an excellent argument - other kids his age can travel independently

I had a heated argument with a social worker today, and under the pressure of me being 100% no surrender on the transport issue. And the arrogant pricks in Transport just as implacable. And him in between us, he was getting desperate and made a very judgemental comment to which I retorted his professionalism was going to shit here, and I called him a smarmy little prick. Probably not the best response, but fuck the little pissant! As usual Judith from the school is a formidable manipulator and player and is always on my side. Oh she was in tears when she heard Andrea had taken an OD etc.. But she hasn't phoned me back tonight. I think I'm just going to withdraw him from the school again, and home educate him for his last year. Whole autism school my fucking rectum!

Judith phoned back in jubilant mood, and Alex shall have transport and an escort from next week. She actually thanked me for being so obstinate on this and i suspect she is settling scores with people from transport who are causing her much angst in her job, and it is going to get much harder for them to throw students off transport in the future. Sometimes you have to stick to your guns, even when arseholes are making judgemental comments and you start to doubt yourself. Sorry for dissing you on ILX last night, Judith!

excellent!

Great news

yay Judith!!

I needed to get a new Autumn/Winter coat today for the kid and S M L XL type sizes are so un-standardised and random in the cheap shit world of Direct SPorts, that they have to be tried on. And I knew that it would be problematic trying the first one on, but then having to try on a 2nd when that fucker didn't fit would be a veritable bloodbath! And it was!

I went to a coffee morning earlier where some T2 councillor dronesworthy type gave us all a questionnaire on which disabled services should be annihilated. It gives you a chance to rate services in terms of importance by ticking emoticon smileys or thumbs up/ thumbs down or shit like this: If the Access Fund paid no more than 15 hours support per week for vulnerable 2 year olds, would this be good, bad or make no difference to you?

This is just the pretext for some really shitty deep cuts coming that will wreck the lives of many, and then LA can say b-b-but we consulted you!

christ

we had an IEP meeting with the school system the other day. just some of the dumbest goals in the first draft. like our son "will learn to enter a play space three out of five times" um he is 5 and he knows how to enter a play space, thanks

he has literally been playing in your classroom for the entire last year

Sometimes they put utterly achievable goals are there so as to be able to demonstrate progress/success. But you as a parent can presumably tell them that this skill is mastered and they can take it out, yes?

yea that's what we did

There was a grandmother at the meeting who was explaining that she needs the transport that is provided because her teenage grandson had always been taken by her late husband and couldn't adjust to getting on the morning bus without him, without going into meltdown. And this was only a recent bereavement, so she breaking down in tears at this point. I was sat behind the councillor drone and seriously felt like garroting the bastard. Don't kill the messenger etc, but damn he was such an oily slimeball. And his haughty, arrogant manner really pissed me off.

Ask autistic kids the wrong question- not even autistic kids - "do you wanna be at this college?" - it's ridiculous. My spiel is usually "yeah I'd rather not be here either but the government says you have to be so is this as comfortable as you can be?"

Alex is getting his first respite from his shitty parents in 15 years on Thursday. I told my partner: imagine how much help I'd have got if you had actually succeeded in fucking topping yourself! JOKES OF COURSE.

I mentioned formidable Judith upthread. She did it again and took down a pompous doctor type tosser who refused to sign a prescription for over the counter painkillers. Alex severely self harms at times by banging his head on solid floors and walls. His paediatrician reckons he is suffering growing pains within his dome and his brain might be pushing on his skull. But that he needs some painkillers at times is not up for dispute, but the school won't administer anything unless it has a doctor's signature. The doctor was implacably arrogant until formidable Judith steamrolled the fucker into a tiny ball!

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.

(I know this was 3 years ago but still, I feel this point should be made)

"People with ASC" are all different so not all of them are going to resort to violence when they get angry. For people with autism like myself that implication is a huge generalisation and slightly unhelpful.

sorry no offence intended, but my sanity hanging on a very thin thread has been the default position for a long time now. And my son's particular spot on the autism spectrum involves daily episodes of quite extreme violence/self harm at times. To the point I have arsehole neighbours phoning the police/authorities, even though they know very well he has serious behavioural problems at the moment. Any sweeping generalisations were not intentional.

No offence taken and I understand. I think the main problem with ASC in society is that because there isn't much information in mainstream education surrounding the issues that people (not referring to yourself) make wide assumptions based on the little they hear about it when in reality it's such an enormous spectrum.

Alex turned 16 last week, so now begins the fun process of the PIP application. I need to concentrate on the task in front of me, rather than constantly poring over stories of ATOS badness. At the moment Alex is going through a very volatile phase where little things like the lighting being too bright or a stone in his shoe is enough to send him into a rage. From school we get about half head bump notices to his positive behaviour awards. Let's see if these fuckers can find some way of presenting him as an independent and secure young adult! I have the backing of a statement, he's qualified for CAHMS assistance in theory- but they haven't done anything yet, twice monthly respite stopovers. It would take a serious work of fiction to turn him down, but stuff happens. At this point I'm expecting they might try and put him on the lower rate and I'll have to appeal against that. No point getting stressed.

I understood about half of that

PIP = the Disability Living Allowance. I don't understand half of the shite I post tbf.

new* DLA

ATOS = satanic corporation with gov contract for Disability Assessments.

