Saturday, 7 September 2019

Guidelines on how to work, play and live with autistic people.


Hello. Are you #autistic? No? Cool. Now then, here are a few guidelines for how to work, play and live with #autistic people. I hope they prove useful and believe me when I say that taking care here may save lives. Please share, especially if you are not autistic yourself /

1. Do not challenge or question a person's diagnosis of #autism, unless you are very close and well meaning. There is little more hurtful than this simple act of distrust.

2. Do not assume we will have some unusual or special skill or ability. This is ignorant and also kinda silly. Also, don't judge us on this. #autism

3. Don't assume that #autistic people also have learning disabilities. We don't, necessarily.

4. There is no such thing as 'looking #Autistic so never say we don't 'look autistic'.
Seriously.

5. Do not expect or demand us to look you in the eye. Do not think less of us if we don't look you in the eye. *accept* that we may not look you in the eye. #autism

6. Don't touch us if we haven't signalled in some way that we want to be touched. Even if you're being nice, it's too risky a strategy as #autistic people can be extremely sensitive to unwanted touch. Feel like this is pretty good advice generally.

7. Don't assume that all #autistic people are white male children. #autism is widespread across the whole population.

8. Allow #autistic people time to think and respond when you ask them a question.
Do not assume you're not getting an answer.

9. Invite #autistic people at work to speak but do not be all weird and offended if they decline.

10. Be cool if an #autistic person leaves a situation abruptly or ends a conversation suddenly. They may need space or a recharge (almost literally)

11. Be cool if an #autistic person is unwilling to shake your hand, kiss your cheek, hug you, hold hands... Don't take it personally and try not to get upset.

12. Don't demand we eat what you want us to eat. Be accommodating. Don't be offended if we decline your cake or dip. #autism

13. Dont stop is engaging in our interests. By all means gently nudge us towards new, suitable ones if you think we'd like them, but don't be pushy! #autism

14. Please don't film us or take photos when we #Meltdown. It's cruel and unreasonable. Don't threaten to do this either. Don't tell us off for our meltdowns. #autism

15. Please do understand that we will be very stressed, a lot of the time, and that this may be hidden very successfully. This is exhausting for us. #autism

16. Please don't assume we have no emotions. #autistic people are actually likely to feel emotions, very strongly, which can be disorientating.

17. Be aware that there is a big overlap in the #autism community with the #LGBTQ community and that these communities are pretty close knit a lot of the time, so be sensitive.

18. Forgive us if we misread or misunderstand a situation - there's an extremely good chance we're already beating ourselves up over it. #autism

19. Be patient with us as #autistic people may be very disorganised, forgetful (almost to a fault) and bad at planning. This does nit mean we're incapable.

20. Our favourite interests are *extremely* important to us. Please don't be dismissive or openly disinterested. Obviously you don't have to indulge us but it is nice sometimes, and you may learn something! #autism

21. Please be aware that #autism can come with comorbid physical conditions that can mean we struggle sometimes quite badly. These conditions may not be visible.

22. Please be extra aware that #autistic adults may well have developed PTSD from repeated instances of advice like this not being taken, and may need extra support and care.

23. Please don't patronise #autistic people, it's not nice.

24. Don't be all weirded out and embarrassed if an #autistic person talks with an unusual tone, volume or pitch. Just accept and leave us be.
 
25. If an #autistic person is having a meltdown, then back off and if you are the cause of the meltdown, back right off. Try to make safe the area but don't be demanding of the person.

26. Check in on #autistic people, via text or whatever. They may be pretty crap at keeping in touch.

27. Give very clear, unambiguous instructions when that's what you need to do. Make it very clear when something must be done by. #autism

28. Don't 'hint' or 'imply' important things. Don't leave #autistic people to read between the lines as that probably won't work out to well for you or them, and we really hate screwing up.

29. Sarcasm can be OK in non-pressured situations, but generally may not work.
Male banter, mock aggressiveness can be very difficult for #autistic men to negotiate.


30. Don't assume @autistic people have no sense of humour. I'm autistic and I'm hilarious.

31. Be aware that #autistic people may have a very dark sense of humour and they may use it out of discomfort. Chandler Bing is very much like us in this respect... @MatthewPerry

32. Some #autistic people are extremely artistic and creative. #autism doesn't mean science.

33. Don't assume that all #autistic people have the same favourite interests. There are some commonalities though.

34. Bear in mind that #autistic people may use alcohol to help them cope in social situations. Don't encourage over-use please!

35. Your #autistic colleagues may not want to socialise as frequently as the rest of you. They may prefer to have lunch or break alone. Don't be offended by this.

36. #autistic people may wear the same clothes a lot. Please don't assume they are dirty or unwashed.
37. Please don't sit right next to #autistic people in tight spaces like in audiences, on trains etc unless necessary. I once sat at a Manics gig with an empty chair each side and it was bliss.

38. Do not discourage or tell off #autistic children for having fun lining up their toys or organising things into categories. You may not see this as fun, but they do, so back off.

39. Please avoid talking of cures for #autism around #autistic people. You may mean we'll but many, if not most of us view our #autism as an inherent part of our personalities and psyche. Curing this sounds harsh.

40. Similarly with talk of prevention, treatment and screening. All unhelpful and quite offensive for #autistic people.

41. If you are a parent to an #autistic child, please do not disregard the experience of
#autisticadults or assume we're somehow 'not autistic enough' to listen to.

42. Please don't conflate #autism with learning disabilities. They can frequently exist together, but autism is not technically a learning disability at all.

43. Do not change plans abruptly with #autistic people unless it genuinely can't be helped. We tend to mentally prepare for things in advance and a change can spoil and waste that.

44. Don't use the fact we're #autistic to try to get away with gaslighting us. This is horribly common and really, viciously unpleasant. We are generally quite trusting of people we know and like, so that can destroy us.
• • •
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Monday, 2 September 2019

Autism and Health


Autism and how it affects our general health - a thread to try to raise awareness of the difficulties #autistic people face. Please share widely. #thread #Neurodiversity

A statistic that is genuinely astonishing - and not in a good way - to do with autism is the average life expectancy. For people with 'mild autism' (a misnomer: 'ability to mask in public is more accurate) this stands at around 54. We are 9 times more likely to kill ourselves.

This kind of takes the breath away. I'm 36, so in only 18 years I'll be at my neurotype's average death age. That sucks. Obviously it's clear that suicide has a role to play here, and mental health for #autistic people can be very poor, but what else is a factor?

(Another vital thing to point out before I move on - those #autistic people with comorbid learning difficulties have an average life span of only 36-40. Let that fucking sink in).

#autism has a tendency to throw up all kinds of related problems, which is to be expected considering we are trying to run software on a completely differently operating system to neurotypical people (you ever messed around with Linux?) Self care is one area of interest.

#autistic people can be a bit dishevelled. I certainly am these days, but this wasn't always the case. Back before burnout, and before the complexity of parenthood stripped me of spoons, I maintained myself pretty well. Sort of. Maybe.

I don't know why this is the case, but I can suggest that a combination of chronic stress, distraction with our interests, lack of being able to view ourselves from outside and a lack of energy all conspire a bit. #autism takes up a lot of bandwidth, so shaving can do one.

So you may notice some #autistic people may be looking a bit shabby. Try living in our heads and give us a break, yeah? But this can lead to slightly more problematic areas.

Apart from maybe not showering for a bit because that Lego city won't build itself, its worth remembering that a sudden slide in self care is a warning sign of issues such as depression, which affect #autistic people at a rate much higher than the general population.

But it can be much worse. #autistic people sometimes (and I certainly include myself in this) have a kind of inertia that prevents them acting when a neurotypical person would act. It's not laziness; it's more a refusal to veer from structure and routine. 
This gets worse when stressed or in burnout, I think. I'm not necessarily saying an #autistic person would not go to hospital for a broken toe, (though I'm convinced this would be plausible), more that minor ailments will go unreported as action barely occurs to us.

This means that I reckon its reasonably likely that a lot of #autistic people are wandering about like thd walking wounded, with low level acute or chronic condition that aren't bring treated. And there are loads more reasons why a trip to the GP can be out of the question.

One is that GP's surgeries and hospitals are terrifying, completely non-autistic friendly places. Think about it for a moment.

