What can you tell me about Autism?

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!