I'd give a more comprehensive explanation, but rushing out the door r/n for a bus ..

This PIP form is a lot of fun. I'm probably better off not adding "a lifelong developmental condition's Approximate start date is birth, you low-down disabled killing creeps".

they need the education

An updated EHC plan arrived yesterday which has the NAS run Robert Ogden School in Rotherham named on it as his 16-19 destination. I don't think the Local Authority will be able to stop this because they don't have anything in their area offering the same, and the next closest college is in Oldham. Way to go Kirklees, you're doing a stunning job of providing education to young adults with autism.

I'm also going to have to fire off an angry email today re: the local swimming baths timetable. Now the only window of opportunity for disabled people to access the pool is 5.30 7.30 on a Sunday while this noisy "Wipeout" nonsense with floating bouncy castles is now 6 days a week. It's fucking infuriating is the contempt they have for disabled people, and local services aren't supposed to be dictated by the bottom line.

Is the Rotherham plan good news or bad news, Calz? Sounds like a good place but far away from home? How would the travel work?

He'd get transport to and from school directly from home and it's roughly an hour's journey on a good day, which isn't totally ideal, but the best available option. It is an excellent school and some of the teachers are quite highfalutin figures in autism studies. The school in Oldham is also excellent but the transport would take about an hour and 20 mins which is even less ideal. It is good news because the last time we tried to get him into that school, it went to an educational tribunal and we lost. His current school has improved a lot since then but sadly doesn't cater for 16-19's who are on the non-verbal area of the autism spectrum. Which is something that will cost the LA a fortune in transport and fees (Robert Odgen is a private school) until they get their act together.

His current school was transitioning from a non-specific special school to a whole-autism one, so as improved as it is now - it was abysmal about 4-5 years ago.

Once the school is named on the completed EHCP they're legally obliged to comply so well done.

Overall I will allow myself to be pleased about this development in that case! Hope he likes it there.

Thanks Tim. I think that makes it practically a done deal, but in the current funding crisis, I sometimes worry they might be fixing to wriggle out of it, but I don't think they can really.

Not saying they mightn't try, I've seen that happen plenty, but it sounds like they can't meet his needs in county and therefore ultimately they'll have no choice if challenged.

You may have to make a contribution to the transport costs?

I don't think so. The transport is also covered by his EHCP, which came in very handy when they tried to ban him from it. I heard it suggested at a meeting if people could make voluntary contributions to help them out, but nothing more than that has been suggested to me.

it varies from authority to authority. at the moment in Hull and in the East Riding families have to pay £300 a year last i checked. i'm not sure how the EHCP would factor into that but if they haven't said anything then you're probably right.

Is it that charge a recent development? It sounds fucked up to me, but obv in my Communist fantasia nothing gets paid for!

since my memory of recent history is terrible i can't be accurate but i think it goes back 2 or 3 years.

i'm trying to think and i have to say the majority of EHCPs i come across don't specify transport as a requirement, even when the student is in fact using local authority transport. that's contracted out round here tho, the councils pay local taxi companies, some of which are great, others not so much. i definitely advise every parent/carer to try and get anything they even think they might need down in writing in the EHCP - they are binding, even when authorities do everything they can to bend or ignore them.

It's written in his EHCP - not directly quoted here - that if he lives more than 2.3 miles from his school, then transport has to be provided from the doorstep to the school. Perhaps it is different for (I hate using this expression + being presumptuous here) the more high-functioning students that you deal with. Where Alex is on the autism spectrum, he can't travel anywhere unaccompanied, left to his own devices he would become one of the missing explorers you often read about in no time, and quite likely end up a road casualty.

I know the news comes with some complications, but congrats on him getting into that school! That seems like a very big deal.

cheers Karl. I'm pretty lucky tbh. He is going to a respite stopover tonight where he has a fancy bedroom with loads of fun gadgets and a sensory room. I'm enjoying a day off, making Bombay potatoes and supping lager. The bastards that make "difficult decisions" haven't managed to ruin his life just yet!

yea that is good news about the school calzino. our son was just offered a spot this week to start kindergarten at a school that will be perfect for him, we are really excited. it's also a trek for us - probably about 45 minute drive, and we don't have transport provided but it is pretty much on my way to work so it's not a big deal.

we are getting our younger son evaluated next month. we're not sure but we suspect he might have autism too, he's definitely different from our older son and is more social at a younger age but we see some quirks and similar stuff

I'm glad you found a good school. I always imagine in the vast expanse of the USA that school travel time would average much higher than the UK, so 45 mins sounds reasonable.

https://www.theguardian.com/commentisfree/2018/apr/16/pupils-special-educational-needs-children-mainstream-schools

I'm not just saying this because of the writer, but this seems like some myopic shit from Harris. Some kids needs will never be met in a mainstream school and a whole autism environment is a very important part of the package. And also what works for his son at some very nice school in London isn't necessarily going to be the same at some shithole sink school deep in the provinces! He seems to have read NeuroTribes but doesn't seem to have grasped that autism is a spectrum condition. He's right about it being a disgrace that 4,152 have been disenfranchised, but he is talking halfsighted bollox imo.

yep. i have a ton of thoughts but my brain is v scattered at the moment so excuse the bittiness of this.

