J's AuDHD blog

A blog about autism and ADHD

Especially since becoming aware of my autistic traits, one of the things I’ve immediately sought out is others having the same experience.

Finding a couple of autistic and ADHD (AuDHD) groups on Reddit and Facebook, I wondered if there were any local meetups. I searched on Meetup.com and Google; I found meets for folks with ADHD, and folks with autism. Someone on Reddit helpfully shared a centre in London that offers support for both groups, individually.

But there wasn’t an AuDHD one I could find.

As has often been the case when I’m needing support for myself, I decided to post in 2 of the Reddit groups about hosting an AuDHD meetup in London.

I have to admit in recent weeks my social anxiety has been higher than normal, whilst I’ve not been very well and have mostly been spending time alone, indoors and outdoors.

The first meet went pretty well.

It was on a Saturday in Central London, so one of the challenges had been finding a central location that was also reasonably ND-friendly. I chose The Cut @ The Old Vic in London, somewhere I’d been before.

When I arrived it was pretty noisy in there; luckily, there were tables outside where it was much quieter.

There was someone who had arrived early, before I then arrived, and slowly people dripped through one by one. We ended up needing a second table; we rotated a couple of them to make one long table where we had more space.

As nervous as I’m sure everyone was, I think we all enjoyed chatting and sharing our experiences. It was very casual. Eventually it got quite cold outside, so we went indoors which was bearable but louder and more difficult to communicate.

We eventually called it a day after a good 3 hours. There was an awkward moment of goodbye’s, especially as we didn’t know if there’d be a follow-up, and I didn’t know if I had the energy to run a regular meetup and all that comes with being host. From choosing a location, picking a date, being prepared for no-shows/lateness, taking control and holding space on the day, etc.

Especially as, right now, I’ve been working on boundaries and not over-extending myself to meet the needs of others at my own expense. So there’s that.

But it felt good to be in an environment where I could be me and talk about shared experience, as well as actually learn more about autism and ADHD for myself.

At a follow-up meet I organised a month later, just 3 of us made it. I felt more relaxed with the smaller group, quiet location (midweek) that was near me, and with two individuals I’d met previously and had got along with.

We happened to be 3 guys, and we shared some deeply personal things with one another. I was struck by some of the similarities again, again, what I learned from each of them.

The same group of us met last week in a 3rd location, closer to one of the other guys and, again, the time flew and we could’ve stayed for longer.

I really believe in the power of these small sharing groups. I’d been part of one in the early days of my creative business; we met online for over a year and, despite me leaving, it’s still going over three years later.

I’ve found that groups of 3-4 work really well. And, again, I had formed that group from just putting myself “out there”.

Hosting your own AuDHD meet

  • Make a post in an AuDHD group you’re in
  • Set up a little chat group (eg. on Reddit, FB, email) to organise the 1st meet
  • Groups of 3-4 work really nicely; for more than 6, break up into small groups
  • After the first meet, take turns to organise (pick a date + location)
  • If in-person isn’t possible, online meetups can work too – but I’d highly recommend getting together in-person where possible

The last few weeks have been a blur.

After my AuDHD assessment, I’ve been trying to process what all of this means.

After the initial confusion of my semi-diagnosis (“you have traits in both, don’t meet the diagnostic threshold, but are neurodivergent and you’re welcome to say you’re autistic”), I’ve been trying to get my head around being AuDHD.

Or having AuDHD.

I’m still trying to understand the label and what all of this now means, without making AuDHD my complete identity.

Here are a few of the things I’m wrestling with currently:

– Who do I tell?

To date, I’ve shared my diagnosis – or at least the assessment report – with my inner family circle (mum, dad, brother). I’ve also told a couple of friends and my therapist.

A thread I started on Reddit about disclosing autism/AuDHD with family members was interesting.

Sharing with the closest people in your life can be difficult for all sorts of reasons.

I also shared the news with an auntie I’m close with. Within moments, a second auntie had rung to ask how I was for the first time in months and inviting me over. I wasn’t necessarily planning on telling her, but I sort of felt I had to because she knew already.

This is what happens in Asian families. People find out sh*t. There’s no sense of privacy. It leads me to withdraw and not want to share anything with anyone.

– Trying to find community

I’ve been spending time on a couple of AuDHD groups on Reddit; more than anything, I’ve been seeking relatability and lived experiences for other AuDHDers.

This is why I tested an AuDHD meet-up in London a few weeks ago, and have made a couple of friends with a couple of fellow AuDHD guys that way.

– Job search

My AuDHD diagnosis has helped shed light on why I’ve been so drawn to self-employment, as well as why this has been so difficult.

I’m been tentatively looking for another full-time job (tentatively because my confidence is low, the job market is tough, the search is overwhelming, and I still don’t really know what I want to do); I’ve taken a few months off now since getting unwell last year, and finding something temporary and low-pressure is increasingly seeming the best way to go here.

