I used to be an autistic girl. Now I’m an autistic adult.
“Adapting to your special needs as a neurotypical takes up a lot of my energy every time we interact. Most of the time you do not even notice.” -- Polly Motvall, @pmotvall , Twitter
Do you make appropriate eye contact? How much is too much?
How do you feel when someone uses your name?
My eldest daughter is autistic; she got a formal diagnosis when she started secondary school, after being home educated until then. We knew before diagnosis, but didn’t need to formalise it until she needed services from the outside world to be adapted for her way of being.
I’m autistic; I realised this gradually, in spite of lots of people including autistic women saying I didn’t seem autistic, and I got a formal diagnosis of Aspergers a little while ago.
My mother, since my daughter and I have been diagnosed, is almost completely certain that she’s autistic. It explains so much about her life, the world she lived in, and the way she lives.
My partner is probably autistic. He varies between saying he is and not. He hasn’t sought formal diagnosis, because that takes a lot of executive function - what we used to call the Round Tuits.
My two best friends are autistic - one was diagnosed before I was, and one after. All three of us talked to each other about the process of self-diagnosis that preceded seeking formal diagnosis. We were friends years before autism was something we thought about.
None of us knew we were autistic five years ago.
We’ve all been autistic all our lives, but only the newest generation got to know this important thing about themselves while growing up. Autism isn’t something we developed, or grew out of. We learned various different strategies for coping with daily life, and they weren’t all healthy. I had several jobs where I created excellent, ordered systems so that departments or processes ran reliably and easily, but somehow I always needed up doing this to all the chaotic non-systems I encountered, leaving a trail of structure and clarity in my wake, until I completely burnt out. I was lucky in that alcohol and drugs were unsettling to me and instead of relaxing made me feel unpleasantly out of control, but I channeled that sensory-seeking energy into promiscuity and although I had an awful lot of fun and no long-term health consequences, I ended up in dangerous or unpleasant situations more than I wanted to. It could have been worse; I hope for my children it will be better.
“Them: "Don't let your autism define you."
Me: "I'm an autistic autist with autism. I like to autism autisticially."
*flaps away*” - @eremitpurpur “Anarkoautist”, Twitter
I really like being autistic. It sometimes seems to me that neurotypical people don’t get the same joy from things that I do - I learned recently that not everyone responds to certain music with genuine goosebumps and the hair on the back of their necks standing up, the scalp tingling, and shivers over their back as the hair there straightens too, in waves. I’m surrounded by people who don’t hear doors closing in the house next door, fluorescent lights humming, the noise a hairbrush makes going over a deep tangle it can’t quite reach… most things. People like this often assume I can’t hear what they’re saying, too. Oops.
“Certain intense shades of blue or blue-violet cause me an intensely pleasant sort of vertigo, almost an out-of-body feeling.” - @chiller, Twitter
There are people who have absolutely NO colours which make their legs fizz and their toes tingle. Not just only one or two - I know people whose responses to red or mint green are much stronger than their responses to chocolate brown or sage - but absolutely no strong physical reaction to any colour. There are colours which make my skin more sensitive and colours which soothe and quiet me. Hanging laundry so that each garment has colour-matched pegs isn’t just pleasantly orderly; it’s really lovely and satisfying, and choosing to rush the job and just use whatever pegs are first to hand leaves me slightly itchy unless I’m hurrying for something really good.
And there are people whose response to smells and textures are so muted they don’t mind at all badly finished seams, the texture of artificial silk, or the weird smell laundry gets when it’s done in a strange washing machine with the wrong detergent build-up underlying the smell of one’s own detergent.
I don’t know what that’s like. I can see that there are parts of it which are easier, but the idea is appalling.
Children Learn What They Live
Dorothy Law Nolte
If a child lives with criticism, he learns to condemn.
If a child lives with hostility, he learns to fight.
If a child lives with ridicule, he learns to be shy.
If a child lives with jealousy, he learns to feel guilty.
If a child lives with impropriety, he learns to feel shame.
If a child lives with tolerance, he learns to be patient.
If a child lives with encouragement he learns confidence
If a child lives with praise, he learns to appreciate.
If a child lives with fairness, he learns justice.
If a child lives with security, he learns to have faith.
If a child lives with approval, he learns to like himself.
If a child lives with acceptance and friendship, he learns to find love in the world
My mother was - and still is, obviously - autistic, though we didn’t know that at the time. But she knew and understood what it was like to be a child like me. I understood why the rules she gave us were what they were, and when they were guidelines. As an adult I was surprised to learn my friends had no idea why their parents had given them instructions but used to follow or not follow almost at random.
In particular, dressing up for a special occasion -- it was represented to me as a show of respect. Behaviour is communication, and clothes can be communication, possibly as much as words are. You wear something nice to visit Nana because you want to show Nana you care what she thinks because you love her, and tidy clothes are something Nana cares about. Other autistic adults I know were never given this level of explanation -- and resented pointlessly forcing themselves to meet apparently arbitrary standards. It does mean I only dress up when I care what people think about what I look like, which isn’t very often. Meeting the staff at my daughter’s school, mainly, or going to medical or bank appointments. I never developed a special interest in fashion, but I learned not to despise it, eventually.
