nddev

@nddev@c.im

** I'll shortly be moving to an instance that blocks Threads. **

I'm an oldish cis het software developer in the UK, married to Helen. I've recently discovered that I'm autistic.

If you have something in your profile, I'll generally accept your follow request. I don't always follow back; you needn't follow back if you don't want to.

Avatar is a genuine photo of a street sign, which says "Hill Street" in English and "Three Pigeons Road" in French, signifying absurdity.

This profile is from a federated server and may be incomplete. Browse more on the original instance.

GreenRoc, to random
@GreenRoc@mastodon.social avatar

#ActuallyAutistic
#AskingAutistics

Can anyone link me to a study or a chart something to prove to some paper pushers in my life that the average life expectancy for autistic people is at a set age?

I'm 46 now and I believe I am past the average life expectancy, and some paper pushers asking me to 'prove' my need for assistance, from a doctor, renewed annually... which'll cast off several years of my life in stressful experiences to upkeep.

What's the age, asking for real life needs.

nddev,

@GreenRoc
I've previously read (and said here) that #ActuallyAutistic people die, on average, 16 years early, but this recent study suggests that that's no longer the case, at least in the UK, if it ever was:

https://www.ucl.ac.uk/news/2023/nov/premature-death-autistic-people-uk-investigated-first-time

We do lose a few years on average, but it's nothing like 16. I'm delighted that the older figure seems to be wrong.

OTOH, this won't bolster your claim for assistance. I'm sorry about that. But can't the bureaucrats distinguish between someone who needs long-term help and someone who's at death's door?

@actuallyautistic

nddev,

@GreenRoc @actuallyautistic
I'm really sorry to hear this.

Well, the study I've quoted was specific to the UK, and so it doesn't directly apply in other countries. But, from what you've said, if you want to persuade them about life expectancy, you might do better to tell them about close family history than about autistic people in general.

If you want the older, 16-year figure, it's easily found:

https://www.bmj.com/content/352/bmj.i1615

Interestingly, that's based on research carried out in Sweden. It makes me wonder how far the drop in life expectancy is caused by social conditions and available medical care.

nddev, to Autism

BBC News - #NHS cannot meet #autism or #ADHD demand, report says
https://www.bbc.co.uk/news/health-68725973

Personally, I blame the #ActuallyAutistic hashtag and the @actuallyautistic group for helping people like me discover that we're autistic. ๐Ÿ˜†

nddev,

@brandon @actuallyautistic
I have several bitty thoughts here:

  1. The CDC figure is specifically for boys. Not everyone agrees, but the prevalence of autism in women and girls is said to be lower than in men and boys.
  2. The BBC's figure may just be out of date. The excellent article here <https://mastodon.me.uk/@theaardvark/112213553454522933> (linked indirectly so that you can boost if you want) updates it.
  3. Are we talking about people who are #ActuallyAutistic or about people who have a formal diagnosis? The BBC doesn't say, but, as we all know, many autists aren't formally diagnosed.
nddev, to Autism

Helen and I have recently watched the first three episodes of #TheDropout, a drama about #Elizabeth Holmes and #Theranos. (No spoilers, please!)

From the first minutes, we see strong signs of #autism. Holmes is tactless and blunt; she stims to music; she rehearses speech before the bathroom mirror; she engages in echolalia; she's out of her depth socially; she sometimes dresses inappropriately; she's obsessed with technology; she has genuine compassion but struggles to show it conventionally; and, in episode 3, she has a meltdown. She's not a great advert for #ActuallyAutistic people โ€” let's face it, she was never likely to be. But, on the bright side, she thinks quickly and makes startling leaps of creativity, which are critical to her progress in business. And the series does humanise Holmes and show the intense pressures that led her to commit fraud.

At least so far, although #autistic traits are central to the storyline, no one's mentioned autism at all. I wonder if that reflects reality (she never got a diagnosis) or the programme-makers are worried about litigation.

@actuallyautistic

mattotcha, to Futurology
@mattotcha@mastodon.social avatar

Autism Can Boost Cognitive Performance, And We May Finally Know Why
https://www.sciencealert.com/autism-can-boost-cognitive-performance-and-we-may-finally-know-why #brain #CognitivePerformance #autism #NeuralNoise #StochasticResonance

nddev,

@mattotcha
Adding #ActuallyAutistic and @actuallyautistic

lexx3000, to actuallyautistic German

@actuallyautistic Can someone explain the logic of 'autism speaks' and 'autism parents' going together with the general at least internet assumption of being autistic automatically means your parent is autistic.

nddev,

@ants_are_everywhere @lexx3000 @actuallyautistic
I was about to say much the same thing:

https://www.uclahealth.org/news/new-genetic-clues-uncovered-largest-study-families-with

"Autism is highly heritable: It is estimated at least 50% of genetic risk is predicted by common genetic variation and another 15-20% is due to spontaneous mutations or predictable inheritance patterns. The remaining genetic risk is yet to be determined."