Sitting shoulder to shoulder in a stuffy room with closed windows, with peculiar and unpleasant smells everywhere, bright strip lighting, people rushing around, children crying, chatter, phones and tannoys going off. It's like Satan designed an #autistic hell.

Doctors themselves are intimidating. If they know we're #autistic, then there's a pretty good chance we'll be patronised and told not to worry our pretty little heads about such things, or flat out disbelieved. If we are listened to, there's the risk of being thought OTT.

Remember, in the popular imagination #autistic people are viewed as somehow childlike, perhaps because it's still wrongly viewed as a childhood condition. So we don't get the respect we need in thd doctor's surgery.

I have another problem - I'm so desperate to get out of the GP's room that I forget most of what I was meant to inform them. Grateful I've been listened to at all, and terrified of wasting their time, I bolt out the door as soon as I can, not having told them my leg's broken.

For #autistic people with learning difficulties, or who are non-verbal, the potential for illnesses and problems to go undetected gets very high indeed. Things are discovered too late.

We begin to understand, perhaps, why #autistic people can die young. The very fabric of society is unsuitable for us to thrive in.

#autistic people are also often quite lonely. We may, for example, be married or in a long term relationship (yeah, autistic people can do this) but it's likely we won't have huge numbers of friends - those people who see us infrequently enough to notice we look different

Our spouses or partners might not notice us losing or gaining weight in the face, or looking more wan and pale, of losing muscle tone. People tend to rely on that next circle of socialising for these heads up. #autistic people often lack that circle entirely. 

There's also the issue of abuse. I don't know whether murder or manslaughter rates for #autistic victims are abnormally high I'm afraid, but I wouldn't be surprised. #autistic people suffer abuse very frequently, for lots of reasons. Emotional, mental and physically abuse.

But I think abuse is too big a subject for here and now. Back to getting medical attention, the very act of organising an appointment is stacked against #autistic people. Having to make a phone call is like kryptonite for a start, as is being on hold for 20 minutes.

Surgeries can sometimes offer online appointment management (because, you know its 2019) but not always and certainly not always very well. Then there's the problem of fitting an appointment in, especially if you work.

If you're anything like me (God help you) then squeezing an appointment into a working day is disastrous as they're so stressful, they leave you completely wrecked afterwards. Oh, hello year 9! Yes, let's... learn... stuff...

And there's probably a 50/50 chance you'll forget the appointment anyway. I do this do frequently that I end up ashamed to show my face. This spirals down, getting worse and worse. Executive function problems are not fucking around - they can spoil everything.

Once you feel that you can't show your face at your doctors surgery, real problems can start to rack up quickly. #autistic people seem often to be really good at feeling intense shame and guilt for things that aren't that bad. Or that might just be me.

Anyway, I'm nearly at the 30 tweet mark so if you've made it this far, thanks. Please share if you can, let me know if I can be of help. If you feel like buying me an espresso, that'd be nice: 
https://www.buymeacoffee.com/UfTVnRY


Friday, 30 August 2019

Autism and Pokemon - why are they so connected?

Autism and Pokemon - a slightly less stressful post. But it will be interesting! I promise! Share if you want to look like a massive nerd...

I believe that the Pokemon games, from the original Red and Blue (or Green if you Gail from Japan) Gameboy games, are absolutely tailored to an #autistic market and are pretty much perfect.

(I'm not suggesting that #autistic people who hate pokemon are not autistic, nor am I saying neurotypical people who enjoy pokemon are autistic. Just to be clear.)

Firstly. Pokemon was the brainchild of Satoshi Tajiri, a Japanese game developer, who is autistic. He was deeply interested in entomology as a child, roaming the countryside around Tokyo to find interesting bugs.

After years developing games and publishing a gaming magazine (Game Freak) he pitched his idea of a monster collecting game to Nintendo, who didn't quite 'get it' but were impressed by his portfolio of work. Pokemon was born.

For those who somehow have avoided the game to this point, at its core Pokemon is a 'collection' game. It's the electronic version of stamp collecting or, indeed, butterfly collecting. There are loads of extra bells and whistles, of course, but that's the inner core.

Collecting things in a single minded drive for completion seems to be a bit of an #autistic thing, though it's not exactly unique to us. But it seems common that collections of items, from stones to straws, are frequently our 'Special Interests'. Pokemon feeds this.

Not only were there 151 bizarre creations to collect. They also all had different stats. You may catch two Weedle to discover one is a wimp, whilst the other is, well, slightly less of a wimp. So this increases the collecting potential massively.

Throw in genders, shiny (different colour to the norm for their species) and different 'formes' and you have a veritable cornucopia of collecting excitement to enjoy. This tickles a particularly #autistic itch very nicely indeed.

Spend any time with an #autistic collector of stuff and youll soon discover they also want to mess around with their collection. Organise it. Arrange it. Show it off. Play with it. Again, Pokemon allows for all of this.

Your collection of beasts is not just an ornament. You can cattle them against other collectors, boosting their stats and opening up whole new avenues of collecting. Your collection *means something*.

But that's not all! Pokemon was an early example of the 'grinding' gaming mechanic (not as exciting as it sounds). And in my limited experience, #autistic people love grinding on video games! (sounds wrong, sorry).

Grinding is where you perform the same basic task over and over to receive small but gradually substantial rewards. Mobile games swear by it, but Pokemon did it right. If you so desired, you could make your Charmander fight little battles against pigeons over and over.

Doing so netted experience points, which levelled up your firelizard, making him stronger, tougher, faster, fieryer. It took AGES but with enough determination you could have a level 50 Charizard before you fought the first boss. And #autistic people can be very patient.

The comfort and peace of doing the same easy task over and over, knowing there was a good reason to do so, is incredibly relaxing and was a great way for me to Zone out of my addled #autistic brain for a while. Much like building Lego does, too.

I always felt, when playing my favourite video games, that I was afraid to reach thd end, as then my escape from reality would be over. This was a huge problem for me with games like Sonic the Hedgehog. But in Pokemon, you could spread it out for ages and ages.

Pokemon is also about a person relating primarily with animals. There are no significant human friendships in the original games (something altered in the cartoon) apart from the mentor Professor Oak. Instead, you bond with your Pokemon. This is good for #autistic folk

#autistic people can make up for the struggle of human interaction by being very close with animals. It's not always the case, but a large number of us absolutely adore animals and nature - @ChrisGPackham and @NaturalistDara are two high profile examples of this.

So a game about looking after and collecting animals who you become extremely fond of is right up our alley. The fact you go around fighting them like bear baiting is less good, and I'm sure a bit of a problem fof some, but this angle was tempered by the mechanic.

You see, Pokemon couldn't die. It's unclear whether they could even be hurt or injured in any way. Instead they simply fainted when they'd been hit by enough fire to destroy a city or enough rocks to build a mountain. This was OK. As an #autistic person, this was fine.

There are other reasons why #pokemon and #autism fit together so nicely - the mathematics at its core, the safety of a fairly closed open world map, the hidden strategic depth, but goodness me I'm tired and hungry so I shall stop there.


Autism in the Workplace - Part One


Not all #autistic people will be able to work. The comorbities of the condition (depression, anxiety, learning difficulties) can make it impossible to have a career, especially in a world not set up for autism. But many autistic people do work.

Some can be very successful indeed. Others may carve out a niche. More still will work away, often in considerable discomfort, trying to manage their job. #autism can make any kind of employment difficult - and here are some reasons why.

Communication is an intrinsic part of any job. Any neurotypical will admit that. What they may not be aware of is how much of this workplace communication is packed with implication, connotation, unspoken rules and conventions. Places of work are terrible for this.

Think about your job. Now think about how often your boss uses hints, implication, body language etc to get a point across. It happens all the time. What in linguistics we would call paralinguistic features (body language - the physicality of communication) are everywhere.

Or prosody - the sound of speech. That slight inflection that tells you your colleague is pissed off; that rising tone that indicates sarcasm. Workplaces, like everywhere else, rely heavily on all of this. And it is awful for #autistic people.

There are a combination of reasons why #autistic adults struggle with this 'layer' of pragmatic, implied communication. Firstly, it simply doesn't come naturally to us at all. Every time we come across it, we have to deal with it 'manually', each time. This is tiring.

