totallyautastic

[totallyautastic]

'what are words' starter pack

- “how are you?” “Yes.”

- no volume control. Yell or whisper, there is no inbetween

- what was this sentence about again

- clicking/tapping/’umm’ing furiously while trying to focus your mind enough to remember what the sentence was about

- stammering

- worse: spitting by accident

- i’m rambling about myself again how do I stop

- *says someone’s name once* *they don’t hear* “oh well guess that’s the end of that. we had a good run”

- rehearsing any kind of request, compliment, or any planned exchange a trillion times in your head

- writing out said exchange as a form of rehearsal, ums and errs included, so literally nothing is left to chance

- the inevitable sequel: why aren’t they following the script?!?

- the mind-wipe mid-conversation

- focusing so much on paying attention that you don’t actually process what they’re saying

[totallyautastic]

If you want some idea of how much autistic people struggle to understand allistic people when they don’t say exactly what they mean, take a cooking recipe and replace all units of measure with “enough but not too much”. For example:

enough but not too much white sugar

enough but not too much butter

enough but not too many eggs

enough but not too much vanilla extract

enough but not too much flour

enough but not too much baking powder

enough but not too much milk

preheat oven to hot enough but not too hot

bake for long enough but not too long

Even someone who’s experienced with cooking would probably struggle to follow that recipe. Now imagine if they had no experience cooking and had no idea what these ingredients are.

[totallyautastic]

GCSE results day

Well, it’s today in case you haven’t seen the news. If you’re picking up results today then I hope you got what you wanted. If you didn’t then remember there are options like retakes. You are not alone.  It’s been a WHOLE 20 YEARS since I picked up my results (on my way to Reading Festival). 20 years, but I am still hit right in the feels every year on GCSE results day.  I got OK results, better than I think anyone expected. I was told by most of my teachers that I would fail, as an attempt to ‘motivate’ me. Back then nobody knew I was autistic so mostly I was just yelled at and punished for struggling. But I passed all my exams and got decent enough results to get me on the college course I wanted to do (staying at school for 6th form was not an option, they made that clear to me).  So I passed my exams and I got into college. But 20 years later, my proudest achievement is this: I FUCKING SURVIVED.  Despite everything, getting through a tough, academic school with a reputation to uphold. I SURVIVED. There were times when I almost didn’t, there were times when I thought school would kill me. But I SURVIVED.  Despite everything life threw at me, I am still here. That’s nothing short of miraculous. To everyone else who feels the same way: Congrats. We made it! 

[totallyautastic]

I really can’t stand the message that people send to others - especially to disabled people - that ‘the real world is cruel and nobody’s going to help you’ in an attempt to foster complete self-sufficiency.

Because it’s not true. I honestly can’t do everything by myself, and neither can you or anyone else. Everyone needs help. Nobody can always be their own chef, doctor, mechanic, teacher, trainer, and counsellor all rolled into one infallible package of superhuman toughness.

It’s patently misleading to raise people to think that they have to learn to always fly solo. We’re a social species and we support and learn from each other. We shouldn’t be taught that it’s shameful or weak to ask for help.

Nobody can do everything alone and nobody should have to. Especially us disabled people.

[totallyautastic]

[totallyautastic]

Things that happen when you grow up undiagnosed, no. 32,952

AND ANOTHER THING that I just thought of today.  At Autscape I was describing the feeling of being tired after socialising and not knowing why because I assumed that everyone socialised in the same way I did.  When you do not know you are different, you assume that everyone experiences the same things in the same way you do. So if you get tired because you have to work 3 times as hard or if you have meltdowns then YOU BLAME YOURSELF. Because you believe everyone is having the same experiences and managing just fine, so it must be a personal fault that lies with you. This means over time your self-esteem just fades away to basically nothing and you end up really susceptible to mental health issues.  This is why it is SO IMPORTANT to identify if a child is autistic as early as possible and it is important to TELL THEM so that they don’t blame themselves for not being able to do everything in the same way as allistic kids.  TELL YOUR AUTISTIC KIDS THAT THEY ARE AUTISTIC.

