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The #ActuallyAutistic Culture and Identity Project S43

Name, and/or twitter handle: Holly Smale @holsmale

Pronouns: she/her

Parent/non-parent: non-parent

Age when you selfdx/were diagnosed autistic: 39

1. Did you feel you were different from others as a child?

Very much so. I knew on my first day of nursery, aged three. I was sitting in the corner, on my own, facing a wall and teaching myself to read, and I looked out of the window at the other kids playing together in the sun and thought: huh. I knew, with absolute certainty, that I wasn’t one of them. There was no shame, though: just curiosity and acceptance. The shame came later.

2. Are your parents supportive of you as an autistic individual?

My diagnosis has actually allowed my mother to identify as autistic as well. I think one of the reasons I was missed was I was ‘so like her’, and Mum was just seen as an eccentric, academic type. It was only after reading the piece I wrote for The Times that she saw herself, and she cried her eyes out: she said she’d never felt ‘seen’ before.

Both my parents have been very supportive, although at first a little shocked and resistant. My dad was actually the big surprise: I thought he’d be upset - even embarrassed - but it seemed to make a lot of sense to him straight away. He was my primary care giver as a baby, and he said he’d known from my first week I was different to other children so it seemed obvious, with hindsight.

It has definitely made me feel like they understand me better now, and has allowed us to communicate more easily. My relationship with my mum is stronger. We’ve historically clashed dramatically, and now at least we both know why.

3. How did you determine your ethical system?

It’s never felt like something I’ve had to think about: my ethical system is very instinctive and quite defining for me, and has been since I was small. In fact, my moral barometer is so strong it’s physical: my entire body responds to ‘right’ or ‘wrong’, and I regularly become literally sick, disorientated or confused if it’s the latter. I’m extremely rigid about it - there’s rarely a grey area in my mind, and I find morally ambiguous situations upsetting.

Although it’s also strange to me that this is part of the ‘deficit’ medical model of autism. It seems to me like essentially admitting that neurotypicals have vague, inconsistent and easily discarded morals, and yet… we’re the problem.

4. In which way does your private self differ from your outward facing front?

A lot of people don’t realise that I’m voluntarily and involuntarily non-speaking, 95% of the time. Because I can be quite eloquent and loquacious when I’m around people - often because of anxiety - people assume I'm chatty all the time. It’s actually the opposite. I live and work alone out of choice, largely so that I don’t have to speak at all unless I choose to, and often because I am unable to. I can go weeks (months, sometimes) without speaking at all, and that’s not something other people see.

I’m also very self-contained and a ‘lone-wolf’: I don’t get much joy from interaction with other people, except for in select and small doses. I do have a genuine soft side, but it’s reserved for a very few specific people. Sadly I learnt at a young age that this stand-offishness results in a lot of abuse and pain, so I’ve learnt to make my public mask more sociable and genial than perhaps is natural for me.

5. Do you enjoy finding mistakes/errors in the production of films and television...continuity etc.?

Absolutely. Also in books - I am not sure I’ve ever read a published novel that doesn’t have at least one typo or inaccurate punctuation mark in it. It’s not one of my most attractive qualities: I’ll triumphantly correct people even when I know it’s going to cause problems, for them or me. I was the kid writing letters to museums because one of their signs had a punctuation mark in the wrong place.

6. What are the top 3 traits you look for in a friend?

Consistency, non-judgement, humour.

7. What are the top 3 traits you perceive as negative but are willing to overlook in a friend?

Clinginess, extroversion, loudness.

8. What are the top traits you look for in a partner/traits your partner possesses?

Calm, consistency, humour (they’re pretty much the same as for a friend with an additional layer of calm).

9. What would you do with your life if you had unlimited funds?

I’d probably do an elevated version of my current life, to be honest. I’d build a beautiful house with lots of huge windows in the middle of somewhere very quiet and beautiful - mountains, lakes, trees - and I’d read and write, listen to music and take long walks. Then - every few months - I’d go on an adventure somewhere interesting in the world. I essentially do that now, but at a lower grade and far less luxurious level.

I’d also move all my loved ones into beautiful houses at just the right distance away: five miles or so, so I can see them when I want to but not when I don’t have to and they don’t block my view or interrupt my peace.

10. What does freedom mean to you. What does it entail?

Freedom to me means being able to be who I am without judgement, without abuse, without micro-aggressions, without criticism, without verbal observation. It’s only since my diagnosis that I’ve started to realise exactly why my life has been so packed full of those things: as my therapist once said to me, “I don’t think I’ve ever spoken to someone who is described to you as often as you are”.

