The #ActuallyAutistic Culture and Identity Project S7
Name, and/or twitter handle: Anonymous Pronouns: she/her
Parent/non-parent: Non-parent – hopefully a parent someday fairly soon!
Age when you self-dx/were diagnosed autistic: Professionally diagnosed at 30, but I was in and out of denial with a self-diagnosis several years before that.
1.Did you feel you were different from others as a child?
Oh my goodness yes. I was always the shy kid, the smart kid, hyper-sensitive, a ‘drama queen’, and a tomboy to boot (until about age 11 and then hello #AutisticMasking, I became hyper-feminine). Everyone else recognised that I was different too – parents, teachers, doctors – but it was the 90s and smart, quiet, verbal girls like me were never identified as autistic.
2.Are your parents supportive of you as an autistic individual?
They don’t know.
3.How did you determine your ethical system?
In true autistic fashion, I’m not quite sure how to interpret or answer this very broad question, and it’s a bit anxiety-provoking! (Having to formally study ethics in both of my professional degrees has scarred me. Too many grey areas in all those hypothetical dilemmas never worked well for my little old brain that craves certainty.) I think my general attitude in life is ‘Let people do what they want, as long as they’re not hurting anybody’. Which theory of ethics is that – consequentialism? I’m aware I haven’t really answered the question…
4.In which way does your private self differ from your outward facing front?
I’m way more ‘autistic’ on the inside, I suppose. I mask a lot, and as a late-diagnosed person I’m not really aware of where the masking ends and my ‘true’ self begins. I’m a health professional who works with people all day, and I love it. People tell me I’m highly professional, capable, sometimes 'bubbly' and generally seem to ‘have my s*** together’ in life. So I suppose people would never know what kind of weirdness is going on in my head, and how I struggle in my downtime. People can think you’re making it up for attention or sympathy or whatever. I’m also ADHD, so my brain is basically a YouTube poop, a mashup of different pop culture snippets (song lyrics, Simpsons quotes etc.), random facts and wonderings, and I’m very restless mentally – I need a lot of intellectual stimulation. I experience echologia, which is mentally repeating a word or phrase – basically an internal version of echolalia. The other day the phrase on repeat was ‘bivalve mollusc’; another favourite is ‘Csikszentmihalyi’! When I’m home alone I also stim a lot more – rocking, finger flapping, tapping my fist on my chest…not even my fiancé sees the full extent of it. And from all the masking/camouflaging I do around other people, I need a lot of rest. I’m a homebody and I really don’t do much on my days off – which is nice, but also gets lonely. When I was diagnosed this year, the clinician pointed out to me that I was deep in autistic burnout and probably had been for a few years, which was something I had been in complete denial about. So now, in my downtime, I’m trying to recover from that. Lots of couch time and sensory snuggles with my beautiful floofy cat, who sits on me so I literally can’t move – very helpful.
5.Do you enjoy finding mistakes/errors in the production of films and television...continuity etc.?
I wasn’t expecting this question but I like it! Um, not really – I don’t look out for them or notice them while I’m watching something. But I do enjoy looking at Wikipedia and IMDb after a movie (sometimes during - ADHD!) and reading about the continuity errors and goofs…
6.What are the top 3 traits you look for in a friend?
Genuineness, tolerance, and at least one or two shared interests/hobbies.
7.What are the top 3 traits you perceive as negative but are willing to overlook in a friend?
I can’t really think of many. Maybe…not replying to messages for days/weeks/months at a time? I might feel a bit rejected, but as long as people get back to me eventually, I get it and I’m OK with it. My executive dysfunction means that I do exactly the same thing to people, and I hope they forgive me. Um – what does it say about me and my friendships that I can’t think of any others…?
8.What are the top traits you look for in a partner/traits your partner possesses?
My fiancé shares my love of knowledge, random facts and utter silliness, doesn’t bat an eyelid at any of my autistic ‘quirks’, and when my executive function fails he literally keeps me alive by cooking and bringing me food and drink. He's an excellent cat dad, very smart, and loves animals.
9.What would you do with your life if you had unlimited funds?