[totallyautastic]

An ode to Autscape

OK, technically it is still on but I am not there today and I am pretty pissed off about it. This year was my first Autscape. It’s a conference by and for autistic people and it was the very first time I’d been around a lot of autistic people in real life.  OMG I wish I could live there. It was such a great atmosphere. At first I was a bit nervous about meeting people and didn’t know who I should talk to. Everyone has badges letting you know whether you can approach them and it was TOTALLY NORMAL to ask permission from someone if you can talk to them or not. Why isn’t real life like this? I got into the habit (or tried to) of usual gender neutral language for EVERYONE because there were no assumptions about gender (also I met shit tons of NBs, yay). Why isn’t real life like this? People were openly stimming, flapping, spinning etc. I wore my chewy necklace all day and chewed the shit out of it and no one cared. Why isn’t real life like this? Everyone was so accepting and sensitive about differences in appearance, speech, behaviour, everything really. Everyone was SO DAMN NICE. Why isn’t real life like this? I’m back at home now. Yesterday I was changing the world, today I’m cleaning up cat shit. Reality bites. I am already counting down the days to next year.

[totallyautastic]

We NEED to talk to our children about gender

I keep hearing complaints from other parents that they don’t want their young children learning about transgender people. Because HOW DO YOU EXPLAIN THAT TO A SMALL CHILD, it will just confuse them.  Well, that’s bollocks. I have explained it to my children (both under the age of 10) and they got to grips with it very fast. OK, it’s maybe not a 100% accurate or in-depth explanation, but you gotta tailor it to your audience. It went something like this: "Some people are born with male bodies but feel like girls inside. Some people are born with female bodies but feel like boys inside. Some people don’t feel like boys or girls or feel like a mix or somewhere in the middle.“ Children are very open and accepting of new ideas (until they are brought up to be otherwise). So explaining things matter-of-factly is pretty damn easy tbh. Like my eldest knew what ‘gay’ meant when she was about 3. It was way harder trying to explain homophobia.  If children grow up NOT knowing these things then it won’t ‘prevent’ them from being trans, any more than explaining it will suddenly throw them into gender identity confusion. Trans people exist whether your child knows about it or not.  And what if your child IS trans and they grow up not knowing that there is a word for how they feel, and that they are NOT ALONE? I spent most of my life, until quite recently, thinking that my gender options were man or woman and not really feeling like either one. If I’d known when I was younger that I didn’t have to pick either one then that would have been one less thing to worry about. I don’t blame my parents for it because back in those days (yes, I am prob old enough to be your mum) the idea of non-binary genders was not really out there in Western society. So please, parents. Stop acting like gender is this huge scary and confusing thing. It isn’t. If you don’t know about it, then that’s cool. You and your children can learn together. But hiding all this stuff from your children is not ‘protecting’ them. 

[totallyautastic]

Enough with the “Autistic with a hidden talent” stereotype.

I get why Allistics thought it was a good idea. Maybe they meant to say “just because you’re Autistic doesn’t mean you can’t have skills, look at Rain Man!”

I’m sorry, as an Autistic person I have license to say that it completely backfired.

You’re not saying “Autistic people can be smart” any more.

You’re saying “Autistic people owe us some sort of super talented to exist.”

Autistic people do not need to be geniuses to be valid (and I’m a top student myself, but I can still see the problem in this). Autistic people do not need to prove themselves to be extraordinary, or “work twice as hard” to get basic respect.

Autistic people do not need to be extremely talented in order to be appreciated, pass it on.

[totallyautastic]

Ableism is ableism

And I have seen a lot of it lately.  In many autistic groups I have seen things like: “I hate autism and I want a cure.” ”Being autistic is terrible.” “Being NT would be better.” And then people justify it by saying things like: “Not everyone is high functioning.” “Every autistic voice matters, not just the ones you agree with.” “You’re experience is not the same as mine.” “It’s not internalised ableism, it’s just the way I feel.” If saying you hate autism and you’d rather be NT is not internalised ableism, then what is? This is not about invalidating someone’s experience or feelings. This is not about agreeing to disagree.  This is about calling out ableism in every form and from every source. Ableism affects us all. This is about making the world a safer, better place for ALL autistic people. 

