1. Let us decompress in quiet areas when we need to. Our desire to be alone is not judgement on you, it’s simple self preservation.
2. If you need us to do something, give us very clear, unambiguous instruction. Don’t feel like you’re being rude doing this, but don’t sound irritated or patronising!
3. Do not expect us to react to things in a way you would expect. That way lies disappointment. We often show our emotions in very different ways to what you might expect.
4. Don’t assume we aren’t capable of thought and feeling if we’re non-verbal. Don’t assume we’re incapable of communicating in other ways either.
5. Don’t expect autistic children to ‘grow out of’ being autistic. They just won’t. That doesn’t happen.
6. Don’t force us to wear particular clothing if we have a visceral negative reaction to it – it’s texture or fit might be causing *significant* discomfort and unhappiness.
7. Don’t be upset if we don’t wish to socialise with you, as we often have considerable limits in our capacity. However do ask as generally it’s nice to get the opportunity.
8. Check in on autistic people from time to time. Don’t be upset if they don’t respond quickly – all socialising is stressful and many of us are very forgetful and disorganised!
9. Don’t use banter or negative insulting humour to autistic people, unless you know they’re OK with it from you specifically. There are maybe four people on earth I can be jokingly insulted by without panicking that they mean it.
10. Remember all autistic people have a very different experience of autism – it’s a huge, varied grab bag of traits so any list like this has to be taken carefully.
11. Don’t force us to make phone calls. Phone phobia is common for many autistic people and it can be *very* serious. If there’s an alternative let us use if without judgement.
12. Don’t force eye contact. Many autistic people find eye contact way too intimate and emotionally draining so they’re not gonna want to do it with their boss or a
stranger. We are still listening.
13. Let us stim! These movements, sounds of activities are great for regulating our stress levels and are absolutely vital. Unless we’re hurting ourselves or others, let us be.
14. Talk to us and listen to us about our special interests. It may be a bit of an info dump but believe me, be a safe listener and we’ll appreciate it so so much.
15. Let autistic people play with their toys however they want.
16. If an autistic person forgets something, don’t be too harsh on us please. It’s hard to remember stuff when just surviving is tricky.
17. Remember that many autistic people have comorbid conditions – from depression to intellectual disabilities. Be sensitive and assume nothing.
18. Don’t infantalise autistic people – we’re not big kids or babies, we are adults with agency and minds of our own.
19. Don’t spread misinformation about autism and call it out when you see it – eg autistic people having no empathy and so on.
20. Pay attention to our pronouns and language. Many, many autistic people are in some ways non-binary, trans, queer or asexual, or more. Again, assume nothing and *listen*.
21. Don’t assume we’re ‘high functioning’. That language can go in the bin. We may well be good at some stuff but behind the scenes you don’t know how difficult we find life.
22. Don’t treat ‘autism’ or ‘autistic’ as if it’s a dirty word, avoiding it with euphemism.
It’s really fucking annoying.
23. Give opportunities to autistic people, if you’re in the position to. We’re frequently in the creative arts thanks to our brains, and being given chances can change everything.
24. If you want autistic people to do stuff for you, pay us as you would non-autistic people.
25. Don’t force an autistic person into a situation they’re uncomfortable with unless you know they’d rather you help push them. You have no idea how scared we may be.
26. Let autistic people follow their routine as much as you possibly can. It helps lots of us immeasurably most of the time and doesn’t usually cost anything.
27. If an autistic person has a meltdown or shutdown, give them space and don’t judge them. Be kind. Let them rest afterwards.
28. Don’t tell anyone who identifies as autistic that they’re not autistic. First, you have no idea, second, your objection is probably based on incorrect stereotypes.
Third, it’s rude.
29. Give us processing time to answer when you ask us things. Even if it seems an easy question.
30. Above all, follow loads of autistic accounts on here, Facebook, YouTube etc and see what they have to say.
Halloween Masks
Halloween is a time of masks, and these masks are meant to scare people. They are meant to force us to acknowledge the mystery and terror of the unknown, and people wearing them are celebrated and have sweets and chocolates as rewards.
My mask is the exact opposite. I wear my mask to reassure people, to make people comfortable within their acceptable parameters, and to keep myself safe. I wear my mask to hide the unknown, so it doesn’t upset people. I wear my mask to hide being autistic.