We are therefore prone to messing up. God knows how neurotypical people do it, but we will have spent our whole lives learning how all this works, but only at a surface level, so it's really easy for us to get it wrong or to misread the situation.

This is bad enough when having a pint with a friend, but potentially calamitous when in a high pressure workplace. Hence, we are anxious. We've had enough experiences of messing up to be traumatised by it, in the worst cases.

Due to the stress, #autistic people are prone to taking utterances literally. I never thought I did this as I have a highly honed radar for banter and sarcasm, but I realise that when stakes are high, or the banter is too much, I do this all the time.

So relationships between an #autistic person and their boss is liable to collapse if this boss typically uses this implicit language or spends their time joking and using sarcasm. This can cause utter misery.

Is that really the deadline? Does this person really want to scream? Are they really depressed? They said they were? Am I really in trouble? Do I actually have to do this thing? Did they mean it? Over and over and over...

How often have #autistic people walked away from a conversation with a superior oblivious to the fact they'd been told off? Come on - tell us your stories! How often have you walked off not realising you've committed to a massive extra task?

If you employ an #autistic person, you have to say what you blooming mean. No implicated info. Just say what you want, in sufficient detail. Keep it straightforward. Not because we're daft - because we just don't know.

But that's not all! Meetings. We all have them, but by crikey they don't tend to be #autism friendly at all. Firstly there's the hierarchy problem I've mentioned before who "deserves" to speak and who doesn't (this is a thing and you know it).

Secondly, trying to get word in edgeways. This is hard for #autistic men and is bloody awful for #autistic women, as generally speaking neurotypical women in the workplace are liable to be spoken over by overtestosteroned men. When is the right moment to speak? God knows.

Another subtle problem is that one trait or sign of #autism can be a 'non-standard voice'. Maybe rather high pitched, or very quiet, or slow and ponderous, or the stereotyped monotone - it is a real issue and people can be bloody horrible about things like this.

I'm extremely loud, for example. I used to get told I spoke too loudly in meetings and it bewildered me. This was pre-diagnosis. Now I understand but it still sucks, as I can't help it.

Meetings with a lot of staff can be hot, noisy and smelly too, so our sensory issues can start firing off pell mell, meaning we start to lose track of what's happening. When people start talking over each other, we may as well just give up.

And remember, meltdowns are a thing. Now imagine the terror of knowing you could, nay *will* meltdown any moment in front of your peers, your boss, maybe the Big Boss. It is Awful. So you sit in the meeting doodling to keep calm, hoping no-one calls you out.
But we can be bloody good at our jobs. Our focus, skills, understanding can be perfectly suited to lots of situations and we can thrive in the right environments. It's just often, these environments don't get created.

Then there's our executive [dis] function. #autistic people can struggle terribly with organisation and decision making. This doesn't mean we're incapable, we just need patience and understanding, but in the world of work this can be in short supply.

And actually, many #autistic adults compensate for this really well, being list monsters with reams of notebooks for all their to-do lists. I wish I was good at this; I forget to look at the lists.

#autistic people probably spend longer fearing for their job than most. The rates of homeless autistic people are terrifyingly high - over 12% of homeless people show significant autistic traits, compared with the believed 1% of general population. Losing a job can cause this.

Then there's the working environment. The biggest problems are open plan office, hot desking (surely an invention if Beelzebub) and air conditioning...

Open plan offices are disastrous as there is no defence against the endless noise of the chatter, phones, fans, computer hum - it's a cascade of sensory over stimulation.

Add in hot desking, so there is no familiarity or sense of routine, and its pretty much an actively anti-autistic workspace. This shouldn't, in my opinion, be allowed.

I'm lucky - I have my own classroom where I can hide and recharge when the students go. The thought of never having a set abode, a space that was mine, makes me feel desperately uncomfortable.

I'm going to stop for the night. I'll do more tomorrow - promotions, managing, work socials... Still loads to talk about...

Anyone has a spare few quid to shout me a coffee for tomorrow morning that'd be nice!


• • •


Thursday, 29 August 2019

Autistic People and the Need for Justice

#Autistic people often have intensely strong feelings of justice and fairness, to the point where it is seen as a characteristic trait. This can appear at an extremely young age and persist for a lifetime.

If you think about any #autistic person you know, including yourself, it's very likely you will have noticed that they have very strongly held opinions on some matters. If you haven't noticed, because you bumble through life merrily, then have a think about it.

Now as far as I know (and I may well be wrong) there isn't a huge amount of research on this, so we're going full-on anecdotal here but it may still be interesting.

It could be that our #autistic need for order and clarity is behind this. We expect (or rather need) consistency from the people and systems around us. Without consistency, as we lack that weird intuitive knack of understanding what's happening, we're lost.
Consistency keeps us #autistic folk functioning (hence routines, rigidity etc) and the concept of fair justice is deeply intertwined with consistency. The idea of 'one rule for one, another for another', is so completely unreasonable to me, that I can barely stand it.

But the world seems to revolve around this concept. The idea that some people have to exist under different social circumstances to others is rife, and getting worse. Corruption, from high to low level, is everywhere. As a whole #autistic people can't handle this at all.

(I'm not saying neurotypicals are not outraged by these things too - more that it's a visceral, total inability to understand the mechanism behind injustice. We'd be fantastic Captain Americas, but pretty crap Iron Men.

There is thinking that part if this is our ability to see both the wood and the trees, quite happily. We (generally!) don't get distracted by emotional issues or do bogged down in detail that the main idea is lost. We can focus on the issue completely.

So, Greta Thunberg understands the science of climate change.She understands its is undeniable, and that any attempt to suggest otherwise is bullshit. Therefore she ignores such attempts completely - its irrelevant, it doesn't muddy the water as the water's protected from mud.

Where others may be distracted and convinced that there are mitigating factors or, say, financial reasons to ignore climate change, an #autistic person will often be immune to this as they recognize the fundamental fact climate trumps all.

There's a clarity of vision at play, I think, that may not always be useful (we're very literal thinkers and this can cause problems in communication) but when it comes to justice anx especially social justice it makes #autistic people superhuman!

There's also an interesting thing about #autistic people and authority. We don't respect it. Not in that 'must treat this person differently cos they're in charge' way, anyhow. There's a tendency to talk to very important people normally, to treat them like everyone else.

It's infuriating at times as I'll speak with my boss and afterwards be like "oh shit, what did I just say??" but I guess altogether it's a good, egalitarian thing. I'm certain that if an #autistic person spoke to the Queen, they'd do so as if over a pint or a coffee.

I think it's because hierarchy that goes beyond simple responsibility/oversight is a neurotypical thing, with your fun unknowable codes of conduct and social gaffes and rules (you strange, strange folk!) but is completely pointless in the mind of an #autistic person.

I mean, the whole kow-towing to authority and pretending that they're better than you fundamentally - that's just not on, and if you get a promotion from acting this way, we'll that's not fair or reasonable either. I think #autistic people are the ultimate meritocracy.

If you're good at what you do then great, but don't expect to be treated with reverence or anything.

Buy me a coffeeBuy me a coffee

Tuesday, 27 August 2019

My letter to The Guardian

Dear sir/madam, 

I was very disappointed to see the opinion piece on autism yesterday, by Tom Clements. As an active autistic advocate, who has spent the summer trying to raise awareness of autistic issues and struggles, I feel completely crushed that your platform has been used to amplify such divisive and unfounded writing. Clements is well known in the autistic community online, as he is a very active troll who spends a lot of time misrepresenting the neurodiversity movement, slurring prominent autistic advocates, accusing autistic people of not actually being autistic, and spreading quite obviously racist and sexist messages. 

Now I'm all for a press that presents various voices, but this will cause damage to a large number of autistic people. Take a look on twitter (I'm @commaficionado) to see the strength of feeling on this; the article presented neurodiversity as a 'fashionable' thing, which is a truly hurtful thing to state when so many neurodiverse people suffer daily problems with being understood and believed. Do you have any concept how irresponsible it is to worsen this situation? Autism is an invisible disability much of the time, and its hard to get people to take us seriously. Clements' article exacerbates this. 

I wrote a twitter thread last night rebutting the article, and it is now on my blog here: 


Please have a read to see the alternative point of view. 