inclusion as an agenda for families, charities and disabled activists is about ending the enforced physical and social segregation of disabled people. when it started getting traction with government it was at least partly because government/local authorities realised they could make budget savings by shutting down special schools - even when the people that were using those schools didn't want this to happen. there are still plenty of families of disabled children who want or who access specialist provision because in their opinion it works best for their children.

the main reason inclusion in mainstream schools fails is because the schools are unequipped to deliver specialised differentiated education. APOLOGIES TO GOOD TEACHERS OR FRIENDS AND FAMILY OF GOOD TEACHERS NOW BUT THESE ARE MY OBSERVATIONS. there are probably multiple reasons for this rather than simply money, but i'm sure funding covers a lot of it. the failures in inclusion aren't dissimilar to general failures in comprehensive education so this isn't necessarily purely a disability issue.

teachers either don't have time, or resources, or space, or ability to deliver appropriately differentiated teaching. maybe a few, i dunno, maybe in private schools. the majority of learning disabled pupils need to be TAUGHT DIFFERENTLY. the standard method of sticking a one to one support worker alongside the kids is not an educational solution imo. i see lots and lots of young people with qualifications from school that they appear to be incapable of reproducing at college and the obvious reason is that they've been over-supported - not taught, but dragged thru qualifications by TAs doing work for them. it just drags them further into a cul-de-sac of non-achievement.

brb, pausing for thought

Ofsted have identified this for years. Yeah it's Ofsted and they have their own agenda and i wouldn't trust them as far as i could tickbox them but they're onto something here. Classroom support is excessively used as a bandage for inadequate teaching. (of course me and Ofsted would probably disagree on the causes behind inadequate teaching, and this is part of the hopeless bodged mess of our education system on the ground. Their job is to blame anything but inadequate resources.)

what we have is a one size fits all education system where support and other initiatives are used to try and shoehorn a whole range of students, disabled and otherwise, into learning thru the same methods as their peers who get it. it doesn't work. there needs to be fundamentally different kinds of teaching and classrooms, including v small groups of 3 or 4 kids to a teacher in some situations. yes put it in the same school and let the kids mingle outside of classes but you cannot teach an average random selection of 20-odd kids in the same way in the same environment and expect them all to gain the same kind of experience from it.

here's somebody else in the Graun making most of the same points:

https://www.theguardian.com/teacher-network/2016/nov/12/secret-teaching-assistant-we-end-up-hindering-the-pupils-were-meant-to-help

TAs are often directed towards the weakest or most vulnerable students and expected to keep them focused and engaged. In some circumstances, we will work with one student for the entire lesson. This might reduce pressure on the teacher, but the resulting attachment to the TA does nothing to develop the students’ academic or social skills. All too often, TAs can fall into the trap of becoming surrogate friends for vulnerable young people, who then become ostracised from their peers as a result.

All Truth Bombs

i guess i am pro-inclusion but in the absence of inclusive education that's legitimately inclusive - which this country barely has, if at all - then it's natural for people to choose the service that best meets their (child's) needs and they must be able to continue to do that until mainstream is legitimately inclusive.

not even going to comment on Harris's implication that disabled people should be around to provide learning experiences for non-disabled people. apply that sentiment to your minority of choice and see how hard you can roll your eyes.

"not even going to comment on Harris's implication that disabled people should be around to provide learning experiences for non-disabled people. apply that sentiment to your minority of choice and see how hard you can roll your eyes."

this times a fucking million, thanks for framing that thought beautifully NV.

There is a Graun article today about colonial Belguim's Human Zoo of '58. maybe Harris should read that!

I did try the local mainstream school with the autism provision once and he was coming home with striped bruises on his arms, that were consistent with being rough handled by an adult.

that sort of thing is beyond appalling. the problem really is the gap between the noble idea of inclusion and the reality of how it works on the ground. equality without diversity, which as i say happens in so many other ways in education. it's hard enough explaining to kids why treating people equally doesn't necessarily mean treating them the same, what can you do when the adults don't get it??

this thread today providing a shambling summary of why i'm taking voluntary redundancy.

jesus, really? It seems quite obv from this thread that more like you are needed in education.

it's largely personal tbh but certainly partly because i am pretty much powerless except to watch the machine malfunction and try and make it a little less stressful for people going thru it, and i don't want to be complicit in the bad stuff any more

I'd be interested to know what ppl in this thread make of this podcast episode. I thought it was excellent but I don't have anyone close to me w/autism so I'm coming at it from a position of ignorance

http://www.bbc.co.uk/programmes/p05nc1s9

It seems charming and good that they are talking about the important self-regulation aspect of stimming. Neurotypical people laughing out loud or shouting WTF! on a bus, is not a good response to someone stimming.

and she's a Miles Davis fan. It's a winner!