– Feeling smart, and stupid

I’ve always felt reasonably intelligent, and creative. Whatever those words mean.

At the moment I also feel incredibly stupid and incapable and I’m giving myself a hard time over it.

So much feels like a struggle. And so much of the past now makes sense.

Why I’ve been so disorganised.

Why I’ve been so sensitive to what people say and how they behave.

Why friendships and acquaintanceships have come and gone in the blink of an eye.

How one small thing can happen and I’ve then switched off from that relationship and wanted to close myself off from that person completely.

Why environments I’ve been in and worked from have gotten so claustrophobic so quickly.

Why group situations are so stressful with all of their dynamics.

Why in certain photos and videos I’ve seen of myself my expressions look... a little strange.

– On disability and support needs

Given my diagnosis, I’m recently sure I’m in the high-functioning autism category (formerly Asperger’s).

So high-functioning, apparently, that I didn’t even meet the threshold 🙄 I still feel like a bit of an imposter, tbh, though I’m pretty sure that I’ve just masked/hidden my autism very well, and the ADHD and autism have also helped cover/disguise one another.

I’m having a hard time accepting that I have what is considered a disability.

Different, not less.

– Being the first in your family to be assessed

Amongst my inner family circle, I’m the first to be assessed (even though I think all of us might have something ND-related).

In the wider family... who knows. Most people seem to keep themselves to themselves.

Some members of the family, have shared with me that they think so-and-so might have something.

Others have tried to offer supportive-but-infuriating words like “But we’re all just human, aren’t we? We’re all on a spectrum…”.

Argh.

Where to begin?

Back in 2022, I started noticing some ADHD traits. I shared it with a handful of people in some way (I ran a project for ADHD writers online at the time), and I kept getting a “me too” back from them. It was as if the Universe was trying to give me a sign.

One of the people I connected with, someone who I had met through online “creator” circles, confided in me that she had been diagnosed with autism. When I met up with her, she told me that she had been diagnosed with both ADHD and autism. At that point, I didn’t ever think I could be autistic. My sense of what autism was and how autistic people seemed, didn’t match with me.

I started reading and understanding ADHD. I wasn’t keen on the idea of going on medication, as I didn’t want to lose a sense of “me”, nor did I want my creativity to be affected as a writer.

I eventually mustered up the courage to tell my parents, on a video call whilst I was abroad. I was initially dismissed by one of them; we decided to go down the NHS route, and I had forms waiting for when I got back.

Only… I scored SO low on them. It just didn’t seem to be present in my childhood at all. Both parents filled out their sections and, again, I scored low. I felt embarrassed. As if they would think I was just looking for excuses.

I would later learn that ADHD needs to be present in childhood to be diagnosed, even if there is now a school-of-thought to say it can develop in adulthood. In any case, I didn’t want to be medicated, so I didn’t feel any follow-up was needed.

Later in 2022, I went abroad again. I was in Spain, living in 3 different places in the space of 10 weeks, for what was a particularly intense and chaotic trip. I went away again in the Spring of 2023 (a self-employed career, whilst not so financially-stable, gave me the opportunity to enjoy some stints of travel), this time house-sitting a place to myself having, apparently, outgrown living with strangers as I’d done in Spain.

I had space to myself; this time, though, it was a struggle to make friends and try to build the online business I was working on. Like in Spain, I seemed to struggle with boundaries; knowing which social invitations to say yes to, not succumbing to peer pressure (that trip was the last time I had alcohol), and struggling to put myself and my business “out there” whilst trying to stay blissfully anonymous in the small neighbourhood.

Burned out, I started writing about all of these travel experiences when I got back. A month spent doing an in-person course that Autumn and my autistic traits suddenly hit me in the face. I hadn’t ever thought I could be autistic.

So, this time, I had to muster up the courage to share with my parents that I now thought I had ADHD and autism.

I put myself down for an assessment (after cancelling another a few months before), even though no one seemed very keen on me taking it.

A few months before I’d bumped into someone from my gym on the local high street, and he shared with me that’d he’d been diagnosed with autism and ADHD the year previously, and that he, like me, seemed to resonate more with the female experience, than the “traditional” autism-in-boys stereotypes.

Finally, the date for my assessment arrived. The result wasn’t quite as I’d expected. I was told I had traits of both autism and ADHD, stronger on the autism side, though not meeting the threshold for an official diagnosis of either.

I was told I should consider myself and my phenotype “neurodivergent”, and my assessor went on to explain there were a growing group of people who seemed to have ND traits, though didn’t necessarily meet the threshold for any diagnosis.

Or, to quote my final report:

That was just over a month ago.

Now I’m trying to make sense of it all.

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