And my reward? Well, I don’t get bullied so much. People don’t ostracise me as much as I know they would if I removed the mask. Oh, and I also get severe anxiety, depression and a sense that I have no identity behind the mask anymore, after so many years.
Most autistic people mask. We have to, and generally speaking it is mostly an automatic self-defence mechanism that we develop in early life. It is not a manipulative tool, whereby we act ‘normal’ in order to ensnare people and force them to spend time with us. It is a means of survival, of avoiding negative attention and staying safe in a world that is extraordinarily hostile to any form of difference – especially if that difference is not understood.
For what lies behind the mask isn’t grotesque, or physically disgusting, or foul – what lies behind is simply a different way of experiencing the world (primarily sensory, attention and social) that is extremely poorly understood. Most typical autistic behaviours, from stimming to info-dumping, are just mysteries to the majority of people, who respond the way humans always do when confronted with something we don’t understand: fear.
So we wear our masks this Halloween, like every other day of the year, to not frighten people but to calm them and to keep ourselves safe and secure. Our life’s battery and mental health are drained daily by this masquerade, exhausting as it is, and we suffer as a result. And that is why I’m here, and countless other autistic writers and advocates. My books exist to try to remove this stigma of the unknown, to educate everyone so that perhaps, one day in the not-so-distant future, autistic people can be confident that their autistic-ness won’t be met with fear but understanding, acceptance and love.
Ghosts, vampires and ghouls will always be the unknown, and always be frightening. Autism doesn’t have to be.
Autism Research aways seems so far behind community experience.
Once you’ve been aware of being autistic for a while, there are patterns you begin to notice. I remember realising, for example, that autistic people are pretty much always infantilised by professionals – especially doctors and social workers. I also recall the first time I noticed that autistic people were very poorly represented in the media, with stereotypes dating back to the 1940s at centre stage.
Another thing we’ll all notice eventually is the curious lag of research into autism, compared to what autistic people report openly of their own experiences.
Research often lags behind anecdotal evidence. It kind of has to, as the scientific method promotes rigour and detail, which is slow and painstaking. So to an extent I can understand this lag. However, autism research almost always boils down to measuring autistic peoples’ experiences, often by simply communicating with us in methodologically controlled ways. So why such a lag when it is the anecdotal that actually forms the bulk of the evidence?
I write this in a slightly irritated mood, in response to reading some research from last year which declared that autistic interests might actually be beneficial to autistic people. This was published in May 2021.
I have been personally extolling these virtues of special interests since at least 2018, and mostly as a result of listening to other autistic people’s thoughts on the subject dating back probably a further five years. I even wrote a book about the topic, which was mostly written around the time the research was published, and the idea for the book had existed since early 2020.
There is a definite and bothersome delay when it comes to the scientific community’s understanding of autism and it is a natural result, in my opinion, of their pathological model. Everything to do with autism is inherently viewed as bad, until proven otherwise. Not neutral, as you might expect, but actually bad – a deficit, a problem, a challenge to be righted.
Then, eventually, with tremendous groans and shrieks of resistance from the establishment, thoughts turn to the novel idea that maybe autistic traits have positive aspects – snd the autistic community shrug their shoulders, in unison stating, ‘no shit, Sherlock – if you’d listened to our giant collective literature (there is so much autistic writing out there, formal and informal – it’s really quite amazing) then you’d have had this as your damn baseline hypothesis’.
We’re used to not being listened to, of course. It’s just very galling when the researchers manage to light upon basics that we already take for granted, and act like it’s some incredible new take on autism. It’d be like someone excitedly proclaiming in a national newspaper, “extra extra, read all about it, enjoying hobbies is a positive thing in life!”
Laughable, isn’t it? Well that’s how it feels for the autistic community when research finally catches up to us, all because they are running to catch up from an unnecessarily regressive position, and refuse to do the simple thing of listening to us.
Things I Love About Being Autistic…
1. I spot patterns really easily – I can’t really help it. This has really helped me understand a lot about the world and is part of the reason I understand what being autistic is all about, I think.
2. When I’m in the ‘zone’ my hyperfocus on something I’m working on can be very useful. So long as I remember to eat and drink, I can be pretty productive.
3. I enjoy being hyperlexic – obviously it’s a big reason I’ve become a writer and speaker, and I love messing around with language and trying to create sentences that work as well as possible.
4. I love being part of the huge online #autistic community. It’s a place where so many autistic people have finally found a sense of belonging and acceptance, and I’m proud to be a part of it.