[totallyautastic]

Chewing gum is one of my biggest stims and it fucks me right off that people tell me to my face how disgusting they think it is.

hi yeah support people with oral stims!! for example

putting things in your mouth

chewing

repeating fun sounds

clicking/blowing air/etc

humming

feel free to add more but!!! support oral stims!!! esp. ones that make noise!

[totallyautastic]

I was diagnosed as an adult. Luckily I found the autistic community before I read much written by 'experts' and charities. Maybe it's easier for me because most of the stuff written about autistic adults is written BY autistic adults.

you know, I remember, as a recently diagnosed autistic child, researching my condition and finding out that there were debates about whether people like me could feel love

I remember seeing an article about the autism every day video and actually asking my mother if she’d ever thought about killing me (she hadn’t and was understandably distressed by this question)

I remember as an adolescent, looking through literature from the national autistic society and noticing that almost everything was about younger children, and wondering why it seemed like I wasn’t expected to grow up

If you are one of the people involved in spreading these kinds of messages, I want you to use your infamous empathy and think about how painful that would be, and think twice before you do that again. If you are an autistic person, kid or adult, who is just finding out how some people view you, then please don’t despair. There are plenty of people in this world, autistic and otherwise, who realise how wrong such ideas are, and who will accept you for you. You’re not alone.

[totallyautastic]

I have had days where every single conversation I’ve had has gone wrong. 

that autism feel when you accidentally use the wrong scripts

like, someone says to you, “goodbye!”

and you just reply, “thanks, you too!”

??????

[totallyautastic]

Letting go of the anger

I was 33 years old when I found out I was autistic.  THIRTY THREE.  That’s a lot of years where I was trying my hardest and still only getting half as far as everyone else. That’s a lot of years thinking it was my bad attitude that meant I couldn’t hold down a job. That’s a lot of school years thinking I was lazy, rude and couldn’t be bothered to do my work like everyone said.  When I first found out I was autistic I was SO FUCKING RELIEVED to finally have the answer I was always trying to figure out. I thought things would be brilliant from there on.  And then came the anger. Why couldn’t anyone see how much I was struggling? Why did they punish me instead of help me? Why did the one therapist I was sent to see at school blame everything on the fact that I came from a ‘broken home’ (it was mid-90s so divorce wasn’t uncommon)? Why did so many bosses hate me so much that they found reasons to fire me? Why did working full time stress me out so much that I was physically ill?  I started wondering what I could have achieved if I’d known from childhood that I’m autistic. Maybe I would have got better exam results. Maybe I wouldn’t have got kicked out of school. Maybe I would have gone to a better university. Maybe I wouldn’t have dropped out. Maybe I’d have a degree and a brilliant career. Or maybe the expectations placed on me would have been less and I would have felt less like a failure.  WHO KNOWS. That’s the point. Who knows. Over time I have become less angry. It’s not anyone’s fault that I fell through the gaps in knowledge. It’s not anyone’s fault that the school system didn’t suit me. It’s not anyone’s fault that employment is not for me.  Letting go of the anger and of the allistic expectations that hung over me for so long was a huge turning point. Now I feel free. I am autistic and proud of who I am and what I’ve achieved. 

[totallyautastic]

cashier: sorry for your wait. we’re short-staffed today

millennial: oh that’s ok no worries :)

 baby boomer:

[totallyautastic]

billionaire could give me %.01 of his wealth and change my life while he is virtually unaffected.

[totallyautastic]

I need help with this kind of thing from other autistic people: “I would take a cure if there was one available” “I hate my autism, it has brought me nothing positive” “You might be high functioning enough to enjoy life but not everyone is” “Autism is nothing to be proud about” “Condition/disorder/functioning labels/other pathologising language” I know this is internalised ableism, but how do I deal with it? One of my favourite online groups has become inundated with people like this. I know they are new but they will not be told that being autistic doesn’t have to mean being miserable. I want to help them see how brilliant it can be.