I do like listening to spectrum people talking about their obsessive tendencies, cos my boy is non-verbal, but is just the same as them really.

ah interesting! i didn't think of that

My 7 year old son seems to be somewhere on the spectrum, just from what I've read - he obsesses about things, is too literal in his communication, finds it hard to do social stuff, too much noise around makes him go into a mood, but obviously I'm no expert and no way to know for sure. He goes to a state primary school in the UK and does well, but really not sure he is suited to the way they teach, feel like he is just left alone to get on with stuff (it's a genuinely failing school which we're trying to leave but that's maybe another issue)

Anyway, point it, would it be useful to get him diagnosed? And how would I go about getting that done?

at his age - yes.

i'd advise you to discuss your concerns with your GP and ask for a referral to either Ed Psych or CAMHS depending who handles diagnosis in your area. iirc the school could also start the process by approaching Ed Psych but that doesn't sound the best option in your case.

if you can find contact details for an assessment and diagnostic team in your area you might be able to contact them directly, too.

not bothering to intervene or diagnose if the child isn't creating obvious problems seems pretty common in our schools and obv this isn't a good approach. a diagnosis would give you more options for support and help, including things like appropriate exam arrangements, further down the line.

fwiw I have a friend who asked me the same question a few years ago, and he decided against any action because his son's behaviour was only slightly problematic and it seemed an easier option to muddle on. Now he is terrified that he is too fragile for this meat grinder sink high school he is supposed to be starting in September and is concerned he might need some help.

and that's why i advise yes. i think diagnosis is considerably less important if you make it to adulthood but then it becomes a personal decision really.

OK, we have recently moved and are registering with a new doctor so seems like a good opportunity to do something.

xp

this is the aggravating thing about schools being reluctant to create EHCPs, it's like they're terrified they'll create a bunch of financial and legal responsibilities when a lot of the time it's just about kids having appropriate options for further ed and being able to sit in a quiet room to take their GCSEs if they need to

After going through a lot of worrying about having to take Alex for a PIP assessment at the dreaded ATOS assessment centre in Morley, I have just received a letter confirming he has been awarded PIP w/ enhanced rate for mobility and enhanced rate for living needs, without any need for further action. The medical evidence must have been enough, but the DWP are still vile for how they are treating people with MS and so called "invisible" conditions. But fuck, this has just taken a shitload of worry off my head.

that's great news!

I feel a bit guilty about being all happy and triumphant considering the amount of people who need the same support, but got the other DWP letter. But fuck, you have to be happy sometimes in this life!

that’s great news:)

Yes - wonderful :)

excellent stuff

thnx ppl. The uncertainty of the situation was causing me some real angst. I was ready to say: I'm going back to work, you will have provide 40 hrs a week care for disabled 16 yr old and 47 yr old woman with MS, otherwise we are all fucked!

Fantastic news man!

cheers LBI!

Can only imagine the relief <3

since i'm back already congrats calz

I'll tell what is a load of fun. When a neighbour makes a 2nd malicious and ignorant, hateful as fuck complaint about my partner physically assaulting Alex. When she is physically frail, all 5ft and spare change of her, has multiple sclerosis, hasn't even the dexterity to open a medicine bottle, and he (almost 6ft and built quite large) actually threw her over his shoulder last week and left her with bruises all over her arms (this isn't personal, he's a beautiful kid really). Because was this was the 2nd malicious complaint from this fucking oxygen thief, the whole child protection mechanism went into full effect, and he was pulled out of school for a medical examination, that we had to sit through, knowing that if he had corroborating bruises on him, he would be full section 47 taken into care at this point.

All that was found from the medical examination was the beginnings of eczema rash on his arms, and some mild redness on his head resulting from self-harm because he was head-butting the window in his transport to school earlier.

I was going to screw some Inch and half 8" screws into someone's tyres last night, but I calmed down.

Social Worker is telling me we might need some extra support, and my partner needs to apply for PIP again, and she will look into helping her. So it hasn't ended as badly as the malicious complainer wanted it to end, but fuck them all tbh!

I'm so sorry you're having to endure this. I would happily endorse the screws going into the tyres as a starter!

cheers. Partner is getting an MS nurse now and kid is getting CAHMS nurse, so good things have come from it. But that certainly wasn't the intention of the malicious reporter.

Damn, calzino, that is awful. I hope your dumb neighbor will shut up 4ever now, and I'm glad some good has come from it

calz your good humour in these circumstances is glorious, yr a fkn trooper and an inspiration. best to you and yours

OTM.

I think I've been guilty of humour fail on here countless times tbh. But that is not a good feeling and I do try to avoid doing it again! Anyway thanks ppl, a couple of dark days have passed, but am feeling a million times better today.

at least i think the majority of social workers/local safeguarding children boards are more aware of the issues nowadays and try to respond proactively. everybody otm, you deal with some tough situations way better than a lot of us might, i hope you all get the appropriate support for times like these. i still think that as he gets older he will get better at managing a lot of his frustrations. i'm sure he's a total joy most of the time, which is pretty much industry standard for any kid.

some of the younger social workers who initially came out to the house were abysmal and really got my back up, real sort of no-nothing children not far out of uni, coming to civilise the natives types. Thankfully I was a bit too much for them and they had to bring in a "big gun" as in Anna, who is a vastly experienced general practitioner, and has that golden skill of being able to talk to people on the level, rather than in the supercilious bank manager style!

when i first started working at Sure Start during one of our early team/strategy meetings i felt the need to gently point out to people "guys: we're not missionaries" lol

old mentalities in some social/health workers die haaaaaaard

I was actually quoting one of them old posts of yours at them and passing it off as my own material tbh! Might as well knick from one of the best!

oh man i'm just a grizzly make-it-up-as-i-go-alonger

all the horror stories I've heard about social workers have involved zealous fresh out of uni types

I suppose tbf they have to gain experience somehow and hopefully improve, as human beings and professionals. But god help us - don't ever let people like that make any important calls!

