Chapter 6 – Building an autistic life

Divergent design questions

What are some textures that ground you or your senses?

I enjoy texture, ribbed fabrics, knotted fabrics, this with grooves in. They feel soothing to stroke. I don’t like the feel of plastic. I like to touch cold metal or stone to my face. I like playing with the chain on my necklace, or scratching the edges of my jewellery on my wrists. I like to tickle my wrists and face with textures.

I love my succulents at work because they have soothing nodules on the leaves that relax me to stroke and touch with my fingers.

Do you enjoy a minimalistic, spare space, or a cozy space filled with familiar objects?

I often don’t think to dust, so whist a minimalist space might in theory suit me, I actually need things around me.

I like my Lego figures around my desk to play with and arrange.

I like to see photos of people I love and care about around me, and the places that I’ve been. I like nick-nacks that reflect my interest (Star Trek and Star Wars).

I like to have a story with objects, to know where they were obtained or who gave them to me.

What smells do you find relaxing? What smells invigorate you?

I love the smell of lavender, that is relaxing. I enjoy frankincense also. A light smell of dog manners me feel like I’m at home (although I don’t like the smell of wet dog – who does?).

I love the smell of the wet earth on a warm summer’s day, the smell of the sea, and the smell of daffodils in Spring. These all being me life and hope.

Do you enjoy din light, colourful lights, or bright white lights?

Bright white lights but my eyes. I enjoy warm coloured light, oranges and reds, when at home. I love the green light of the forest, and the blues and yellows of the seaside.

I wear sunglasses to take the edge off the sun’s brightness.

What objects do you enjoy holding or having near you?

As mentioned earlier, I love my little Lego figures, and my textured succulents, and my many-storied nick-nacks.

Do you need background noise in order to focus? It’s there an ancient noise in your surroundings that you need to block out?

I can enjoy the radio in the background, but the chatter can be distracting sometimes.

When I need to concentrate, Listening to classical music can energise me enormously, especially when I am in a creative of problem solving flow-state. Beethoven symphonies and piano concerti are the best.

However, when I really need to concentrate and the real at hand is difficult, or my brain is resisting, then I need silence.

Do you hold onto any objects or furniture or if a sense that you “should” appreciate them? If you could let go of those things, what might you want to put in their place?

Not especially, however I keep hold of sacred family artifacts, which I suppose is the same thing. Treasures inherited from my nan and my mum that I cannot let go of. Most of them are in the attic, say they’re not crowding the living space. Some if those I would like to put it somewhere.

Radical visibility

I’ve been “out” as a gay man for nearly thirty years. Kim many ways I have been “successful”: I have a good job, I own a house, I have a husband (regular readers will know about the bumpy ride in my marriage). However, for years I have presented as the happy homosexual.

I felt obliged to be visible to show closeted gay brothers and sisters that is ok to be gay, and that one can be happy and proud.

I also felt obliged to show those who would do the gay community down that we can be conventionally successful and they needn’t be afraid.

To that end, I wear rainbow bracelets, ear studs, and necklaces. I regret have a rainbow paint-splat tattoo.

My husband has similarly celebrated his sexuality is a very public way.

The world – at least the United Kingdom – has changed a lot since either of us came out, and maybe a tiny bit of that change is the refusal of people like us to hide.

I made a similar decision about becoming a eunuch: I was not going to hide in shame. I’m less open about it with colleagues and family members that I don’t trust so much (including my dad), but most of my friends know, and I am very viable online.

I wear my eunuchorn t shirts, and on the 5th February (the anniversary of my surgery), I’ll be getting a highly visible eunuchorn tattoo.

I hope to create more awareness of the genitally diverse amongst the non-binary community.

I feel that is the same with disability. Don’t hide it. Don’t apologise for it. Be proud in that part of your identity and engage with it.

Chapter 7 – Cultivating autistic relationships

Infodumping

As soon as I read this word I knew what it meant. I knew that I used to do it to make connections, and that I stopped doing it in real life because people don’t like it! There freak out if you share too much all at once, whether it’s personal information or a special interest. Even my husband glazes over when I shared too much about something I’m interested in.

I suppose that’s kind of sad really, that an aspect of my personality I’ve trained myself to dial-down to make me easier for other people to be around.

Except in the online world, where I really don’t seem to have any difficulty saying anything. Maybe it’s because I can’t see the eyes glazing over, or maybe it’s because I’m in a world where people are more likely to at least tolerate my interests, and possibly seven share them – to be sure, I live in a community of eunuchs where everybody is interested in the same thing!

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Filling the vacuum

As I was reading, the author mentioned that often people call meetings because they have a vague idea that a problem needs solving, there is no agenda, and therefore no outputs. The group will talk round in circles, and the author said that she was desperate to get out of the meeting. In those instances, she would take a lead and use her need to organisation and structure and her analytical brain to help the group either exit or go somewhere.

