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 If anything autistic people are known for being exceptionally quiet and withdrawn.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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bless the NHS but...

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

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

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

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

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

that's absurd!"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Best to you Chinaski

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

:)

Good to hear

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

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

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

Arbitrary is exactly what it is

Glad to hear, calzino

That's great to hear, calzino.

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

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

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

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

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

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

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

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

so i guess i should talk about this

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

i took her up on her offer.

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

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

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

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

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

sorry, a purely carer-centric post here

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

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

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

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

Genuinely happy for you and your son Calzino.

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

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

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

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

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

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