I got myself a very excellent advocate from the charity Carers Count (who had personally been through this same shit herself), have gone through quite an excruciating conference meeting with a mixture of grotesques and good ppl. The next-door neighbour who made the malicious complaint has actually done us a favour, because now respite has been upped to once a week (more time for me to get shit-faced and commit loud psychological terror against them with loud music), Alex has got Child At Risk (? or something similar) status - which isn't as sinister as it sounds - it means if I get ill or hospitalised there will be instant care help option for my partner with MS, who can't cope on her own.

They have come to the conclusion that my missus should never go anywhere outside the house with him alone again, which is fair enough. They got me to SafeSearch restrict his youtubing, which I thought was bollox, but I went along with it. When the arrogant chairman said Islamic State were targeting innocuous children's YouTube content I felt like shouting: allah jayid, brothers! Might not have gone down well. Also now Alex will get 8 hours a week with an escort taking him to whatever agreed leisure pursuit, whilst I gaffer-tape my bose to the neighbour's side of the house, and blast out the Merzbox for 8 hours straight!

It's been stressful as fuck, but the neighbour's report has been dismissed as bollocks and we got some more freebies - tldr versh!

also his 16-19 place at the NAS private school in Rotherham has been confirmed, so good times really.

Merzbu Akbar

My son decided he really likes this body sock thingy:

https://images-na.ssl-images-amazon.com/images/I/41Ler2-ROmL._SL250_.jpg

At first I wasn't sure whether it's a sensory/spectrum-y thing of if he just thought it was fun/funny. But it's of a piece with some other strong preferences he has (getting under blankets, always being in long sleeves even in summer).

Predictably, he has fallen down stairs in it twice. He's wiggly and it gets twisted round and he needs it repositioned frequently. And he brings snacks and drinks into it.

http://imagizer.imageshack.us/a/img922/5223/7tpKGX.jpg
That looks far more manageable than the room-sized Zorb suit we got alex a few years ago. It never left the house for H+S reasons and we ended up donating to the school's sensory room!

That looks awesome; I kinda want one! No way we'd have room for it in our 1080-sq.ft. house tho

even though he couldn't really use it outside and it was way too big for our 2 up 2 down house, he had a lot of sensory fun climbing on it, lying under it, bouncing on it etc.

When the arrogant chairman said Islamic State were targeting innocuous children's YouTube content I felt like shouting: allah jayid, brothers! Might not have gone down well.

Calzino your updates mean so much to me. Yours too, Mad Puffin. Thank you for all you share on this thread.

no probs JCLC !

yea i appreciate the updates fellow travelers

ymp we have one of those stretchy suits too! and yea what's up with the long sleeves in summer - both our boys have been feeling very anxious about shorts and short-sleeves. they are willing to wear them (especially if i'm wearing shorts too, they want everyone dressed the same) but we have to do a ton of explaining about dressing appropriately for the temperature

we had our younger son evaluated, he has some major sensory issues and some quirks that made us think he's on the spectrum too, turns out he wasn't but the dev pediatrician wants to evaluate him again in a few years. tbh i am kind of bummed bc we will miss out on the freebies, he totally needs as much help as our older one w/ an official diagnosis. lots of special needs families we know are scared of getting a diagnosis - "we don't like labels" is something we hear a lot, but imo the labels are good bc you get more information and more resources. why not take advantage of that when your kids clearly need help? you don't need to put a lot of weight onto it, it's just information and can clear a path forward, help you be a better advocate, etc.

that zorb suit is wild btw

It's complicated in my house, because I tend to be laissez-faire and let him wear what he wants. After all, _I_ get to wear whatever I want, and I wear long pants year-round.

My wife is more like "It's 90 goddamn degrees outside and you WILL wear a t-shirt and shorts, because that is what one does." She doesn't want him overheating, but I think she also feels like seasonally inappropriate clothing triggers unwelcome attention from other parents. And potentially from nosy authorities (for whom it may indicate neglect/abuse).

Anyway, if we put him in short sleeves and/or shorts he will scream for a minute, signing "shirt big! shirt big! pants big!" Sometimes he will throw the clothes he doesn't want out of his dresser. But he _does_ generally get over it, and when I see him later in the day he's forgotten about the tantrum and is happily playing. I dunno.

So hard to know what's a hill to die on, parentwise.

yea it got really bad a few summers ago, lots of tantrums, J wanted to wear this goddamn scarf every day! for a little while we were searching for really light linen pants and shirts that he could wear without overheating. eventually though he got over it

I've found as Alex has got older he will only wear relaxed fit XL tracksuit bottoms and baggy t-shirts. How comfortable he is dressed has got much more critical in recent years, because even the slightest chafing or discomfort can be a trigger for a meltdown in some circumstances. His current fave head-wear is a US stetson, similar to Clint's in The Good, The Bad... there is something about brimmed hats like trilbies + fedoras that help him self-regulate. But his maverick style of dressing has earned him many fans at school.

Stetson is grebt but you may want to gently steer him away from trilby/fedora as he reaches young adulthood.

I like how toddlers - especially girl toddlers - can decide they'll only leave the house in a construction helmet and a tutu (or whatever). I kinda miss that phase.