This morning a whole vulnerable community is suffering. Please acknowledge this email and respond. I will be sharing this email on social media this morning. 

Thanks, 

Pete Wharmby 

Monday, 26 August 2019

Neurodiversity is Not 'Fashion'. A Rebuttal.

Neurodiversity - a thread. #autism #autistic #ADHD #Dyslexia /1 (takes deep breath)...

 Today an article about the 'over-diagnosis' of #autism was published in the @guardian in which the concept of neurodiversity was dismissed as a fad, a fashion, an empty philosophy. As someone who believes that the concept of neurodiversity is a valuable one, I must respond. /2

 Neurodiversity is the name given to the conceptualisation of neurological differences being non-pathological. So, autism, adhd, OCD, dyslexia etc are simply varieties of neurology rather than diseases. /3

 This means that negative connotations about illness, disease, defect or deficit are stripped from the 'conditions', ostensibly allowing for a more balanced and neutral analysis and understanding that isn't unduly affected by historical biases. /4

 It means also, in practice, a more balanced view of living with #autism, #adhd and so forth - so those who are autistic can accept this about the fundamental aspects of their personality, perhaps gaining some peace of mind. /5

Though there are important non-autistic (neurotypical) advocates for this concept, such as @stevesilberman and his book 'Neurotribes', it is quite powerfully self-driven by the community - especially #autistic people. I see all of this as pretty positive. /6

 Neurodiversity is controversial to some extent. Of course some people who are autistic or dyslexic or who suffer OCD may not feel they want to view things in this way. This is fine - go ahead. Unfortunately, however, it frequently goes way beyond this. /7

 Today's @guardian article is typical of the criticism that #Neurodiversity faces. Primarily: some #autiatic people can't self advocate; autism can ruin lives; autism is a disease and needs a cure; autism is caused by demonic possession (honestly - came across this recently) /8

 All of these things are, in my view, either outright wrong or simply too basic (I'm still on the fence about the demons...). But hey, each to their own. But no. It's not enough - instead there are focused, repeated attacks on the #neurodiverse community /9

 For what? For having the temerity to find solace in positive, or neutral labelling? For being happy about some aspects of their condition? For being bloody optimistic? /10

 It's hard to say for sure as many attacks, such as today's in the @guardian, target such obvious straw man arguments that it's impossible to determine what the actual problem is. /11

 There seems to be a belief that #Neurodiversity is somehow elitist and doesn't encompass those with #autism who cannot speak, for example, or who are unable to live at all independently. This is the harshest possible interpretation. /12

 Firstly, there's the obvious nonsense that people who can advocate shouldn't advocate because some can't advocate. Do you know where this leads? To no bloody advocation. That may suit some, but it doesn't sit easy with me. /13

 Secondly, there is the ignoring of what we call co-morbid conditions. These are common with #autism and can make quality of life very poor and things difficult. But, it cannot proscribe those without these comorbids to speak about their experiences openly and positively. /14

 Thirdly, there always seems to the implicit message (or explicit at times) that there are billions of freeloaders, pretending to be autistic. This is *particularly* hurtful but extremely commonplace, and it lies firmly in the heart of today's misguided article. /15

 Being autistic, as you may have gathered, is hard. I may have the capacity to bark at you all on twitter on a daily basis, but this doesn't mean I'm unaffected. It's a terrible daily struggle at times yet ultimately I *want* to make peace with it and find the positive within. /16

 And if we autistic people who *can* share our experiences *don't*, where does that leave those who *can't* share? /17

 Suggesting that people who live this struggle are lying, or deluded, or wrong, is cruel. It's arrogant and its presumptive. There should be no space for such assertions in a newspaper of @guardian position. /18

 I'm done. This was a bad one, hard to write. I hope I haven't left much out. If I have, please add to this as they tend to become awesome trees of discussion! Share etc.

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• • •

Autistic Burnout - We Need to Take This Seriously

Autistic burnout. A really miserable thread but maybe the most important one yet. Please share. #autistic #autism #burnout /1

 (I'm serious, by the way. This won't be light hearted and won't be fun either. But it might help.) /2

 #autistic burnout is, currently, a strangely under-researched and lesser known aspect of autistic life. Unless you're autistic, if course, in which case you may be living it. And I use 'living' in the broadest sense of the term. /3

 The word 'burnout' is widely understood. People talk of experiencing 'career burnout', for example, or 'relationship burnout'. In all cases it has the same meaning: being so bored of something that you can't cope with it anymore. #autistic burnout is rather more serious /4

It is not the same as a meltdown, in that an #autistic meltdown is relatively short lived, acute and periodic. Its like falling down the stairs. Burnout, however, is falling off a cliff. /5

#autistic people may never experience burnout; likewise, it seems to be possible to experience more than one. But it appears an #autistic burnout *is* a significant threat for the autistic population and could be a direct contributor to the awful suicide rates. /6

#autistic burnout is a reaction, seemingly neurological and possibly (?) related to depression, whereby an autistic person has existed for too long beyond their coping limits and has suffered a kind of 'snap'. /7

Common causes given seem to be related to coping in a neurotypical world, but we don't know for sure. It may be that masking (that bandwidth-heavy technique we have to 'fit in') for sustained periods of years or more could be behind it. /8

Or perhaps that long term trauma of perpetually fraught communication with neurotypical people leads to it? Maybe it's hardwired as an inescapable part of the condition. We just don't know. And can I take a moment to elaborate on why we don't know? /9

We don't know because, to put it bluntly, no one cares. The vast majority of money poured into autism research goes into prevention and treatment, mostly for children. Adult #autistic people aren't really that interesting, it seems. /10

Burnout is likely to be primarily an adult #autistic phenomenon, and we're only just beginning to understand what this is. Adult autism research is like fucking hens teeth and it makes me angry. /11

 I'm growing old, slowly, and apart from asking cool older #autistic people on here, I have NO IDEA what to expect, as there's just nothing out there. But I digress. Back to the cheerful topic of burnout. /12

Anyway. Burnout hits quite suddenly, I think, most of the time. And from what I gather, and my own experience, it is like someone pulls a plug on some vital, unknowable aspect of your personality. Something seems to almost literally *break* inside your head. /13

I've read many accounts but a few things stand out. Firstly, it is often permanent. That in itself is terrifying. Not only does your brain break, but it may not be fixable. Awful. A lot of #autistic people say it doesn't seem to shift, whilst others have reported improvements /14

Secondly, it is worse than depression. I can vouch for this, having had both. Depression is awful and deathly and one of the worst things ever, but burnout somehow - is worse. It's sort of, more rational? Like, you know you're fucked, whereas depression can be irrational /15

Thirdly, it permanently affects your ability to mask. Maybe no bad thing, considering, but its a shock for both the #autistic person and their loved ones. No longer masking can (and this is the most heartbreaking thing) be perceived as a total personality change. Its not. /16

In fact it's the world seeing you how you really are, and the fact that can go down so badly is a surefire recipe to add some depression garnish to your burnout. /17

But this is real, and it quite possibly kills people, and yet no one knows anything about it. The world really is crap sometimes. But if you have your very own #autistic in your life, then here are some things to consider... /18

Firstly, just be aware that burnouts are a thing. This will help if/when it happens. /19

Second, do not see a burned out #autistic person as 'not themselves' because they are not masking. This is insulting and depressing. Realise you may well be seeing their soft underbelly, and be gentle. /20

Third, do not play your part in pushing someone into burnout. Give #autistic people what they need, as far as possible, and do not push them beyond their limits unless there is an exceptionally good reason. /21

 Fourth, help #autistic people know their limits. We have an uncanny knack of blowing right past our ability to cope (thanks, in part, to desperately wanting to fit in) so actively help us work ourselves out. It may save a life. /22

Anyone else got any tips? This thread has been a grim undertaking and I'm going to wrap it up here. Tomorrow I'll do a thread on happy autistic puppies or something. /23 Buy me a coffeeBuy me a coffee • • •

Sunday, 25 August 2019

Holidays, autistic-style


Holidays as an autistic person: a thread on why holidays are possibly evil but probably worth it in the end.  Let's start with holidays abroad. Now, I love the idea of travel. Adore it. Read about it, write about it, it's great. In theory.