Switch to a completely carbon-neutral existence (is that even possible? As close to it as I could get). I’d still like to work in the same field that I do currently, but I get burnt out very easily, so I’d reduce my hours significantly. And if my livelihood weren’t at stake, I’d love to be more involved in advocacy, calling out ableism and promoting neurodiversity-affirming practices within the medical, allied health and mental health professions. As a health professional myself, I feel so much responsibility, especially to future generations of neurodivergent kids, to give them a safer world to grow up in, as well as improving services for other adults.
10. What does freedom mean to you. What does it entail?
Too big a concept - so I want to talk specifically here about having freedom to be autistic. Being free to be autistic means not being ostracised or discriminated against because of your diagnosis or your autistic traits (because so many of us encounter bullying, ableism and discriminatory attitudes even when other people don’t know we’re autistic). For young autistics especially, it means access to early identification and supports that affirm autistic identity, rather than trying to erase or suppress it. I could write a book about my experiences of this from both sides – as a professional who for many years offered ‘treatment’ to autistic children, and as a ‘closet’ autist dealing with ableism within my profession every single day. I am planning on starting a blog about it.
11.What does success mean to you?
A concept that is totally overvalued in Western culture.
12. Are you more stable/happier/productive within the structure of a relationship...partner/good friend/long-term roommate?
Definitely! Being autistic and ADHD, I need routine like my life depends on it, but I struggle to maintain it on my own. My fiancé is extremely regimented in his routines (!) so this is a huge help. When I lived with housemates it helped having external accountability to get things done around the house – nothing like a bit of peer pressure.
13.Do you find it stressful to be around other parents at school functions? n/a
14.How often do you pretend to not see people you know if you don’t want to talk?
Pretty frequently. I’m also pretty short-sighted but I rarely wear my glasses, so I often genuinely don’t see people when I walk past them in the street. (Convenient!)
15. In which areas do you identify the most with other autistic people?
Two big things which are not in the diagnostic criteria but which I feel are a huge part of autistic culture: On the whole, we are the kindest, most genuine and accepting people. We don’t judge people because of race, religion, sexuality, gender identity and so on. We take each person as an individual, and most of us know what it’s like to be judged or misinterpreted so we take care not to do this to others. We also tend to be nonconformists which I think is such a positive thing! We don’t accept the status quo just because ‘That’s the way it is’ or compromise our values just to uphold some kind of pointless neurotypical social fabric. If we see injustice or something that just doesn’t make sense, we call it out! My autistic role models are Greta Thunberg and (2021 Australian of the Year, sexual assault survivor and activist) Grace Tame, who encapsulate this quality beautifully. They’re both younger than me but I’m just in awe of them.
16.What are the most stressful aspects of parenting an autistic child as an autistic caregiver? n/a
17.What are the top 5 things you want your children to know about the world and why?
(Although I’m not a parent yet, I’ve always worked with families and young people, which means I’ve thought a lot about what it means to bring life into the world, and my wishes for future generations even if I never have kids of my own.)
1. Not everybody has to like you; not everyone will – but when you find people who can accept you for who you are, it’s magnificent.
2. Our species isn’t any more entitled to live on this planet than any other – treat it kindly.
3. All feelings are OK. Some feelings are hard, but the big ones never last long.
4. Don’t try to grow up too fast.
5. (I guess this is specific to my own, as-yet-unborn kids, but I wish every kid experienced it:) You are loved, no matter what.
18.Does living off the grid appeal to you and why/why not?
Oh yes. See my earlier response about carbon neutrality! I grew up 6 kilometres out of a country town, so that lifestyle feels familiar to me. Whenever we drive through a remote area full of trees and quaint little houses and farms, I tell my fiancé I would love to live there one day (and he – an extroverted city kid – is horrified). Also, sustainability – growing my own food, refusing and reusing, and making things from scratch – is a bit of a special interest of mine. In reality though, I think you can only do it if you don’t need to work – being entirely self-sufficient is a full-time job and I would never manage it on top of regular work too. And I do like social interaction and I get freaked out by being on my own for too long, so…no. Maybe I should add to my ‘unlimited funds’ idea above: having a weekend house that is off-grid.
19.What is your favorite style of architecture and why?
I’m so glad you asked! I don’t know what it’s called - a lot of the historic buildings in my city are gorgeous bluestone constructions from the Victorian era. Next year I’m getting married in a big old bluestone house (actually built in the 1930s, but in an older style) covered in ivy – it’s just glorious. I’m more excited about the building than the party to be honest. I also like Gothic revival.