I don't think it really matters if he is wearing a trilby or a fedora into young adulthood. His behaviour is so loudly and effusively classically autistic he can't just quietly blend into a crowd and pretend to be a neurotypical, that is not happening, ever!

can we de-index this thread? I would love to talk a little more openly.

We would like our pupils, within the limits of their condition, to wear a school uniform whilst at school. Due to increasing costs we do not specify a badged uniform and so parents or carers are free to buy clothing from whichever supplier/retailer they chose, which conforms to the following guidance.

this is my fave school uniform policy ever!

I'm finding the CAHMS nurse very helpful. She is drumming some simple guidelines into my head that I used to know, but had forgotten. Just ideas about keeping communication simple and direct when Alex is at his most challenging, I had got into the bad habit of using too many words in recent years, or words that escalate a situation. For example a meltdown because he isn't going to the swimming baths for the 3rd day in a row, isn't helped by using the words "swimming baths" at any point because he will edit everything else out and just hear "swimming baths", so keep it to (subject) "finished" or a flat "no".

one thing I love about Alex being 16 is now him qualifying for Aqua Relax sessions at the swimming baths. No kids allowed, lights turned down, shit radio 2 playlist on low volume - but it sort of works, 60% youngish to adult age peeps with autism, the rest a mix of physically disabled, blind people, old bastards (but the nice version!), downs syndrome, and people that like avoiding normal people. The sense of chilled bonhomie and lack of shittiness is heartwarming.

that sounds really good

sometimes you can forget the cost (in units of psychic energy) of dealing with "normal people"! It is really good to forget this at times, honest!

Sounds wonderful, and you both really deserve it!

Was offered some respite hours with some terrible company called Bluewater. Their opening gambit was 2 on 1 personal assistants to take him swimming, of which neither would get into the swimming pool with him and this fucker seriously looked me in the face and said: are you alright with that? I asked him what actual use was 2 on 1, at the side of the fucking pool? are you actually serious? I politely fucked him off and then he phoned back with a compromise: 2 on 1 PA's, one goes into the pool and the other doesn't. I asked what actual fucking use is the other one, then? If there is an incident in the water are they going to jump in?

anyway while I've been taking Alex swimming, I met an independent, zero hours contract PA who is taking a blind man swimming, and asked him if he'd fancy taking Alex, through the same Direct Payments scheme, and he's totally game on and more importantly, I've seen him over the summer period, and his interaction with disabled ppl is A+

Fucking shit week last week. I went out to pick up my partner's prescription. When I returned Alex was very unsettled and screaming, she was lying on the kitchen floor in a pool of claret after he'd pushed into a kitchen unit, whimpering that she was dying. When the ambulance paramedics arrived they told us both to calm down, and pointed out that even minor head wounds can bleed a hell of a lot. I took a pic of the kitchen floor before I cleaned up and it looks like a classic murder scene. But all she needed was a cleanup and a bit of superglue!

omg calzino, so sorry you all are going through this, hope for better days to come

good times are coming, his 16-19 education is sorted at a brilliant NAS school. Some poor student was at first offered a place at the same school and then refused because they realised they didn't have a group he fitted into:( and basically has nothing r/n. I didn't mean it to sound unremittingly bad, it can always be worse!

that sounds v positive man. sorry for the drama ye went through this week tho.

i had a conference meeting today wi' a stenographer keeping a record, this total pumper of a chairman again and some decent professionals. They were blowing lots of smoke up my arse, so being subject to a section 47 is not always bad at all. Even though it started with a malicious and false complaint from a vindictive neighbour, it's final result has been lots of help that we actually needed!

I have an advocate from the charity called Carers Count, and she told me it is a common experience to go from being very defensive and butthurt to "well this isn't so bad now" in a few painful steps!

as a board we might have a bit of work to do on that tbh

sorry to hear you went through that calzino, hope things get better

https://aeon.co/essays/the-autistic-view-of-the-world-is-not-the-neurotypical-cliche

only had a quick skim of this but it's good

To autistic communities, the DSM’s descriptors can feel less like a neutral diagnostic matrix, and more like a colonial narrative. They fail to grasp the challenging aspects of autistic experience, and pathologise the positive ones.

fuck yeah

It really is a good piece, esp her tear down of the DSM.

"Recent research, engaging with autistic people as partners rather than simply observing them, suggests that we have badly misunderstood the interior life of autism"

Parents, carers, professionals, teachers .. even with an open mind and much goodwill are completely guilty of this. Lucky for the BBC she didn't critique The A Word, because that should be ripped to fucking pieces by somebody with autism. Excellent read.

She is otm about Higashida's The Reason I Jump as well.

Parents, carers, professionals, teachers .. even with an open mind and much goodwill are completely guilty of this

amongst other reasons, and Katherine May points towards this, neurotypicals are *not that good* at reading each others' interior lives, partly out of lack of genuine interest and empathy, partly perhaps because of evolutionary brain functions that are designed to make quick assumptions, largely out of the socially constructed aspects of human inter-relationships.

to be in role as "a parent", "a teacher" etc already sets parameters around the kinds of interaction that are likely when we engage with other people and whichever role they're currently engaged in

good article. has me thinking about how fragility gets stigmatized. i've particularly struggled for the past couple years about how much to allow myself to be desensitized. it's largely an academic argument given current circumstances, but i'd like to see more acknowledgment that there is a dark side to the valorization of "toughness".