The realities of travel overseas makes my autistic brain explode in a myriad of lights and misery. Sorry for being dramatic. /2

My mind can fill with Romantic ideas of sitting on quiet station platforms in the shadow of unknown mountains, waiting for a train to who knows where, alive to the possibility of wandering.Reality is I'm terrified and worried my ticket won't work and what if there's no toilet? /3

Anxious all the time, as it's too beyond my comfort zone and I'm being besieged by new data, new sights, new experiences. I enjoy this, but the anxiety makes it tiring and spoils it a bit. There was a toilet. But I didn't know how to flush it so couldn't go.

Me, on holiday, probably not happy. 


Arriving in a new place I'm agog at the excitement of it all and eager to get involved, but end up spending most of the time in my hotel room. I've learned to be OK with this. /5

I've realised if a new routine is established quickly, then a ratio of out and about touristing vs recharging in my hotel room of about 2:5 is achievable. If you have an autistic person that hangs around you, then bear this in mind. /6

In 2013 I spent a few days alone in Paris. I had dreamed of eating in fine restaurants, drinking French beer in busy cafes late at night, reading Les Miserables, maybe even take up smoking briefly to really get in the spirit (joking). But I didn't manage this. /7

Ten minutes in a French cafe near Les Invalides had me almost in tears, as I *couldn't* get the waiter to take me seriously. I knew Parisien waiters were tricky but my #autistic learned understanding of subtext and body language was not up to thd task in this alien place. /8

I survived on coffee from Starbucks and frites from a takeaway near the Gare du Nord. Cheap though! I made up for this by going in basically every museum and art gallery there was, with hours recharging in my room each day. It was awesome /9

But all this was only possible because I was alone. For me, travel alone is the only way to travel as I can adjust my expectations for myself without worrying about others. And I'm aware that I'm lucky to be able to do such things - not all #autistic folks can.
/10

Travel abroad with other people is a whole new world of difficulty.

As a teenager I didn't holiday well. The change of routine, the new, more difficult daily expectations of me, all too much. I enjoyed my holidays with family but I know I was a nightmare to be around. /11

I had none of my safety blankets abroad. No Nintendo 64, no MTV 2, no familiar food, drink or faces. And crucially I didn't know I was #autistic at this point, so I felt tremendous guilt that my favourite holiday was the one I took my Game Boy Color with me (Pokemon Gold!) /12

And I've always operated by keeping what I now know to be my #autistic traits as secret as possible, having meltdowns in isolation, not stimming around people. This worked at home but did not work on holiday, where you're far more pushed together with your family. /13

I used to live from meal to meal, as mealtimes were structured and familiar and safe with few surprises or unexpected occurrences. Also I drank beer. Not a huge amount, but enough to shave the sharpest points of anxiety away. /14

If you have your own #autistic person, then please be mindful that you'd idea of heaven may be their idea of hell. It's quite emotionally fraught as you're meant to enjoy holidays, and failing to enjoy an expensive holiday is a real guilt trip. Know the limitations. /15

But don't get me wrong, for me at least holidays were still great and I love the new experiences once I'm accustomed to them, and after the fact. And what are holidays if they're not good-memory-generators? In this regard they worked. But in the moment, not so much. /16
• • •

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Autistic Meltdowns - a guide.


Tonight's stroll through the parks and glades of #autistic life will descend into one of the darker, more chaotic valleys of autism - the concept of the 'meltdown'. This will be emotive for all autistic readers and I'm sorry if I don't manage to communicate this well. /2

The term 'meltdown' has connotations of disaster. We all know that a nuclear meltdown, for example, is a less-than-ideal situation that may be worth avoiding at all costs. This is why there's some sensitivity around the use of the term for #Autism. Is it too negative?/3

But rather like the misguided idea that 'person-first' language is better, I've found that #autistic people seem to quite like the term meltdown, and for good reason - it's an extremely apt term for the phenomenon. /4

In a nuclear meltdown (bear with me) the hot nuclear material in a reactor heats up out of control and literally melts, downwards. It melts the base of its container and continues downward, like a light saber cutting through marshmallow. It ain't nice. /5

If the material hits water (ie the water table, which tends to squat just below the ground) it can explode with unpleasant force, spreading nasty radioactive poop all over the shop. (This is rather potted explanation, feel free to correct me below) /6

You see, this is a very appropriate term for what happens to an #autistic person when their ability to cope with a stressful situation is overwhelmed. It can be catastrophic, for all concerned. And I speak as one who has them reasonably frequently. /7

As I've expressed before, #autistic people exist mostly in a state of extreme stress. Stress from surroundings, people they can't understand, troubled communication, need for order, routine, patterns. Things can go very wrong. /8

If an #autistic person is kept beyond their capacity for stress for a prolonged period (it varies) then a meltdown is a possible result. It is a reaction to prolonged exposure to stress, warranted or not. /9

In a meltdown, an #autistic person will be acting more on instinct and in panic than anything else. Rationality will be out the window, as will logic and even basic selfpreservation. This is important to remember. Meltdowns can be very dangerous for the person. /10

Once a meltdown starts, it can be a little like a seizure, in that there isn't really anything you can practically do to shorten or stop them (though this is not always the case). Thus, you have to help manage it, stop it getting *worse*. /11

Please note - an #autistic person is *not* doing this for attention. Nor are they 'overreacting'. You have to gift them the benefit of the doubt, even if their behaviour is strange and alarming. Take it seriously and realise they are having a *horrible* time. /12

Meltdowns can vary in how they go, and all #autistic people will have their own way of getting through it, but I think it's fair that generally speaking they are either quiet and passive, or very active. /13

Passive meltdowns are my speciality 😕. For me, it's a kind of inward collapse, like my eyes and ears have inverted so all I can experience is in my head. Total passivity, even catatonic behaviour at times. Can't focus on anything. White noise in the head, like a 90s TV /14

If I'm not somehow removed from the stressor, this just gets worse. I'm not going into any more detail than that. But it's hard. Even though it's quiet, passive, it is *exhausting*. Almost the most tiring thing ever. Afterwards I get a 'hangover' that can last days. /15

And if you're generally good at masking and present as neurotypical much of the time, it can feel like a failure. Like you've let the mask slip and your true self loose. I remember a time I had a meltdown at work, Sainsbury's night shift, years ago. I was *ashamed* after. /16

Not that I knew what had happened, of course - I wasn't diagnosed. But I remember feeling so embarrassed afterwards, like what the hell was wrong with me? It prolonged the misery considerably. /17

But no one understands. No one has a frame of reference for meltdowns because we're not taught about them, or told what to expect, or what to do. So #autistic people are ashamed and neurotypical people are confused, scared, upset, angry. It's a shitty situation. /18

Active meltdowns are different. They can be loud, frightening, physical, aggressive.
They are also more commonly known of by the general public, due to their visibility. /19

Lots of different behaviours can happen but they are all trying to do the same thing, as far as I can tell - get yourself away from the stressor or get the stressor to go away. But things can get very unpleasant. /20

Some things that might happen during an active meltdown are: shouting, screaming, punching, kicking, running away, breaking things, hitting walls, breaking glass - all sorts. But remember, it's almost never rational or even conscious.

The sweetest, quietest #autistic people can have very aggressive meltdowns, which can be quite a shock to witness. But it's a safety valve that's blown. The person has had to deal with too much. /22

A meltdown is often seen as a failure on the part of the #autistic person, but this is no good. Its a natural result of our neurology. We can no lore change it as we can change the length of our toes. The failure, if we must use that word, is elsewhere. /23

The failure is with the external. I'm aware this is controversial, and I don't want to suggest #autistic people can get away with murder (autistic people can be dickheads too!) but in the case of meltdowns, the fault lies with the world. /24

Too little understanding. Too much willingness to push an #autistic person beyond their capability to cope. Too much aggression naturalised in neurotypical behaviour. Too little agency on the part of autistic children. /25

It is the world's responsibility to ensure #autistic people are pushed into meltdown as infrequently as possible. Not all can be avoided, but *loads* could be with just a little more compassion. /26

Meltdowns are awful. I cant stress this enough. The feeling of terror and powerlessness is something you don't forget, and you don't want to relive. Afterwards #autistic people can be utterly exhausted, often for days. The embarrassment. God, its dreadful. /27

So wherever you can, please help with this. Know that if you are pushing an #autistic person, this is a likely outcome and stop pushing. Let the take a minute. Don't cause avoidable meltdowns. Please. /28

• • •

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Friday, 23 August 2019

Dialled Up to Eleven - autistic sensory issues in school.