It certainly feels as if my existence has been packed full of other people’s labels for me. “You’re very…” always makes my heart crumple: it’s always followed by what neurotypical people think is an astute and clever observation but is actually a painful micro-aggression aimed at my ‘difference’.

Freedom to me means being able to exist without people pointing out the ways I am unlike them, and why that is wrong.

11. What does success mean to you?

Success to me means being paid well to do what I love, and getting recognition for it from those I respect.

12. Are you more stable/happier/productive within the structure of a relationship...partner/good friend/long-term roommate?

Thus far in my life journey, I’m definitely more stable, happy and productive alone. I do have a sister who I’m very close to - and the stability of that relationship (or the instability) makes a huge difference to me - but as a general rule I find it much easier to relax and feel free and myself when it’s just me. I find other people too inconsistent and confusing: in relationships, I tend to get lost. It takes me a long time after a relationship to find myself again.

Which is not to say that will always be the same: I may meet someone who changes that for me. But so far it hasn’t happened. My diagnosis has changed a lot for me, though, so it may be something I discover in my future.

13. Do you find it stressful to be around other parents at school functions?

I’m not a parent, but yes - I’d find it enormously stressful. Forced into social situations with strangers? No thank you.

14. How often do you pretend to not see people you know if you don’t want to talk?

All the time. It’s often not conscious: when I’m nonverbal and literally unable to speak or make eye contact, if I see someone I know I’ll panic and pretend I haven’t. Also, if I see somebody I don’t like I find it almost impossible to either be rude or to fake politeness, which leaves me in limbo, so I’ll panic again and stare at the floor again. It’s not a particularly cunning plan - I frequently get called out on it - but it’s an instinctive reaction that I don’t appear to be able to control.

15. In which areas do you identify the most with other autistic people?

Our total candour.

That’s what’s been the most refreshing thing about interacting with other autistic people: how honest we are with each other. I find I can mostly communicate as I want to and be understood, without trying to translate it into something ‘socially acceptable’ first. It’s so refreshing, and you don’t realise the layers of stress and effort that go into normal communication until you remove them.

I also really connect with our hyperfocus and passion. When an autistic person goes into a fully-fledged monologue, I really enjoy seeing how passionate they are about their special interest. And if our interests align? It’s so fun and rare to be able to really delve deep into something that fascinates both of us equally.

16. What are the most stressful aspects of parenting an autistic child as an autistic caregiver?

I am currently childfree by choice, as I just don’t feel equipped with the skills that would make child-rearing - on balance - a beneficial experience for either me or any child I might have. I spend a lot of time with my little niece, who I love completely, but I struggle immensely with the noise, the chaos, the mess, the multi-tasking, the mundanity, the constant cleaning, the lack of time to focus on other things that give me happiness. I get snappy and impatient, and - when I’m overwhelmed, which happens quickly and often in a stressful environment - I shut off and become distant and cold, which makes me feel guilty and unhappy and is unfair on the child. Childcare also physically fries me, in a very bodily sense, and takes me literally days to recover or function again.

I’m not particularly sad about the path I have chosen. I have children I love immensely in my life, and I get to enjoy them and spend time with them without being destroyed by the elements of parenthood I find so difficult.

17. What are the top 5 things you want your children to know about the world and why?

I want all children to know -

- How people treat them does not define who they are.

- Be proud of the things that make you different.

- It’s okay to say ‘no’.

- You get to choose your own labels.

- Choose your own path, rather than those of others.

18. Does living off the grid appeal to you and why/why not?

Short-term, yes: I’ve done it in short bursts, and the peace and calm do wonders for my mental health. Long-term… I think I need my creature comforts. I need my hot baths and TV shows, my food delivery and my access to restaurants. My executive functioning also just isn’t good enough to live off-grid: I’d forget what I was growing or what I was building, everything would fall apart and I’d end up having to hot-foot it to Waitrose.

19. What is your favorite style of architecture and why?

I don’t have a particular favourite: I’m fascinated by architecture in general. Modern architecture is so calming and peaceful - clean lines, simple colours, it fills me with peace - but I also love the intricacy, cosiness and stimulation of more intricate styles like Gothic or Baroque, or the grandeur of Ancient Greek or Medieval. It depends on what I’m craving on the day. As long as I consider it interesting or beautiful, it feeds my soul and I love it.

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