(Some of the language on that page is not as we might prefer it to be.)

olena, to actuallyautistic
@olena@mementomori.social avatar

On one hand, itโ€™s nice to see that we can have noice-canceling headphones, selective earplugs and other kinds of solutions to help #autistic and other #neurodivergent folks to reduce sensory overload in public places, but I canโ€™t help but think that we should address the problem from the other side: to not create that overload to begin with.
Ok, I get the need for bright light in a shop: you really want to see what youโ€™re buying, you want to choose a fruit/veggie without signs of spoiling, be able to read the label clearly etc.
But all that loud music? Is there really any value in it for the stores? Why do they keep playing it? Were there some actual real studies that have shown that putting on music increases sales?
Like, I have seen many times(and was myself) people leaving store sooner, even without the things they went for, because they couldnโ€™t stand that loud music anymore, but I havenโ€™t seen anyone actually staying in a shopping mall longer because they liked music or something.
So, is there any actual profit for stores in it, or are they just doing that because everyone is used to it?
Does also anyone know if there have been any studies/works on the sensory overload modern cities put on people and ways to reduce it without making things harder for other members of society?
@actuallyautistic

nddev,

@olena @actuallyautistic
On Saturday, after a quick change of heart, I literally drove past #Sainsbury to get to #Tesco because Tesco's #BackgroundMusic is less bad. I'm sure Sainsbury knows its business and has optimised everything to a T, but I cannot be doing with it.

nddev,

@callunavulgaris @olena @actuallyautistic
Our local Tesco has two quiet hours a week; the one I use starts at 9am on a Saturday. Unfortunately, I'd missed it by the time I knew I needed to go shopping on Saturday. ๐Ÿ˜Ÿ

hosford42, to actuallyautistic
@hosford42@techhub.social avatar

Requirements to put in a job description to discourage or filter out autistic people:

  • Comfortable with ambiguity
  • Strong people skills
  • Good culture fit
  • Multitasking
  • A fast-paced dynamic environment
  • Bachelor's degree or better

I see these things and think you don't want my >30 years of programming and machine learning experience, or my problem-solving skills and comprehensive knowledge that had people mistaking me for one of the team's PhDs, or my solutions that have proven patent-worthy. Your loss.


@actuallyautistic
@neurodivergence

nddev,

@russellmcormond @Uair @actuallyautistic @neurodivergence
And, for many in the UK, "Republican" has darker connotations.

nddev, to actuallyautistic

An explanation for your friends and loved ones of why #ActuallyAutistic people can't find things and what they can do to help us:

https://www.thearticulateautistic.com/why-your-autistic-loved-one-cant-find-objects-right-in-front-of-them/

@actuallyautistic

nddev,

@FrightenedRat @actuallyautistic
I've just discussed your question briefly with Helen, who's allistic. She didn't give me a direct answer, but we did arrive at this conclusion: when I'm searching for something, I have a picture in my mind. If the object doesn't match the picture -- if it's a different colour or in a different orientation, or if it's partly hidden -- then I often don't see it.

She, in contrast, claims to search at a more abstract level. So, if she's scanning the desk for a pen, any pen will do: she'll find it, no matter which way round it is (left-to-right, front-to-back, or standing upright in a mug) or which colour it is.

Uair, to actuallyautistic
@Uair@autistics.life avatar

@actuallyautistic @Atheist @AtheistIntelligence

This article is funny. It wonders why western thought is so pessimistic about human nature without once noticing that jesus tells everyone they were born evil before they were old enough to reality check their information.

https://www.theguardian.com/books/2020/may/09/the-real-lord-of-the-flies-what-happened-when-six-boys-were-shipwrecked-for-15-monthshttps://

nddev,

@Uair @actuallyautistic @Atheist @AtheistIntelligence
That link's not quite right. This fixes it:

https://www.theguardian.com/books/2020/may/09/the-real-lord-of-the-flies-what-happened-when-six-boys-were-shipwrecked-for-15-months

nddev, to actuallyautistic

I mentioned the other day that getting a U-shaped #BodyPillow had improved my sleep. This graph shows the kind of sleep I'm getting now. The improvement is extraordinary. Until now, I averaged 5 to 5ยฝ hours of variable-quality sleep.