5. I like the straightforward nature of natural autistic communication. Yes it clashes with the neurotypical majority but I appreciate it for what it is.
6. I love my hyperfixations and special interests, and how calming they are, and how much joy I find in them. So much more than just hobbies, they literally make me able to face the day.
7. I don’t like my executive dysfunction much but I do like how it feels when I overcome it and get myself all organised! It can happen, and occasionally does.
8. I love the safety and secure feeling of a good routine – one that really works for me. It is a port in a storm, a haven from the stresses of being on this weird planet.
9. Though it can be tiring, I like having that strong sense of justice that so many autistic people report. It can create sense out of a nonsensical world.
10. I like autistic friendships and how they work on such a long timescale without necessarily needing constant tending to thrive. Also the companionship of fellow autistics, whose brains work in similar ways, is a real comfort.
How Meltdowns Affect Autistic People
After an autistic meltdown, things can take a while to get back to normal.
Firstly you’ve got the physical ramifications. For me, meltdowns are exhausting because it feels like every muscle tenses up, often accompanied by stimming that can be a bit more… intense than usual. The stimming, I guess, is a desperate attempt to recalibrate but I find its usually overwhelmed. After the meltdown eases, my muscles feel like I’ve run for miles whilst fighting an ostrich or something. This deep exhaustion can last for a few days. On top of this you have other physical issues. As I’m prone to migraines anyway, I can more or less guarantee I’ll have a migraine the next day, probably as a result of the exhaustion and tense muscles. This means the misery drags on.
Then there’s the emotional side. As you may expect, exhaustion spreads to emotion too, and I’ll often feel lacklustre and unable to focus or do much for a day or so afterwards. And the embarrassment and shame can be intense. If a meltdown is in public, then it can be a nightmare to deal with these feelings afterwards. Trouble is, you know that everyone will assume you’re just weird or tantruming because, let’s face it, no one knows enough about autism.
Even if the meltdown is private, these feelings can persist, usually as a result of internalised ableism where we have absorbed this judgemental attitude and thus apply it to ourselves. This can manifest in feelings of uselessness, anger towards your own ‘feebleness’, destruction of self esteem snd a feeling it would be impossible to ever truly achieve anything. It’s no wonder so many autistic people get depressed. It takes time to unpick this ableism directed at myself, but it can be done if there is increased acceptance of my own disability. I’m in the process of this.
So what can be done to avoid all of this?
Well the best thing would always be a general population who understood autism and therefore accepted meltdowns for what they are: a person hitting their stress ceiling. Everyone has a stress ceiling, even neurotypicals. They meltdown too when they hit it. It’s just we autistic people exist always just below our ceiling, so it doesn’t take as much to smash into it.
Another thing would be for those around to allow the autistic person space, to let them go cool down and be alone to work through it, rather than get in their face and exacerbate everything. You see this often in schools where an autistic child in meltdown is continually attacked by their teacher or other staff. Just leave them alone!
Meltdowns are very frequently the end result of an autistic person being pushed beyond their capacity for stress. This is common in environments that are not set up (at all) for neurodivergent people. So, logic suggests that any effort to make an environment (school, home, work, public places) will have a knock-on positive effect on the frequency of meltdown. This can only be a good thing.
So learn about how to make spaces safer for autistic people, and improve our quality of life.
Autism and Communication
A lot of an autistic person’s anxiety and trauma (often so bad that it is disabling in itself) comes from repeated experiences of communication going horribly wrong due to the different ways autistic people and non-autistic people communicate.
I often use the analogy that autistic people are using a different operating system to neurotypical folk, and that communication between them ends up being like trying to get a Windows computer and an Apple IOS mac to talk to each other. The will is there, but in practice there are loads of issues that pop up because we’re almost speaking different languages: at the very least, we view aspects of language, like body language, implication and sarcasm, very differently. And the onus is placed firmly on the autistic person to make up for this shortfall. We will, after all, be more aware of it, and we know that non-autistic people tend to be pretty oblivious to the need for compromise on this. As such, the autistic person in the conversation shoulders the burden of ‘translation’, which is hard work. It’s exhausting, and things will start to go wrong. Not least because the unwritten rules we’re trying to follow are so opaque and strange.