My mother and I were both unhappy at school, for slightly different or largely similar reasons. We didn’t fit in, and we were hypersensitive to unfairness or injustice. I was way “ahead” academically and “behind” in other important way -- like toilet training -- which confused everyone and made people think I was misbehaving. I also couldn’t cope with the numbers of people; I was in classes of 30-40 children, in the 80s, and in secondary school classes of 24 or so, and I couldn’t keep track of that many people at all. When my daughter started school aged 11 I helped her make lists of all the people in her class, one day at a time, until she gradually built up a picture of who was there and which person was which. We were all bullied, of course - my mother fought her way home from school every day for years, I had a complicated set of targeted meannesses against me which adults thought I brought on myself and punished me for, and my daughter was started on by her peers, too. But nowadays adults intervene, and I felt allowed as a parent to tell the school she was being bullied and she and I both felt that she was entitled to feel safe in school. The school dealt with it and she is fine now. It seems like a small thing but it’s a massive social and cultural change - just asking neurotypical adults to have empathy with children who are atypical, rather than targeting them further, is world-changing.
My younger sister was very popular, and is probably not autistic. I wasn’t popular, but I did tend to have a very small number of intensely loyal friendships. I was never part of a gang or clique or in group, and so I never had to deal with the sea-change of being cast out. I did feel left out, until I worked out that what I wanted wasn’t the same as what other people seemed to think I ought to want.
“I do not perseverate about my special interests. I rhapsodize about my passions and expound at length upon subjects in which I am an expert.”
- Aria Sky, https://mamautistic.wordpress.com/2016/12/13/words-what-they-mean-perseverate-vs-rhapsodize/
We played the same games summer after summer, when I was a child. Pipecleaner people with a home inside a stone wall, whose language, religion, and social structure was worked out in detail. Fire-lighting; I’m still really really good at lighting and maintaining a fire, and pretty good at putting them out. I read constantly from as soon as I learned how (no-one knows when that was, but approximately aged 4, ish) and often played scenes from books. My eldest child does this too, and tries to instruct her sisters in how to play the other parts, which looks much less fun than I remember it being when it was MY favourite books. We played lots of games, and they all used imagination, and I preferred the organising and set-up phases to the pretending and acting out phases. I’m terrible at pretend games now; I do them, but I feel horribly self-conscious and my children can tell I’m not into it.
Reading all the time meant I learned things all the time, which was a problem at school. I was often bored, and when I found something I didn’t already know, I didn’t know how to go about learning it, because information was something I acquired accidentally as a side-effect of doing what I loved. I generally did well in exams, but dropped out without qualifications and worked in publishing and IT until I burnt out and became ill. Being a self-teacher was very useful in the dot-com boom. Having an eye for detail and a finicky aversion to error are both useful in both editing and coding.
I also read an enormous amount about people - novels and pop psych, mainly - and developed a level of empathy many people found uncanny. While interesting, this was a bit creepy and I don’t recommend it. Boyfriends were fairly confused by the intensity of my emotions anyway. But studying how people work is something I recommend to anyone, autistic or otherwise.
Listen, by Ogden Nash
There is a knocking in the skull,
An endless silent shout
Of something beating on a wall,
And crying, “Let me out!”
That solitary prisoner
Will never hear reply.
No comrade in eternity
Can hear the frantic cry.
No heart can share the terror
That haunts his monstrous dark.
The light that filters through the chinks
No other eye can mark.
When flesh is linked with eager flesh,
And words run warm and full,
I think that he is loneliest then,
The captive in the skull.
Caught in a mesh of living veins,
In cell of padded bone,
He loneliest is when he pretends
That he is not alone.
We’d free the incarcerate race of man
That such a doom endures
Could only you unlock my skull,
Or I creep into yours.
What do I wish I’d known
A friend once said to me, “I wish I’d had as much praise when I brought home a new friend as when I brought home an A.” I wish I’d known that the number of friends I wanted to have was the right number to want to have. I wish I’d known that friendships take a little bit of work - that it’s important to send out the “I care” signals like birthday greetings even when you’re not in regular touch, for example if you are School Friends but their birthday is in August. I wish I’d had someone to externalise a lot of the things I do for my daughter - executive functioning tasks like organising school books and workload, planning homework and so on. This comes almost naturally to some people, but only the plan-design aspect is natural to me; following through was almost impossible. We’re in constant contact with the school about this, because if they support children developing these skills everyone will benefit in the long run.
I wish I’d learned how to say No, so that I could excel at work without taking on so much that I made myself ill. I know so many autistic adults who have been in abusive employment situations because they know they CAN do the tasks but don’t take into account the limitations of the meat sack in which their brain is carried around all day.
I really, really wish I’d known I am autistic.
I wish I’d known that a lot of my strong preferences were actually needs I was accustomed to leaving unmet.
I wish I’d known that I would stop being an adolescent and as an adult I could have autonomy, support, friendships, and a family life full of laughter, silence, hugs, and blissful solitude. I wish I’d known how happy it was possible for me to be.