This is the kind of body pillow I'm talking about. Obviously, you don't have to buy from Amazon if you don't want to.

https://www.amazon.co.uk/s?k=body+pillow+u

I'm copying @actuallyautistic and #ActuallyAutistic because I think this is a sensory thing and because many autists sleep badly.

Susan60, to ADHD
@Susan60@aus.social avatar

As a teacher, I know that windy days result in โ€œunsettledโ€ students. Years ago I met a guy on a blind date at a seaside location for a coffee, on a very windy day. I think he found me to be โ€œa bit muchโ€. ๐Ÿ˜ #ADHD #AuADHD @actuallyautistic

nddev,

@Susan60 @actuallyautistic

If you'd met him on a suspension bridge on that same windy day, he might have seen you in a more favourable light:

https://en.m.wikipedia.org/wiki/Misattribution_of_arousal

(You'll be aware of this experiment, of course, but others may not be.)

JoePajak, to random
@JoePajak@mstdn.science avatar

โ€˜Six out of 10 people who died from COVID between March and July 2020 were disabled, according to the @ONS.โ€™ @janemerrick23 @theipaper. @covidinquiryuk @NHSEngland @PositiveaboutDS
@mencap_charity @DHSCgovuk @NICEComms @Autism @DisRightsUK @sensecharity

https://inews.co.uk/news/politics/thousands-of-disabled-people-died-after-covid-treatment-withheld-inquiry-to-probe-2970333?ito=twitter_share_article-top

nddev,

@JoePajak
Adding @actuallyautistic #ActuallyAutistic

alexisbushnell, to actuallyautistic
@alexisbushnell@toot.wales avatar

Fellow @actuallyautistic folks, what are your experiences with and feelings about smart watches?

I realise that's a very broad question but I don't want to skew the replies by sharing my experience and why I'm asking!

nddev,

@alexisbushnell @actuallyautistic
I bought a #PineTime because it's #OpenSource and it respects my #privacy by keeping my private information on my phone rather than sending it to the cloud to be abused by marketers and heaven knows who else.

I like it as far as it goes, but it's pretty basic. I wish there were a much more full-featured #SmartWatch that was open source and respected my privacy.

The main reason I wear it is to count footsteps. The actual numbers don't matter at all: the watch is really just a reminder to get off my backside and keep active.

18+ MnemosyneSinger, to actuallyautistic

@actuallyautistic #ActuallyAutistic

Does it help you with autistic things? How so?

For me it not only helps with pain, anxiety, and depression but it also seems to help me interacting with people and with what I think might be selective mutism.

Example, I went to the dentist three times since November. The first two times, besides being a sensory nightmare, I was unable to speak more than two words to the dentist. The third time, I smoked some cannabis before the appointment and was better able to cope with the lights and sounds, be polite to the dentist, and thank her for recommending a water flosser.

Before that I had been going back and forth on whether I am autistic but on the way home from that appointment I had the realization and the dots all connected: the rarity of me interacting with people unless I have to because of difficulty talking, my dislike of phone calls for the same reason, my borderline agoraphobia and dislike of cars both having to do with sensory hypersensitivity, the fact that I am so much better at communicating in writing than in person because I have more processing time, the list goes on. It just all clicked at once, I think another effect of the cannabis being the ability to see the big picture not just the details.

People look down on stoners and have all kinds of misconceptions about it but honestly, I would use it every day if I could. It helps me so much.

Anyway, I can't be the only one. In my state, autism is on the list of qualifying conditions for medical cannabis. So, I'm curious. How about you?

nddev,

@MnemosyneSinger @actuallyautistic
isn't legal here, so I've not tried it. But I started taking soon after it became available in health food shops, and it really helps me. Helen was initially sceptical (CBD? Cannabis? That's drugs!) but has since become completely supportive and said CBD has made me easier to live with.

One of the difficulties with CBD here is that, because it's regulated as a and not a , there's no guarantee of quality. According to the BBC series "Trust Me, I'm a Doctor", some CBD supplements contain much more or much less CBD than is marked on the label, and some contain none at all. Combine that with the placebo effect and it's really hard to know what you're taking.

