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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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