What can you tell me about Autism?

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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!

calzino, Thursday, 8 October 2020 07:52 (three years ago) link

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

1000 Scampo DJs (Noodle Vague), Thursday, 8 October 2020 07:55 (three years ago) link

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.

calzino, Thursday, 8 October 2020 07:59 (three years ago) link

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!)

Branwell with an N, Thursday, 8 October 2020 08:07 (three years ago) link

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!

kinder, Thursday, 8 October 2020 08:16 (three years ago) link

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.

calzino, Thursday, 8 October 2020 08:17 (three years ago) link

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

Branwell with an N, Thursday, 8 October 2020 08:21 (three years ago) link

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?"

J Edgar Noothgrush (Joan Crawford Loves Chachi), Wednesday, 14 October 2020 19:47 (three years ago) link

one month passes...

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!

calzino, Sunday, 6 December 2020 20:14 (three years ago) link

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

Uptown Top Scamping (Noodle Vague), Sunday, 6 December 2020 20:17 (three years ago) link

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

calzino, Sunday, 6 December 2020 20:26 (three years ago) link

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.

calzino, Sunday, 6 December 2020 20:55 (three years ago) link

eight months pass...

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.)

Noel Emits, Monday, 9 August 2021 10:28 (two years ago) link

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.

Noel Emits, Monday, 9 August 2021 10:33 (two years ago) link

ten months pass...

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?

Kate (rushomancy), Tuesday, 5 July 2022 15:59 (one year ago) link

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?

sarahell, Tuesday, 5 July 2022 16:16 (one year ago) link

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.

Kate (rushomancy), Tuesday, 5 July 2022 16:19 (one year ago) link

four weeks pass...

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.)

Noel Emits, Thursday, 4 August 2022 17:13 (one year ago) link

three weeks pass...

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.

calzino, Saturday, 27 August 2022 08:48 (one year ago) link

nine months pass...

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!

calzino, Thursday, 15 June 2023 07:57 (ten months ago) link

seven months pass...

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

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 14:55 (two months ago) link

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.

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 14:57 (two months ago) link

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.

Sane clown posse (Ye Mad Puffin), Wednesday, 14 February 2024 15:16 (two months ago) link

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.

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 17:19 (two months ago) link

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

I would prefer not to. (Chinaski), Wednesday, 14 February 2024 17:21 (two months ago) link

Best to you Chinaski

Sane clown posse (Ye Mad Puffin), Wednesday, 14 February 2024 17:31 (two months ago) link


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