Don't Forget Your Autism (and ADHD!)

Or My Three Time Settings and Why it is so Hard to Leave the House

Sep 10, 2022

Yesterday, I went to meet Dr. Laura Hull, an academic I'm hoping to interview for my new book about being a person in the world, with a particular focus on the intersection between autism, drinking and family. Laura has co-authored a number of studies I’ve read about camouflage, gender, mental health and autism, and so I was thrilled when I discovered she now lives in Bristol, after being based in London at UCL (with Dr. Will Mandy, another name you will frequently see when learning about autism, gender and ‘masking’.)

Laura has also co-written a book, Autism and Masking: how and why people do it and the impact it can have with Dr. Felicity Sedgewick and Helen Ellis.

I was really excited to meet such an accomplished person. We decided we would have coffee and cake. Wonderful! How simple it sounds.

And yet, somehow, it was incredibly hard. Not the meeting itself - that was a sweet dream - but getting to the meeting. Yikes, I struggled.

It was that strangest of British weather when it is warm, but also wet. I have never learned how to dress for this. Maybe no one has.

Also, I have a bad (seemingly unbreakable) habit (disability?) of not leaving enough time to get ready. Scrap that. Not leaving any time to get ready.

As usual, I was working on a writing project, with a deadline. This one not self-imposed but external - I was submitting the first 10,000 words of my sci-fi(ish) novel to the Faber Imagined Futures Prize.

ADHDers talk about time blindness, which is the inability to sense the passing of time. For me, time has three settings.

1. I have all the time in the world o’clock

2. FUCK! it's almost SHIT I’M ABOUT TO BE LATE o’clock

3. SHIT! I’M ABOUT TO BE LATE o’clock

Our meeting was at two, and my plan had been to read up on Laura’s work, and my own work in order to talk intelligently about autism and camouflage, and make a new connection (as well as secure an interview for my book.)

But I was on time setting 1, I have all the time in the world o’clock, and so I didn't need to worry about any of that yet. Instead, I luxuriated in writing and having breakfast and admiring the puppy/kitten/cat.

I worked on my sci-fi submission and became entirely absorbed in the task. I deleted commas, and then re-added them, like the kind of pedantic obsessive tweaker one has to be to be a writer.

At some point a feeling of discomfort crept up on me. I was still in bed, and I had had breakfast, but not lunch, though I was incredibly hungry, and this sensation caused me to casually wonder what time it was.

In case it isn’t obvious, I had done not one thing to be ready for my meeting. And - oh no, reader. You guessed it. It was FUCK, it's almost SHIT I’M ABOUT TO BE LATE o’clock.

13:09. Something like that.

Cue getting dressed. But what to wear? Warm and wet weather… Hmmm. Warm = shorts? I pulled on a playsuit. And wet = raincoat? I found my poshest raincoat, and I was ready. I guessed. I mean, this felt like an odd outfit, but beggars can’t be choosers at this point.

And dear Christ, I had forgotten about hair. I have hair. A lot of it. And it was not in a good way.

You see, when I showered that morning, I hadn’t remembered I had a meeting, (though simultaneously, I have been looking forward to meeting Laura for a week - my brain doesn’t make any sense) and so I hadn’t washed my hair though it badly needed it. I believe this is an autism thing.

I fucking hate washing my hair. It takes so long, and it hurts to untangle the knots, and I end up with big lumps of it being pulled out, no matter how carefully I try to do it. So I put hair washing off. And I put it off. As long as possible.

This day, I put it off. Because I mistakenly believed I had no prior engagements. This is my normal state. For some reason, I cannot seem to get it into my head that I am not entirely free to do whatever I want ALL of the time.

It’s taken me 39 years to train myself to check my diary and calendar in the morning. And I still often forget.

So, now I find myself dressed and clean - hurray! But with greasy hair in the ‘up do’ I put it in to sleep.

Also, I’ve just remembered I don’t actually know what time the bus is. I hope it’s 13:26, but can’t be sure, so I need to check that. But it is approaching 13:19 and there is no time for such luxuries. I am now firmly in time setting 3.

That’s right, reader. It’s SHIT! I’M ABOUT TO BE LATE o’clock.

Cue adrenalin through the wazoo, and running from room to room to gather things and turn things off randomly and just generally panic.

Also to make things extra fun, I have a puppy, so I had to make him go weewee and then crate him. You see how it’s getting really exciting now? And I still haven’t sorted my hair!