As I read that, I released that I have so often done this: I have been in a meeting or a team that was chaotic and unstructured and lacked leadership … and I would step in to create the structure that I craved.

I am sure that there are allistic people who might feel the same and therefore take over and impose order, but I am confident that my absolute need for known expectations and order cash drive me to seek to create those things when missing.

I also believe in democracy, so when I start to “impose” order, I also create mechanisms for the team to govern itself – because, in all honesty, I don’t want that responsibility!

Neuro-divergence and kink

Chapter 7 also explores worlds where neuro-divergence is normal – worlds where autistics are accepted, are socialised, are embedded in the community, and are it’s leaders. Such places are advocacy organisations, nerdy role playing communities … and the world of BDSM and kink!

I wrote about this a little while ago here.

Chapter 8 – creating a neuro-diverse world

… social model of disability… disability is a political status, one that is created by the systems that surround is, not our minds and bodies.

Page 230

Society operates on a medical model of disability, which pathologises people, such as gay or deaf (ok, gay is no longer seen as an illness, but it was treated as such for a long time), which need to be treated rather than accepted or accommodate for. Deaf people are capable of creating a world where sign language is the norm and close-captions are everywhere; in such a world the “able bodied” are at a disadvantage.

The medical disability lens also completely misses those of us who aren’t a nuisance to the “normal” people, yet still struggle with key life skills.

There is a theory of forward in this book, and elsewhere, that neuro-divergents was much less of a problem in the pre-industrial age, and that it’s the increasing noise sand stimulation of the modern world that makes it so difficult for some neuro-divergents to thrive.

Price envisages a world where different neuro-types live on a level playing field. Sadly, I think such a world is a long way off – and possibly moving further away than ever.

Throughout the book, Price likeness autism to being gay: society assumes that one is straight and therefore we are both into the closet. Generally, we have to act straight until we have a coming out of some kind. Coming out gets to become an everyday occurrence because society assumes straight. However, gay is no longer (at least in my corner of the world) stigmatized (I encounter homophobia once or twice a year). Autism sal has a mental health stigma, sand masked autistics make decisions on whether coming out is safe or advantageous – an exhausting decision.

Universal healthcare and basic incomes

I never cease to be shocked at how insecure life is for my American friends, the lack of universal healthcare, social support, employment protections are – third world (a horrible phrase, I apologise for using it).

How fragile life must feel for those who are obviously and openly disabled in some way; how terrifying it must feel for those who carry a hidden disability burden.

I know so many autistic people for whom their diagnosis or self-realisation was a clarifying and affirming moment. After initial shock and shame passes, coming into a neuro-diverse identity can prompt you to reexamine your entire life, sand all your old values, allowing you to build something slower, more peaceful, and more beautiful.

Page 250

When I read “Untypical“, it was like the world suddenly made sense; it was “clarifying” and “affirming”, but for me it, whilst it was a shock, I wasn’t ashamed: I was overjoyed that I finally had some understanding of myself. I started to build a more peaceful world for myself, although not a boring world: peace through doing things that bring me peace, but also peace through finally being authentic.

Conclusion

In the transgender community we have a term fruit the fragile, confused are many of us inhabit before we recognise our gender identity and decide to come out: it’s called being in “egg mode”. An egg is a trans person who is either too isolated from the trans community or enveloped in denial to be able to acknowledge who they are. When you’re in egg mode, you feel ill at ease and out of place, without any clue why. You avoid considering certain painful desires you have inside you, because confronting them would shatter the fake cis-gender identity you built in order to survive.

Page 252

Like the author of the book, I have hidden both my gender identity and my autistic self. I have deflected attention away from those identities because to have any scrutiny could shatter the delicate illusion and bring my whole world collapsing down upon me.

I am shocked to read how the book’s author felt that she had to be self-sufficient, so that she would never need to ask for help. I have been the same, which denies those that love us from opportunities to show that love.

Masking also alienated me from everyone I loved. I never allowed myself to become vulnerable with anybody, to share my anger, frustration, dysphoria, it obsessive yearning that roiled inside me.

Page 253

My husband has seen anger and frustration. Anger sometimes directed at him, however generally these things “leaked” and I was unaware of the security breach. I never one showed my dysphoria. No wonder my husband was so bewildered when I came out as needing to be castrated.

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Devon Price ends her book with a candid telling of her cis- life and masked existence, the misery that it brought her, and her journey into the open – accepting and integrating all aspects of her identity.

This book is a call to arms as much was a tool for self-discovery.

I preferred the way that Untypical was written, it was more down to earth and relatable; however, Unmasking Autism worked on a different way, drawing different analogies that helped me understand more if the mechanisms that kept me imprisoned within myself through fear.

This is an inspirational book and it will take us proud place on my bookshelf next to Untypical.