Hello. Here follows a list of potential sensory hazards for children in schools. Share if you can, as it's usually a pretty straightforward thing to make environments more autistic-friendly. #Autism #ukedchat /1

 1. The school bell. If it's not needed, lose it. If it is needed, make sure *all* autistic students (and staff!) are made aware of any changes to the routine. Allow students to wear ear defenders if they need to. /2

2. Glaring strip lighting. Classrooms are dreadful for this. Where affordable and possible, get diffusers over them all! Alternatively, use natural light as much as possible. If you have a malfunctioning light, flickering away, prioritise getting it fixed and leave it off. /3

 3. Scratchy school uniforms. Cheap shirts and blazers can irritate terribly, and obviously most families have to go the cheap option. Clothes irritation for #autistic students can be awful and be really distracting. If you can be at all flexible with uniform, be so here. /4

 4. Noisy classrooms. Easy one this! Only joking. But a calm quiet classroom is heaven for a lot of autistic children as otherwise they're liable to be overwhelmed by the different voices that they can't ignore. I hear every conversation in class, which is why I'm so strict!

 5. Smells. The pungency of the DT corridor or a Science room with odd experiments underway could tip an #autistic student over the edge on a bad day. God, MDF stinks. I used to *hate* the Design Technology dept as a kid for this reason.

6. Dirty hands. Activities that involve getting mucky hands, like painting, glueing, cooking etc can be bad for #autistic students who hate getting their hands dirty. This is just something to be aware of, really. be gentle and understanding. /7

7. Busy slides - too much on the board! If you use PowerPoint, please keep slides sensible and minimalist with a clear 'structure' for the eye to follow. Don't be surprised if your #autistic student gets frustrated if you'd board looks like a teenager's bedroom wall! /8

8. Assembly. Being compelled to sit very closely with peers can be distressing for some #autistic students. The proximity and feeling of claustrophobia can be too much to bear. Encourage, where possible, autistic students to sit where there's more space. /9

 9. Smells in the classroom. This is sensitive, but I've seen #autistic children *really* struggle with kids who have begun to get a bit of an odour. Be mindful. Also, diffusers and scents in a classroom? Best not to use them, unless you had terribly stinky feet or summat. /10

10. Temperature. #autistic people are often sensitive to temperature and have a much narrower range of tolerable temp than neurotypical peeps. Don't whack the heating right up until everyone is sweating and have some windows open! /11

11. Classroom displays. Avoid things dangling from the ceiling, and keep things simple and clearly delineated on the walls (clear areas for decoration, other empty
zones). /12

12. Lunchtime. It's noisy, unstructured, smelly and messy. Some #autistic children struggle, plus there are potential serious considerations about food - not knowing what's on the menu, getting something unexpected in their lunchbox. Be kind and
accommodating. /13

13. Shouting. Sometimes teachers shout at students. It's probably not the most effective management technique but it happens. But it's never going to be effective with an #autistic student. I remember being close to tears when any teacher ever shouted at school.  It might alienate or permanently damage relationships with the student. The loudness and suddenness of shouting can be terrifying for #autistic
students and this has to be considered if behaviour is an issue. /15

15. Movie lessons. They happen, either in support of a topic or at the very end of term
(controversial!) but they can be nightmarish for #autistic students. Change of routine, loud noise and music, kids not as monitored as usual - potential massive problems. Be aware. /16

16. Toilets. Yes. The loo at school, especially for girls it seems, can be a horrifying space of cramped, cliquey bullying so it's often the case that #autistic students will ask to use the loo during lessons, when it's quieter. May double as a retreat to prevent meltdown. /17

17. School bus, especially on trips. They can get very noisy indeed, so be prepared to allow for noise cancelling headphones to be used by #autistic children; actively encouraged it, in fact. /18

18. On the trip itself, make sure you always have at least one, ideally two teachers at a
predetermined 'base camp' if you're letting kids roam. #autistic children will appreciate the security of knowing you're there and will probably make use of it to wind down. /19

19. Parents Evenings. These days these seem to be huge collective affairs with everyone in a huge room shouting over the general din. Needless to say, autistic
students (and parents! Never forget us old autistics) are likely to *hate* this and may avoid. Offer an alternative! /20

20. Drama and PE. This isn't a blanket thing, but some #autistic students will find
these subjects challenging due to lack of structure at times and noise.


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Teaching autistic students - behaviour management


Reasons why #autistic children may present challenging behaviour in class at school. A thread, and an incomplete list. (sorry to fill your time line with yet another but it keeps me going at the moment.
Talk to any teacher about #autistic students and I can guarantee 95% of the time they will have the following mental image or response.
a) oh god, there goes the behaviour in *that* group then,
b) oh they're so lovely and quiet. Maybe too quiet.
c) she's autistic? No!

It's either going to be a nightmare relationship, a dream, or it's a shock (often as #autistic traits are so misunderstood. I'm going to be focusing on reaction a) today - a strange yet often partly justified fear that a certain 'type' of autistic child can be hard to manage.
I'm not going to lie to you - #autistic people *can* be extremely difficult to manage, as a parent, teacher or even employer (sorry bosses over the years!) for many of the reasons we've been looking at all week on this endless odyssey of autism chat. But what can we do?
School settings are not set up, at all, for #autistic children. Pretty much everything about the cultures and organisation of a school is anathema to many #autistic children. There are some good bits (set routine, etc) but not many. Here's the issue.
Most #autistic children will find being at school extremely stressful. This is *before* you add on any extra stress for typical school issues like tests, detention, bullying, etc. They are walking around with probably 50-100% more stress in their heads than their peers.

And they're only children! Imagine that, being twice as stressed as everyone around you, not sure why, and with little experience of how to cope. It's absolutely no wonder they kick off at times. I would.
So what causes this stress and what releases it into challenging behaviour? Well firstly there's all those sensory issues I tweeted about a while ago...
These cause stress constantly - background, inescapable stress, but these things might not be the ones that trigger a meltdown - they're more like a stepping stone to a meltdown. But severe varieties of these sensory issues can cause instant problems.
For example, as really loud fire alarm, an exceptionally strong odour, really awful behaviour from another student, bright colours flickering on the projector - these could cause enough stress to trigger very challenging behaviour or even a meltdown.

I keep mentioning meltdowns, and this is a huge aspect of #autistic life I haven't touched yet - for the time being I'll just say they are times where our ability to cope is overwhelmed by events and we enter a kind of 'shutdown', which manifests in loads of different ways.
It may be a kind of passive effect, where we go non-verbal and kind of 'disappear', or it may be violent and physical. I think #autistic people vary considerably but we pretty much all get them. They're a kind of safety valve, only one that can alienate neurotypicals.
Please bear in mind that not all challenging behaviour will be a meltdown. Usually it probably won't, but you need to be aware of the possibility.

So sensory stuff is a good place to start if you have an #autistic student who's a bit, well, naughty. Audit your classroom, try to see it from an autistic person's viewpoint, and amend if necessary.
But what else? Well here I'm going to get a list going, as it's a useful structure fof these interminable threads I do. So, onto the first thing...

1. Have you, the teacher/adult been unreasonable? If you have, an #autistic person typically will see this and they.will.hate.it. Good lord, you won't be getting away with that, sunshine. If you start by being unreasonable, you have to back down. Sorry.

2. Have you been hypocritical? Again, this may be identified instantly, and often #autisticstudents can get extremely upset by this, as are adults. We can all be hypocritical at times - best thing to defuse is to admit, accept, and explain the circumstances.

3. Has the school body, SLT or someone else been unreasonable or hypocritical? I find one of the best ways to bond with my #autisticstudents is to talk with them about these perceived slights, see it from their view and be kind even when defending school policy.

4. Have you missed someone bullying or being horrible to them? This happens often in class, as kids can be wily things when trying to destroy the lives of their peers. #autistic students may feel upset that you've missed what happens as they know it did, so you should to.