A moment of inspiration strikes. If I pull strands from the bed-bun really carefully, it might look as though my hair has been expensively coiffured.

Maybe people will stop me in the street to ask how I achieved the look, and I will laugh and tell them: Oh I just didn’t wash my hair for days, and left it in a scraggly bun, and then took it down really carefully, and voila!

I hadn’t invented a life hack, and nobody would be stopping in the street to ask me about my hair. Nonetheless, I had to get out of the motherflipping house NOW.

I am by now gathering things without discernment: yellow rucksack, you’ll do. Phone? 100%. Laptop? Maybe I can work on my sci-fi novel, on the bus? NO, YOU MANIAC! Book? FOR THE LOVE OF GOD, JUST GET OUT OF THE HOUSE. Please!

I still haven’t had time to check the bus time, but we are in emergency mode now, and so I figure I just have to leave, and throw myself at the mercy of the bus gods.

As I sort puppy, put on shoes, and lock house, I think of a back-up plan in case I miss the bus.

You see, reader, there is another complication, which is that I just cancelled my current car insurance (it was valid until today) but haven’t yet managed to confirm the new one. Will I drive without insurance, if I miss the bus?

These life admin mishaps often collude with self-care and timetable mishaps to raise the stakes of simple tasks and give me intense stress feelings.

I walk-run the few minutes to the bus stop, sharing to my autDHD friend who understands en-route as a means of managing my by now insane levels of adrenalin.

But now, I am Out in the World, and so I have a different perspective. The playsuit I am wearing feels suddenly incredibly skimpy. Certainly not professional attire. And my trainers are not only not smart, but actually dirty. And don’t get me started on my ‘posh’ raincoat.

But I haven’t missed the bus. And I’m on target to be exactly on time, so long as nothing goes wrong.

At last, my brain is able to consider what it is we are doing.

We are meeting at Park Street, so just a ten-minute walk from the bus. I check my maps again to look at the cafe. Only the cafe has moved! Because Google Maps says it’s a 23-minute walk from the bus station. And I realise that yes, Bakesmiths is on Whiteladies Road, not Park Street.

I got the two big, busy hills in Clifton mixed up.

I send the apologetic, expectation-managing text.

I very rarely get anywhere without this step.

And now it’s time to manage my own emotions, mental health and self-esteem. On the upper deck of the X4 bus, I remind myself that I am meeting an academic who specialises in autism, because I am a recently diagnosed autistic person, and that it is okay that I have gotten mixed up and left the house looking, yet again, like a toddler whose just arrived at the stage of being allowed to dress herself.

Laura is kind and understanding in her text reply, and she tells me where she is sitting which is one less thing to worry about. I decide I will not do the meta-analysis of the moments leading up to our meeting, when I get to our meeting, and instead just enjoy the meeting.

But who am I kidding? I do the meta-analysis. I always do the meta-analysis.

Laura is warm and intelligent and open, and when she tells me about her upcoming wedding, I imagine that by then (next week) we have become such good friends, that I am in attendance. Maybe I'll even catch the bouquet!

Her hen-do is tomorrow, so even my overactive imagination can’t quite picture me there.

But we have a nice time. We bond over the difficulties of getting dressed. And the easiness of eating cake. And we talk about autism and ‘masking’ or camouflage, and how difficult it can be to identify exactly what it is, understand why we do it, and measure the impact it has.

As a result of this coffee date, I realise that I have never successfully masked as ‘neurotypical’. Arriving almost anywhere, I have to send an apology text because I am late or because I have gotten lost. In spite of my best efforts, I often have to cancel arrangements, either because I simply don’t have the energy to Do the Thing or because I have double - or even triple - booked myself.

Nobody knew I was autistic, but people have often called me ‘dizzy’ and ‘lazy’ and occasionally ‘selfish’ and ‘thoughtless’. I have frequently called myself much worse. I’ve also been called haphazard or frustrating or hectic or vapid or inept.

It made me think about this idea of ‘masking’, and how actually, it is really clear who is autistic or depressed or chronically ill or traumatised. And how, we really aren’t hidden at all. We are the ones wearing the wrong clothes and missing meetings and calling in sick and showing up late and having food on our tops/faces/shoes. We are the ones who didn’t remember the essential equipment or who neglected to prepare or who arrived at the right time, but on the wrong day. We are the ones who lost our keys. Or left our phones behind. Or have our jumpers on inside out.