Non-autistic people seem to be able to communicate with each other on a kind of automatic-mode. We autistics, in comparison, when trying to talk to non-autistics, are very much on manual. We have to think carefully about every word, every sentence, as we know how changeable and hidden the rules we’re having to adapt to are. Nothing comes automatically; everything is hard work. Something is bound to go wrong, and when it does, it is almost always seen as the autistic person’s fault. After all, our communication style is labelled as an ‘issue’ or ‘deficit’, as ‘atypical’ or ‘challenging’. Its pathologised.
Let’s look at an example. Imagine a situation where an autistic person has accidentally interrupted a non-autistic person. The non-autistic says “hi, can I help you?’, their voice coated in sarcasm. The autistic person sees this as an invitation and begins to talk.
Now, this isnt an autistic person not knowing what sarcasm is. It’s an autistic person not recognising it in the moment. Two very different things. Now the autistic person will be blamed for not picking up on the implied meaning. They will likely be viewed as ‘weird’ or ‘rude’ because they missed the sarcasm. All responsibility will be shouldered by the autistic person who is *already stressed by following rules they don’t understand*. The sarcastic neurotypical will be blameless. The two communicative operating systems have clashed and the autistic person suffers as a result. And it would not be a one off. This kind of misunderstanding is happening *all the time*. On a bad day, I have definitely had 4 or 5 of these incidents occur, often in quick succession. Multiply that over and over to get a sense of how much blame autistic people are expected to take on.
By the time an autistic person is 25, they will have been blamed for hundreds, if not thousands of miscommunications. These may have resulted in lost friendships, bullying, lost opportunities, arguments, fights…
They’re traumatised. And a lot of this comes down to ignorance. The neurotypicals are blissfully unaware that there is a problem. They just carry on as always. If educated, then things can change. If educated on the basics that they are sharing a world, a school, a home, a workplace with people with a significantly different communication style, then maybe they can start shouldering the burden of compromise.
Maybe then they will work as hard as the autistic person does to make sure the communication works and meets in the middle. Maybe then the colldctivd autistic trauma will begin to lessen. Maybe
Elon Musk and Autism
On Saturday night, Elon Musk announced live on US television that he was diagnosed with Aspergers syndrome. Autistic Twitter exploded into a binary set of oppositions in response to this. Some argued this was excellent exposure and would help spread the good word about what autism is, and how autistic people have plenty to offer society. Others, like myself, voiced fear of what this extremely polarising figure would do to the always-fragile public perception of autism.
We have just left behind April – traditionally a very stressful month for the autistic community, as the wider population suddenly gains opinions about autism for World Autism Awareness Month, and shares them with neither knowledge or understanding. So we are a slightly fraught, exhausted demographic right now. For those of us who work to improve understanding of autism, our lives are filled with trying to eradicate myths, clear up misunderstandings and clarify information so that the general public has a more accurate and fairer concept of what autism is. These days I have literally dedicated my working life to it. And so the news that Musk has suddenly become one of the more famous ‘faces of autism’ came as a shock and, frankly, a disappointment. Public perception of a thing is massively influenced by celebrities. It’s interesting that a lot of very positive strides in the field of advocating autism came at the same time as folk like Greta Thunberg and Chris Packham went public with their diagnoses (crucially both Aspergers). These two individuals, and others such as Anthony Hopkins, Jack Monroe, Marina Amaral and Dan Aykroyd, have helped detoxify the publics perception of autism, which is far too preoccupied with old tropes based on Rainman and the use of ‘autistic’ as a playground slur term.
So the arrival of Musk on the scene is, in my opinion, less than welcome. I am not suggesting he should keep quiet, nor that he should not count himself as autistic. More, I am simply exhausted and afraid of what might follow.
There is a potential here for lots of good work to be partially undone, simply because autism and Musk might become inseparable in the public eye. If that happens, the autistic community will suffer. Why? Because many of the tired old stereotypes of autism (or rather aspergers) being a white male thing, obsessed with science and technology, abrasive, rude and prone to massively unhelpful comments (see Musks words on the diving expert who helped the trapped kids a few years ago) will all come flooding back into focus, pushing advocacy attempts back by several years.
Admittedly this may not happen. Musk may not become a posted boy for autism. But the potential is there, and it is that I am afraid and upset by. The fact there is a demographic who would benefit from this – the male aspergers orientated ‘autistic dark web’, who spend their time disparaging autistic women as fakers and attention seekers, and the neurodiversity movement as a sham, make the situation even more febrile and stressful.
So no, there’s no gatekeeping here. Just concern about what may come to pass as a result of this.