What can you tell me about Autism?

that was a good outcome anyway calz hope ye enjoyed the pool afterwards

often to people with autism the pool is number one in terms of meeting their sensory needs, self regulation etc next to vestibular activities, so a good time is almost always guaranteed :)

but I suppose being in water is the ultimate vestibular activity tbf!

Boiler engineers, invadin' my space, puttin' test gear and oily rags on food preparation surfaces. Thankfully not too much small talk. Not one of my fave things but preferable to carbon monoxide poisoning I suppose.

I'd be sorely tempted to take the carbon monoxide poisoning over some Charlie Mullins bantz for real!

https://www.mirror.co.uk/news/uk-news/bus-drivers-hit-christmas-jumper-21002895

this has really pissed me off and sums up how badly trained and ignorant about ASC children the drivers and escorts for special needs transport often are. When many parents of kids with autism won't put up seasonal decorations because routine and low stimulation environments can be crucial for autistic children to be able to self-regulate and stay happy. This fucking idiot goes running to a tabloid because his boss tells him not to decorate himself and the van.. got so much contempt for this thick cunt. Heard so many stories about similar idiots over the years. One dickhead driver kept causing a kid to have a meltdown by putting the radio on too loud, should never even happen once.

A while ago, someone in my social orbit (with an autism spectrum child) posted something about how special-needs parenting resets your expectations of accomplishments.

Other parents are like "my child won a soccer trophy" or "my child is on the honor roll" or "my child plays Mozart flawlessly" or "my child got into Harvard." Special needs parents have things that are more like "my child put on socks" or "my child ate a new food" or "my child said the word 'cat'."

For me, this is one of the most difficult things to express. Something like "we got through the grocery store without screaming" or "we went to a restaurant and didn't need to leave early" is an achievement. For many/most people, it's just something you do. And if you can't, there's something wrong with you as a parent. If you'd raised them right you wouldn't have a problem. If you'd done your job correctly the kid would've behaved.

Sorry for the bathos; we just got back from frickin Olive Garden. Felt like triumph. It has tablecloths and silverware! Wouldn't have attempted it a year ago.

And of course this wasn't at all what I envisioned. At my son's age I suppose I was at least expected to politely try sushi or going to the philharmonic or learning ballroom dance or whatever. We're still working on potty training.

Sometimes just the smallest steps forwards can feel like they've a huge breakthrough. Like I can recall him learning to ride a bike at 13, or learning to stop next to roads and wait to cross at 11.. some of these things might seem small to parents of neurotypical kids .. but they are major progressions. My lad is 17 turning 18 next month and the last few years have been the toughest.

The problem I have now is his recent weight gain. Because when his behaviour was at its most challenging and he was being violent and self-harming, as a bad coping mechanism I tended to let him have milkshakes and snacks when he requested them as they seemed to be a part of his way of self-regulating and remaining on an even keel. He's much calmer now but putting him on a stricter diet and banning some of the high sugar drinks he's become accustomed to have resulted in some quite angry rages at times. I took him for a glucose/urine test for type 2 diabetes last week and they haven't been back in touch with me which hopefully means he hasn't got it. But that is how worried I've become about his weight.

https://pbs.twimg.com/media/EQxOCMXXYAA5EVp?format=jpg&name=medium

Alex turned 18 last week and is looking good, no signs of glucose/type 2 diabetes in his urine and I've been doing increasingly long as fuck walks with him to help keep his weight down.

hooray for walking. it is the elixir of life.

you ain't wrong

good stuff <3

because he favours low stimulation environments he often prefers going out at night, but i love the night!

Good to hear, calz

Good gents, would walk with

https://www.alfiekohn.org/blogs/autism/

kinda long and technical but good stuff and feeds into my other concerns/interests about pedagogy and parenting in general

ABA always makes me think of something on the tv I saw 10-15 years ago about a man with autism who grew up in the late 60's early 70's I think. There was vintage footage of somebody the parents paid a lot of money to yell at him a lot when was a kid and this was seen as some pioneering radical aggressive intervention type treatment that was the way forward at the time. There was an interview with his brother who basically said even when he was young at the time he basically knew it was cruel and a load of bollox and had no discernible affect on his behavioural problems which abated as he got older anyway. It was a very full of shit American academic type who was the torturer in chief, although I've got vague memories of the program, the old footage of her yelling at him because he is non-verbal and not responding to some prompt struck me as vile cruelty.

i occasionally used to use the phrase "well, you can train a dog" when people were discussing whatever intervention they'd heard about.

we're still a very long way as a society from getting our heads around the idea of disability as a social formation, or from thinking in terms of difference instead of deficit. partly because to me it raises a ton of questions about what it is to live and to live well, what the point of anything is, and ain't nobody got time to be worrying about that stuff. apparently.

you mention dog training. I was talking to an escort with an adult with autism at Ponds Forge leisure pool. He told me the very well off parents of this lad had him "dog-whistle trained" In complete disbelief I said WHAT? He said "Dog-Whistle Training, I'm not joking" without expanding on it.

i can believe it :(

i guess in fairness - and as i say, this goes for parenting in general - some people will go to ridiculous-looking lengths to protect their children (or to convince themselves that they are protecting their children) and i wouldn't want to make blanket statements about the kinds of interactions that might be helpful for individual people. but so many of the interventions with autistic children in particular seem about "normalization", trying to teach people to pass as less autistic or something, and that's really sad and contributes to a society that can't accept individuality and autonomy for neurodiverse people.

something something replication crisis

That hadn't even occurred to me but yeah of course

Some arsehole neighbour phoned the police on me tonight because Alex was having a loud autistic meltdown. At least it was amusing when he walked out of his bedroom stark bollock naked when two WPC's were walking up the stairs to check I'm not some domestic abuser to check on my partner who was in bed! But it isn't funny really, it's just a form of harassment. The cops were ok when they realised the situation, but i sincerely hope the cunt that phoned them dies very painfully, very soon.

Argh, I'm sorry that someone did that to you guys. It does sound funny-ironic, but also at the same time very frustrating.

I'd be very tempted to order or print out a bunch of leaflets from the National Autistic Society and passive-aggressively drop them through all the neighbours' letterboxes with big yellow post-it notes saying "an autistic person lives nearby, chill the fuck out". You never know, someone might learn something.

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

when this Rona is sent packing or at least has some advanced treatments that reduce it's ability to wreak so much long term damage, then he will be able to self-regulate much better when more activity options open up again like going swimming and travelling on buses and trains to places. Because as much as routine is important to him, I think the narrow options available to us now (and the last 6 months) are boring him shitless! School (a private NAS school with a very well considered social distancing regime and small classrooms etc) starting again in a week and a half should help.

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!