We are the ones who aren’t able to bring all of the correct elements together at the correct time. We have some of them, and we hope that this will do. And we are very apologetic, and we are doing our best.

Messaging with my autDHD pal, it turned out that she had forgotten to pack any jumpers for her trip, except for the one that she hadn’t washed since she went camping last week. She hadn’t prepared her talk, though the purpose of the trip was for her to give a speech. And she had forgotten her toothbrush.

I know she will have wowed with her talk, anyway.

It made me think about how all of these things happen to all of us, some of the time. They are the usual small mishaps that are common in life. But for those of us who are autistic, dyslexic, dyspraxic, ADHD, depressed, disabled, these things happen more frequently. They happen in tandem.

All of them happen to some of us, all of the time.

And this is why I don’t like having things in the diary.

Going anywhere is a complicated procedure that I really do better without.

And yet, I’m glad I went. And in the end, it didn’t matter about my hair. Or my weird outfit. Or even that I was late.

And Laura agreed to be interviewed for my book.

So my goal was achieved.

And it was great to make contact and to drop the mask by admitting the ways in which I struggle. To have the improved self-knowledge to understand why the whole lead-up to the meeting was so chaotic and stressful.

I’m lucky to be in a position where I can experiment with being more authentic. I’ve published books and I have an academic post. I have a loving partner and a comfortable home, and my disability, compared to many people’s is a often just series of inconveniences. A comedy of errors. Every minute of every day.

On good days, I can laugh about it.

After doing this one thing, I had to go back to bed. I finished my Faber submission from the bed-desk (godspeed, little baby 🤞🤞🤞). I had no energy to cook, which is commonplace, but neither did my partner so we agreed to a frozen pizza with toppings added by me with some salad and his trademark homemade chips. I am so lucky to have him, and I love him so much (not just because he makes great chips, though it helps).

Today, I am still tired. I’m writing this in bed, because once I start writing I find it hard to stop and do anything else. Also, if I move, the puppy moves, and I just can’t handle that right now.

I still can’t believe how limited my energy is, but I am learning to live with it. I do what I can, and it’s a lot. It just usually isn’t making my hair look nice.

I’m working on taking my energy limitations seriously, but it’s hard.

Invisible disability stigma is real, and I often think I must just be realllly fuckin’ lazy and useless. Often, I feel hopeless, because if the ‘simple’ things in life are hard, and not getting any easier, then what does that make the hard things?

I remind myself that it was only very recently that I got a diagnosis. And that help may be coming. (Want to write LOL here.) I have an appointment about post-diagnostic support with Bristol Autism Spectrum Services this month (it was supposed to be last week, but I missed it due to the afore-described executive functioning/constant comedy of errors issues.)

I’ve been (not actually) working on a PIP application, though also feel undeserving. (I started it, at least. If you didn’t know, PIP isn’t means tested.)

This summer I had some support from Scope regarding work. I missed most of the appointments due to the issues detailed above, but I managed to make it to a couple, and they helped.

I remind myself I’m doing okay. I work on my self-talk and my compassion for others. I keep going.

I acknowledge my achievements, especially the ones that are quite far away from the kind of thing you receive acknowledgment for.

I managed to come off anti-depressants, which means I have less unwelcome side-effects (though of course it is fine to be on anti-depressants, and I reserve the right to return to them.)

Since I got a diagnosis, my suicidal ideation has decreased significantly. I’m not sure if this is an achievement, but it’s certainly a positive. Suicidal ideation and behaviour is very common in autistic women. Knowing that I struggle because of a neurological difference that is recognised by clinicians (even if it is also contested by clinicians) has helped me to understand myself and my life better, work towards making it more manageable, and thus dream far less often of the off-switch.

I am six years sober.

I’m grateful that people like Laura are digging into what masking is, why we do it, and what its impact is, and I look forward to reading more of her findings. Including her contribution to my upcoming book! Working title - Beautiful Hangover: hidden autism, sobering up and the arctic (thanks to Georgie Codd, for coming up with this subtitle).

And thanks to all of you who sent in praise for my work, too. My book proposal is taking shape! The vast majority of it has been written from my bed, and that is okay, because it has been written. And Cassandra from I Capture the Castle wrote her diary with her feet in the kitchen sink, so I’m in great company.

Feel free to share your comedies of errors, and the radical achievements you have managed in spite/because of them. <3

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