5. They may have some truly dreadful experiences at home and need to let off steam. Remember my b) example earlier if the quiet #autistic kid? They may well have caused havoc at home to compensate. What if you *can't do that at home*? Then where will you do it? School.

6. Do they understand #autism? I find the more content #autisticstudents are those who know a decent amount about it. Not all do. For some it's just another thing a doctor has told their mum they are. It can be meaningless and irritating.

7. Are they desperate for a rest or a moment with their favourite interests? I get to know my students interests ASAP do I can try to mould activities and tasks around them. Writing creative writing? Got a Sonic the Hedgehog fanatic? Let him write creatively about that
(And in my case, bloody join in too! Nothing will make their day more than you knowing a bit about their interests!)

8. Are they sad about something bigger? Think @GretaThunberg. It's very likely you'll have #autisticstudents who care *deeply* about big issues. I know several who are immersed in gender and sexuality issues, fighting for that. Another is terrified by climate change. Another has extremely strong opinions about animal welfare and campaigns tirelessly. These are *real passions* and I can pretty much guarantee that they will sometimes feel down about these things to the point of challenging you. Talk with them.

9. Do they understand the value of the work? I know teachers feel all kids have to simply accept this as a given, but #autistic children can't necessarily. They may have way stronger ideas about what they want in life than you expect, and your work may seem irrelevant to them , so sit down with them and explain how it is relevant, how it can be useful. I know this feels off as a teacher; I hate that attitude myself, but with #autistic students it can be very genuine so be kind. Take some time to talk.

Notice how many of these involve talking to the #autistic student? This isn't as paradoxical as common misunderstandings of autism would suggest - autistic people are often happy to talk so long as that talk is calm, reasonable and friendly. No ambiguity, no sarcasm
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Friday, 13 April 2018

The Story of the Titanic is Powerful Enough Without Convoluted Conspiracy Theories


Spend any amount of time on YouTube and you will soon discover a realm of paranoia and distrust - a world of conspiracy theories beamed onto the screens and into the minds of the young and credulous the world over. Some of these are hilariously daft, such as those surrounding the ‘Flat Earth’ concept. Others are fascinating yet overwhelmed by strange flourishes and out-of-this-world explanations, such as the Mandela Effect. Still more are fun exercises in lateral thought that tend to collapse under even the lightest scrutiny, though this doesn’t tend to affect their popularity. In this category I think you can confidently place the most famous conspiracy regarding the RMS Titanic.
Differences in deck A and B layout


This theory has it that the disaster was an insurance scam involving a switch between the slightly older yet almost identical RMS Olympic and the brand new Titanic. Some conspiracy advocates leave it at this - a strangely unexplained and seemingly pointless swap - but other, more sophisticated types tend to point to the Olympic’s collision with the HMS Hawke in 1911 and the idea that this fatally compromised the ship, leading to the White Star Line (owned by JP Morgan’s massive financial empire) deciding to cut their losses and gain insurance money back from a disaster that would lead to a pay-out (the Hawke collision didn’t, you see, as it was partly the fault of the Olympic’s crew). So far so logical, if you are happy to accept that a large maritime company that made its money from safely ferrying human beings across the Atlantic would risk losing its reputation and thousands of lives in such a manner. So, the story goes, the Olympic and Titanic were swapped, with the damaged Olympic being the one to hit an iceberg and sink in April 1912 and the spanking new Titanic to go on to lead an active life until being scrapped in 1935. It’s a tempting idea, isn’t it? Simple, effective and most importantly indicative of evil inhabiting the upper echelons of society.

But the slightest scrutiny destroys the theory. Any small amount of knowledge of the ships leaves the theory completely dismantled and untenable. For the theory to hold water, the two ships would need to have their accoutrements (name plates on both the ship and other paraphernalia) swapped without attracting much attention. They would also need to have any physical differences swapped too - and this is where things go wrong. For sisters, the Olympic and Titanic had significant structural differences, especially on decks A and B. The Olympic’s A deck was entirely open as a promenade deck, the whole way around the superstructure, whereas the Titanic’s A deck was enclosed for the forward half of the superstructure in order to squeeze in more super-posh suites with their own private promenade deck space. This was quite easily observed, even from a distance, and was the main difference between the two ships.
B deck was likewise significantly different, with the Olympic having uniform, evenly spaced windows (for the most part) and the Titanic having very muddled and chaotic window placement - this was a result of differing room layouts, again trying to squeeze further First-Class accommodation into the ship. Importantly, these two differences were not easy to swap. In fact rearranging the window on B deck would have taken months and would have been extremely obvious to anyone in Belfast watching the construction, and there simply wasn’t time to do such complex and expensive work.

The starboard screw of the Titanic wreck with '401' clearly embossed.


Furthermore, the wreck itself has given us lots of proof that the ship quietly rusting on the sea floor, two and a half miles down, is the Titanic. The ship’s hull number when it was being constructed by Harland and Wolff was assigned as 401; Olympic was 400. This number was stamped on lots of key elements of the ship, including the bells, ship’s wheel and screws (propellers). One photograph of one of the ship’s half-buried screws clearly shows the number ‘401’ inscribed into the bronze.

On top of this hard, physical evidence there are lots of other problems with the theory, including the one that is always problematic for any major conspiracy - secrecy. How such a desperately cynical and devastatingly catastrophic act as purposely causing a passenger liner with 2,200 souls aboard to sink in the middle of the Atlantic could manage to go unnoticed or without any whistle-blowing is frankly inconceivable. There is a great deal more I could add, and I am sure plenty of people will continue to disagree and will believe the conspiracy, but I feel that as we get to the 106th anniversary of the sinking at 2.20am on Sunday 15th April, it would be a good idea to remember that the poignancy and power of the story of a great ship brought low by grim happenstance is enough on its own, and any cheapening of that legend should be scrutinised fully to avoid tarnishing the memory of those lost for no reason.

Friday, 23 March 2018

Living with Autism - a series of Twitter Threads

Over the last week, in preparation for the often well-meaning but sadly pretty misguided National Autism Week, I have written a series of threads on actual autistic experience and how to relate.  I have gathered these together on this blog post for ease of reference.

Monday 19th March – Eye Contact

Don’t make an autistic person look you in the eye.  Don’t expect them to do so.  Hell, if you’re dealing with someone who doesn’t look you in the eye, give them the benefit of the doubt.

Eye contact and its associated discomfort varies for all autistic people so this is a little generalised, but to try to help neuro-typical folk understand the deal here’s my take on it.
Looking directly at someone’s eyes feels a little like a combination of staring at the sun and accidentally catching the eye of a drunken maniac in a bar – a combination of pain and fear.

It hurts because we don’t want to do it, so it’s an effort of will to force ourselves.  The reason we don’t want to is because we don’t like how it makes us feel.  Part of me wonders whether I should even have to explain beyond that.

You see, it’s just the way we are.  It doesn’t hurt anybody.  It doesn’t cause any actual problems.  But I feel we’re not yet at the point, societally, to leave it at that so I’ll press on…

So, for me the ‘fear’ element of eye contact stems from several things, all of which swirl in my mind like a Beecham’s Powder every time it comes up.  First is a simple fear – are they ok with aye contact?

As I don’t like it, I wonder if they don’t too, so this puts me off, so I look away.

Second, is eye contact socially acceptable at this point? This you can learn over time but it still comes up, especially in transactions with cashiers etc. Bleurgh.

Third is related to second – how long should the contact be maintained? Frankly, I haven’t a clue.  Would quite like some kind of guidebook.

So there’s a terrible fear of screwing it up – eye contact where it’s not ok; staring for too long; averting gaze too fast.  None of the rules come naturally and getting them wrong can be mortifying – it’s grim.

And ultimately, beneath all of this is a simple fact – for whatever reason autistic people don’t seem to need eye contact during a conversation – it’s not required.  But we feel we should, because everyone else does.

So we’re left with a problem. We autistic folk are busting a gut to ‘fit in’ with this and many other things, all because we feel we have to. The alternative is not appropriate. And why?
Well, if I may, it’s because neuro-typical types, possibly like you, dear reader, still go all weird when we don’t look you in the eye.

You go all weird.  Not us. We’re trying really hard. Are you trying?