Subject to a DBS check I've got a job supporting autistic adults. Every time u think I'm out they drag me back in :D

Hey that's great news my man, congrats!

That DBS check tho..

Lol it's fine, the only person I can't be trusted with is meself

Excellent news imo, even if at this point you might be thinking:here we go again ffs!

i love it really ;-)

Alex is having a late adolescence golden era rn. He's calmed down a lot, the self harm and violence are rare, he loves his new school. If it wasn't for a log jam of endless meetings with the paediatrician, occupational therapist, social workers, dentist, CAHMS nurse and school psychologist in the last week, I'd be almost tempted to say life is a piece of piss rn! 3-5 mile walks in the countryside every day are helping him self-regulate, I think previously I was overloading him with too many differing choices/activities - leading to frustration/meltdowns. Keeping it simple seems to helping him a lot, but also him getting past the initial nightmare of early adolescence might also be a factor.

that's great to hear. so much of the behavioural stuff seems to be about having the time to develop, and he's obviously got a safe loving environment so yeah, as adolescence starts to recede i'd think he'll become more at peace with the world and himself. apart from your everyday dickheads, obviously.

congrats NV!

Happy to hear that, NV. The work needs more Vagues!

thanks both of you :)

Autism services really does need more people like nv, because my experiences in recent times with a local respite centre was fucking depressing and disheartening to say the least. And this is a lot down to people who shouldn't be let anywhere near vulnerable ASC adults and children, being able to continue working despite being ill-suited and not fit for purpose for their job requirements.

unfortunately, like the vast majority of social care jobs, it's a sector that's undervalued and relatively low paid. of course that shouldn't be an excuse for workers with shitty values or attitudes but it's almost inevitable given that background. and of course disabled people and their families are near the bottom of any given government's priorities, they're one of the most consistently discriminated against groups of people in the modern age.

Even when i was going past the respite centre on a bus en-route to the dentist, Alex started sobbing because he thought he was going back there. It's almost like PTSD type symptoms. I was really going to give these people both guns at a meeting recently, about their shitty operation, inconsistencies in their report logs, just the overall shittiness of their whole operation! But quelle surprise - they never turned up and their phones were turned off and the story was that they accidentally turned up at the wrong venue that day!

I completely agree wages need to be much much better and social care jobs should command much more respect because they are so important for a civilised society. Some of the biggest wankers I dealt with are probably on a decent salary, and some of them on minimum wage as well tbf.

that sounds like the kind of safeguarding issue that social services and/or whoever's running that centre ought to be made aware of tbh

he'd built up a good relationship with one of their people, who was one of the good ones. At the time I thought him having experience away from home would be good for him. And at the time the missus had tried to OD and his behaviour was at the peak of how challenging he could be. It was quite good at first and I think he enjoyed the novelty of it. But in the summer they fobbed him off with lots of Sundays, when his fave person wasn't there, and obv there wasn't an interesting or stimulating environment being made for him, it was just basic containment, like a kennel. At the time him going there became part of a section 47, after some wanker of a neighbour said my missus with MS was beating him up. Ironically the last time he stayed there, when he came home he was in such an upset state + hospitalised the missus while I was picking up their prescription, by pushing her into a kitchen unit and splitting her nut open!

sorry rambling inarticulate post!

Nah it was perfectly articulate. It's not good enough is it?

Charity I'm gonna work for has an interesting-looking programme for helping people to reduce challenging behaviour btw, looking forward to learning more. It seems to be very person-focused.

good news from both worthy men itt

Hi all. This might not be the right place to ask as I know we tend to discuss more serious autism cases ITT. But has anyone had experience with Aspergers diagnoses? Was it worth it? Did it take a long time?

for an adult or somebody under 18?

imo we need an aspie/mild autism thread separate from this

for this autistic imperium is nihil reich for us!

when my son was diagnosed i think aspergers had already been phased out as the diagnostic criteria was redefined into the broader "autism spectrum disorder/condition". he probably would have received the aspergers diagnosis otherwise.

i think it does make sense as a broad spectrum. my younger son doesn't have a diagnosis and probably wouldn't receive one if tested but we certainly see autism traits in him

not much of a fan of the DSM in general but 5 is going to be fought over for years

fwiw i think obtaining a diagnosis - whatever your individual circumstances, needs, or challenges might warrant, can be really helpful and very much worth the effort. for us, having something on paper has been really crucial as we negotiate for resources, funding, and therapies. we've seen friends, sometimes w/ needs that are much greater than ours, get denied appropriate resources and school placements merely because their child didn't have an official diagnosis. it gives the institution/system a pass for not providing anything. booking evaluations and appointments takes time and money for sure, it's a pain in the ass, but i think it can be worth it at least for our US experience.

