What can you tell me about Autism?

i once got visited by the fuzz at the summer playscheme i was working because somebody had reported a distressed, half-naked teenager being chased around the empty school playground. in that particular case i'm happy to write it off as a concerned citizen, lol. i'm assuming your neighbour's just a dick tho.

(On a purely personal note, I wish more people understood what meltdowns were, and how *not* to react to them.)

― Extractor Fan (Branwell with an N)

do you know any resources?

I mentioned one of the best resources, in my post: https://www.google.com/search?client=firefox-b-d&q=national+autistic+society+meltdowns

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.