What can you tell me about Autism?

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.