Dr_Obvious, to actuallyautistic German
@Dr_Obvious@chaos.social avatar

@actuallyautistic
If you lived in the 90s there is small chance you never stumbled over the magic eye. These pictures of grainy shapes and colors and if you stare the right way you see something in 3D.

nddev,

@Dr_Obvious @actuallyautistic
BTW, anyone who enjoys magic eye pictures can follow @magic_aye to get a regular supply. ๐Ÿ™‚

FrightenedRat, to actuallyautistic

Any views on the #iSense cinema experience for #ActuallyAutistic people?

I'd quite like to see Dune II on a big screen, but I'm a bit scared of the overwhelm.

Usually it's only sound overwhelm that affects me & I'm okay with the visuals on regular screens showing 2D films (though I don't get on well with 3D). So I'm hopeful the extra screen space wouldn't have too much of an impact.

But than, also, is it worth the extra money?

@actuallyautistic

nddev,

@Tooden

I'm sorry you both had such a bad time. ๐Ÿ™

Perhaps #cinemas could do what supermarkets do, and have times for reduced sensory stimulation. That might mean turning the volume down and leaving the theatre lights on low to reduce visual contrast. They could also avoid selling noisy food, such as sweets in cellophane wrappers, because it's so distracting.

@FrightenedRat @actuallyautistic

Jobob, to actuallyautistic
@Jobob@mastodon.me.uk avatar

So, a question for undiagnosed late realised @actuallyautistic folks.
Your work makes a change and it saves them money but plays actual havoc with all of your traits that you're still learning to recognise as autistic. You tell them about the impact it has on you and they completely dismiss your complaint, saying its fine for most people.
If there was a diagnosis it'd basically be indirect discrimination. But there isn't, and no prospect of one any time soon.
What do you do?

nddev,

@Jobob @actuallyautistic

This question is relevant to me, too, because I've recently discovered my own autism and I have no formal diagnosis. Fortunately, my employer is flexible enough to give me the accommodations I need.

Obviously, your rights and your employer's obligations will depend on local laws. Your profile strongly suggests that you're in the UK, so this is suggestive:

https://www.forbes.com/sites/drnancydoyle/2023/02/10/neurodiversity-5-things-employers-need-to-know-about-self-diagnosis

Point 1 is the most relevant part:

"1. Diagnosis Is Not Essential For Disability Protection.

UK disability law frames disability as chronic difficulties in normal day-to-day activities lasting 12 months or more. It does not provide a long, exhaustive list of what is covered or not covered. Therefore, if you have an employee who is experiencing chronic difficulties in normal working activities related to communication (e.g. literacy or following instructions) memory or learning, you might do better to assume disability and act protectively."

Therefore, if I found myself in your situation, my next move might be to read around the subject on the excellent Citizens Advice website:

https://www.citizensadvice.org.uk/law-and-courts/discrimination/

Then, if I thought I might have a case, I'd probably give them a call.

I hope this works out well for you.

eo, to actuallyautistic
@eo@dads.cool avatar

@actuallyautistic what's your favorite drink, either alcohol or non. And your fav pick-me up, whether coffee, tea or smoothie.

nddev,

@eo @actuallyautistic
My favourite drink is good cider (not the over-sweetened dross that passes for cider nowadays). I could drink it all day, every day, just for the taste. That would be an incredibly bad idea, obviously, so I tend to drink other things when I'm drinking alcohol at all.

The drink I have most often (as opposed to my favourite) is decaffeinated green tea. I drink at least half a gallon a day, partly for the ritual of making it, partly for the break from work, partly for the opportunity to make a hot drink for Helen if she's around, and partly because my kidneys aren't brilliant (it's a common #ActuallyAutistic comorbidity).

nddev,

@caointeoireacht @actuallyautistic @eo

Ooh, mead. I used to think I hated mead. Then I tasted some at a wedding, just to be polite, and I learnt that there are two kinds: the one I don't enjoy is made from honey, but apple mead is delicious.

Reader, a second glass was consumed that day. ๐Ÿ˜„

nddev,

@Uair @eo @actuallyautistic
I'm not a nephrologist, so I can't comment authoritatively, but I don't believe that pale urine guarantees your kidneys are working well: it just means you're well hydrated.

Recent research shows a genetic link between autism and chronic kidney disease:

https://pubmed.ncbi.nlm.nih.gov/33340339/

"There is emerging evidence that ASD and kidney disease have some overlaps with genetic copy number variants and environmental factors contributing to shared pathogenesis."

nddev,

@Dr_Obvious @eo @actuallyautistic
I hadn't heard of that. Thanks for the recommendation. I'll be on the lookout for it.

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