Tuesday 20th March – Empathy and Emotion

It is a commonly held view that autistic people can’t empathise, sympathise or show emotion.  Sometimes it is hypothesised that we can’t even feel emotion (!) As enduring as these views are, I’m afraid they are about as accuate as Accuweather…

Suggesting that autistic folk cannot feel emotion as ‘successfully’ of sympathise as ‘helpfully’ is one of many insidious ways that autism ends up being regarded as a terrible condition, one that you’d avoid using vaccinations against actual deadly diseases to prevent.

This attitude, that autism is something dreadful that ruins an individual is an unfortunate one, and something I’ll probably tweet about another time.  But back to empathy: the truth is that autistic people can empathise, just not in quite the same way.

I will, as always, use myself as a case-study so be aware I cannot speak for all autistic folk.

First, autistic people can definitely, obviously feel emotion.  We are not robots, nor are we sociopaths.  We get sad and happy and silly and all the rest.  But there is, I think, a fair point to be made.

For me, emotions are powerful and sometimes dominant, and I wear my heart firmly on my sleeve. In fact I would say that I have tremendous difficulty hiding my emotions, as we are apparently meant to be able to do.  I simply can’t.  If I’m sad, you’ll be able to tell.

However, I think it is more difficult for autistic people to identify the emotion they’re feeling – to pick it out of the chaos of our minds and hold it up to the light.  I’m always mightily impressed by neuro-typical folk who can identify exactly how they feel.  Crazy skills.

Similarly, we may not know what to do with the emotion.  I think this links to our lack of inherent social understanding – in what ways is it ok to show people you’re sad or furious? It’s hard to say, so we may come across a little…unusually.
But just because we express our happiness by shouting or anger by shaking doesn’t mean the emotion isn’t real, and certainly doesn’t mean the cause of the emotion is irrelevant.  That’s important.

As for empathy – we can identify whether you’re sad or angry or happy.  Of course we can, and I think this is true of many autistic people. I’m a slave to the general ambience of a room, hugely affected by the prevailing mood, so empathy isn’t a problem.

But I’m not sure I can pinpoint why you may be feeling the way you do.  I know I’m dreadful at this.  I’m chuffed you’re happy, but unless it’s painfully obvious, I won’t have a clue why.  So I might have to ask you.  Same if you’re sad.

I may also struggle to join you fully in your emotions, even if I recognise them.  For example, you may be sad but it could take me a while (or absolutely ages) to realise you need a hug.  Instead I’ll just sit there, feeling sad for you but not having a clue what to say.

So it may not be immediately obvious that an autistic person is empathetic or emotional, but that should not lead to a belief that these are things we can’t do.  But, and here’s the kicker…

It’s the case that empathy may not be forthcoming. We may be too stressed or tired, or we may genuinely struggle with it or showing it.  This does not mean we’re somehow broken.  Just different.


Wednesday 21st March – Sensory Overload

Sensory overload is an aspect of autism that is hard to explain, and by no means standard for all autistic people.  I have it, to an extent, so I’ll be leading with that, but some people have it to a far greater or lesser extent.  Buckle up, it’s thread time again.

Firstly, all five main senses can be overstimulated for autistic people, possibly all at the same time.  I’ll go through each of them in a moment.  As for ‘overload’, this is a discomfort that can be extreme in response to sensory stimulation.

So visual overload is being overwhelmed by the visual detail and colours and shapes around you.  In a busy space, like a city centre, the sheer quantity of things jostling for visual attention can be painful to experience, leading to panic, anxiety, migraine or meltdown.

The details of every word, letter, image or colour of a scene can be too much, as it seems the brain struggles to blur out the unimportant details.  It’s a bit like a computer game that can’t mipmap (a process that dulls graphical details at a distance.)

The brain is simultaneously interested and focused on all the details at once, which frankly is a little too much to bear. Imagine what a super-busy classroom with ever changing complex displays must be like…

Audio overload is similar – no noise is filtered out. When stressed I find it impossible to ignore sounds, no matter how inconsequential. If they build up, layer on layer, it can become distracting, horrible, painful, terrifying. Chattering classrooms are a grim example.

I think it’s fair to say audio overload can knobble just about anyone who is autistic, no matter how well they can camouflage or mask it.  I have a hunch that fairgrounds, clubs and such aren’t popular places…

Olfactory overload is something I suffer from.  In fact, I have found I spend at least half the time with my nose closed at the back (if you see what I mean – where it meets my throat) just to avoid potential smells that could throw me.

Strong perfumes, air fresheners, bad smells, petrol, whatever – they can distract to an enormous degree and even cause misery if for whatever reason the smell is disliked.  I don’t know whether smells are stronger for autistic people, but they’re definitely more distracting.

Gustatory overload (taste) is not something I experience, which is great as it means I can eat with impunity, but I know it can cause some autistic people to have very limited repertoires of food, often mistaken for fussiness or faddiness, because some tastes are dreadful.

Tactile overload can be very common, and is usually to do with temperature and clothing.  It is very common indeed for an autistic person to have significant problems with heat, with only a narrow range of temperatures felt as okay.
I can’t stand temperatures over 22⁰C, for example.  Makes holidays a bit risky.

The texture of some textiles can be off-putting and again cause severe reactions, especially in younger children.  Denim, rough cotton, linen and wool can be anathema, causing extreme discomfort and distraction.  This can lead to extremely small wardrobes of trusted clothes.

But these clothes will be loved for their softness and lack of general offensiveness, so be patientand gentle when they need throwing out after long service!

These overloads will come and go, be consistent or erratic, and cause different amounts of consternation.  But they are very real and can be very disturbing and miserable.  Schools could help a lot with this.

From reducing the amount of visual ‘noise’ on the walls (laminated posters!!!) to allowing autistic students to wear more comfortable clothing, adjustments can be made where necessary, and should be made when necessary.


Thursday 22nd March – Interests and Obsessions

One thing that is often given a negative spin in descriptions of autism is the special interests or obsessions that autistic people usually have, with them being seen as more a curse than a blessing.

Special interests (henceforth simply interests) are frequently seen as a distraction, something alien and odd that is a curiosity at best, or a pathology at worst.  Indeed, the strength of an autistic person’s interests can vary hugely, but there is much that is positive.

These interests are usually defined as being unusually intense, based on ‘unusual’ topics or displayed in unusual ways.  And yes, there are autistic people who collect drawing pins or car registrations.

What isn’t appreciated is just how integral these interests are to an autistic person, and how fundamentally they keep us grounded, happy and calm.

They act as a life line, a refuge, a safe space or sanctuary where we can retreat when things get too much, or when we are exhausted or stressed.  Indulging in our interests gives us time to breathe.

And they’re really cool! I love my interests, and I never tire of them, which is great considering how much I rely on them to keep me feeling OK.

It is true that autistic people tend to be able to maintain focus and fascination in their interests more than what would be deemed ‘normal’.  It can seem tireless, with an autistic person devouring every morsel of information about a topic.
We can very quickly become experts in our interests, because we never get bored of exploring them.  I know more about the Titanic, volcanoes, the First World War, Pokemon, Lego and Harry Potter than I’m ready to admit, because they interest and calm me simultaneously.

If I’m bored, or stressed, or freaking out I can retreat back into my head and think about these things, and this helps so much.  I may construct a mental image of the Titanic or something, all to keep me on the level.

I don’t think this is a bad thing.

We also really want to share our interests with you. So, so much. Oh, and how infrequently you’re interested! This makes sense, as us autistic folk’s interest levels are a bit intense! But still, God we’d love to talk with you more about them.

Autistic children sadly tend to learn early on that no one shares their level of enthusiasm for, say, Sonic the Hedgehog. And so it’s internalised, kept to ourselves.  I’m not sure this does harm, but I do wonder if our social miscues would improve if it weren’t the case.

So if you deal with autistic children, please listen to them when they talk about their interests. It will make their day.  Ask them questions.  Care.

And remember that there is no harm to these deep obsessions and interests, and it’s a pretty safe bet that some of the world’s greatest achievements stem from an autistic person’s indefatigable interest in a topic.

You think Darwin’s minute obsession with the details of his theory was a fluke? That Newton’s intense curiosity in physics was ordinary? I reckon some of them were autistic, don’t you?

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