ime w/ both my son and myself (ADHD), i try not to get too hung up on the specific semantics or greater meaning of the diagnosis itself, knowing that the dsm is a flawed, limited, and changing manual. do i think either of us has a "disorder?" not really. but having some insight into some of the needs we have and being able to leverage something in a frustrating and bureaucratic system to better advocate for ourselves has generally been useful

that's way better than i could have put it marcos. i feel like in the UK at least it's always worth trying to get a diagnosis for a child, so much of what happens in our school system alone can hinge on "something on paper". my personal unprofessional opinion is that in adulthood it really is up to the individual - some people benefit from the process of diagnosis, it helps them to understand aspects of themselves and recognise that feelings of something being "wrong" come from a real place, it helps life make sense for them. for other adults (again talking about the UK) i don't know that the diagnosis really makes any difference to their sense of themself and society, and there are far fewer welfare and logistic advantages to being diagnosed as an adult i.e. services and support are thin on the ground. plus like you say, marcos, a lot of people don't think of this as a condition, just a part of who they are.

no such thing as "more serious" autism, just the spectrum. Obv some people on this spectrum need a lot more help with daily living because of the challenges of sensory, vestibular, language issues that can become very complex within neurotypical society. But that doesn't mean so called milder autism doesn't represent its own challenges. I think the Aspergers label has become a bit problematic, seeing as the cunt was a complete aktion T4 player. But I don't see any issues with people using this thread to talk about it.

complete aktion T4 player

Huh. Didn't see that mentioned in Neurotribes, but I didn't finish the book tbf.

I've been thinking quite seriously about seeking a diagnosis. My GP has agreed to give me a referral but asked me to write something about why I think I might have ASD and why I'm interested in a diagnosis. I was trying to explain on the phone that communication was an issue but didn't don't think I did a very good job of it. LOL.

They are reasonable questions and he needs something to support a referral, I guess. But it's proved hard for me to organise my thoughts about this, or work out what to say or what not to say. I mean, mapping a lifetime of experience of my neurology on to what I've learned about ASD is the answer to the first question, what other reason would there be? And why would I like to know if I'm right about that?

https://www.theguardian.com/world/2018/apr/19/hans-asperger-aided-and-supported-nazi-programme-study-says

read it and weep, unfortunately it's true :(

guys Robyn and Jamie from the Ouch podcast have their own show! it's called 1800 Seconds on Autism and i might have had something to do with it :)

calz et al i would love to know your thoughts.

https://itunes.apple.com/gb/podcast/1800-seconds-on-autism/id1444057570?mt=2

non-iTunes link here:
https://www.bbc.co.uk/programmes/p06sdq0x/episodes/downloads

I listened to a bit before the football started, Tracer. Very charming duo and so very highly intelligent and talking about jazz theory stuff I don't even understand after listening to it for decades! Good stuff though, and I do like them a lot.

yeah they are really good presenters full stop.

and I'm really glad you like it! i genuinely don't think there's anything else out there like it

Alex managed to have an MRI scan today. He needed general anaesthetic obv and I was quite concerned how this was going to happen, given that even flu jabs are an absolute nightmare. They give him a pre-med drink that he downed in one but then fought quite hard against, but eventually succumbed to. Then he woke up between the children's ward and MRI but he was still groggy and not strong enough to fight off the gas mask. It was all very autism aware and excellent work tbh. He was having a loud meltdown when we arrived and was quickly given a room to help him chill. There were a few bumps along the way, but it was at least a hundred times smoother than I was expecting it to be.

it's good when people actually know what they're doing, yay!

If I ever get massively rich I'm gonna start a scholarship program for dentists to specialize in working with people with autism and dementia. And will fund practices specifically designed for that.

I get the joke, it's funny, but I feel that the fact that the ambiguous 'messaging' bugs me is kind of an autistic thing. Or maybe it's just not a well thought out 'memme.

I mean, it literally appears to equate the claims of climate scientists with the arbitrary, coercive demands of greedy, sociopathic comedy mobsters, but vague 'context' is supposed to tell us that's not the intent.

Grim pic.twitter.com/xZ14XZh8AD

— Ireland Simpsons Fans (@iresimpsonsfans) December 29, 2018

You've got the single word "grim" accompanying the post, which on balance is probably more likely to be a comment on the climate rather than on the conduct of climate scientists, although I'm not quite sure why, against the history of those particular characters.

anyone got any good ideas for some classic autism friendly ps4 games? something colourful and fun, 3d world exploring type shit that isn't too demanding? god knows.

"spyro reignited trilogy" might be the sort of thing you're after?

popped this q on the ol group chat and they came back with knack (and its sequel), a platform game, & no man's sky, which is a (more grown up) exploration/survival space game, might be worth a look?

oh no wait apparently they're joking abt knack and its famously bad

I'm thinking Subnautica looks a good sensory/ambient/exploration world type experience, but it might have too much troublesome gameplay for Alex's liking.

A friend's son who is on the spectrum used to be really into Skylanders, the gameplay on that looked pretty straightforward but this kid was a bit younger than Alex, not sure about all the collectable toy nonsense that goes with those games

it's a shame that Stacking is only a ps3 game, i feel like they could be good

my pals also suggest abzu on an aquatic theme, journey and little big planet.

the only interactive stuff he ever got into was cause and effect sensory light/sound box on the ipad. And years ago there was a very simple gameplay-free indie pc game that was a blocky 3d island to explore, can't remember the name of that one but if someone did something similar with the ps4's capabilities it would be autism gaming gold.

abzu deffo looks the ticket.

thanks for some of the reccs folks.

do you know about Flower and Journey calz??

oh yes Flower looks perfect as well. I could imagine getting into myself tbh.

it's pretty amazing!