"If you’ve had to mask for a long time you might not be sure what is you and what is masking."
Interview with John Pendal, Autistic life coach (and ex-International Mr Leather)
Since I found out I am Autistic, I have been on the lookout for where to meet other Autistic people. I crave the understanding of other neurodivergent people, as it is so wonderful and relaxing not to have to explain so much. Not to have to perform so much. This is how I met John Pendal, through a Zoom meet-up held by Thriving Autistic, a coaching and therapy organization made up of Autistic people for Autistic people.
As a self-declared anti-social person, historically I never much liked groups. BUT getting sober using AA taught me to respect and adore the power and healing potential of community. So these days I love support groups, especially when they have a clear structure (12 step meetings are THE BEST for this). No more horrible, confusing improvising - hurray! Well, a lot less anyway.
Thriving Autistic have more upcoming meet-ups and they are hiring, if anyone is looking for a new role. : D
Okay, so onto the interview…
Hi John! Thank you so much for agreeing to be interviewed. Please could you introduce yourself?
Hi, my name is John. I live by the sea in the south of England with my husband and two cats. During lockdown the cats have lost all sense of routine and house rules as they are staying home with us – so last night playtime was 3am and breakfast at 5. I’m pretty tired!
Could you tell us your diagnosis story?
I was in a relationship for 17 years and towards the end, we saw a couples’ counselor who said that all they ever did was split couples up, because by the time people go to see them it’s already too late.
When I met my husband I suggested we go for couples’ counseling early on, so that we could see someone before we thought we needed to. It turned out to be a great idea and we’re still seeing the person we found. (In public we call her ‘Abigail’ – not her real name.)
She was the first person who suggested I take some tests online to see if I was autistic. I scored highly, but because I'd been masking my whole life I still had very ableist thinking. I described myself as a ‘little bit autistic’ or ‘above average on the spectrum’ until recently.
As part of my training for Thriving Autistic I learned that being autistic is not a static linear spectrum, it’s a set of factors that fluctuate over time. I call it ‘everything is fine until it isn’t!’ I’ve realized I’m not ‘a little bit autistic’, I am completely autistic and that’s brilliant.
I asked Thriving Autistic if I needed a professional diagnosis and they said, “did you need a doctor to tell you that you were gay?”
…No.
“So why do you need a doctor to tell you you’re autistic?”
Good point! I should have saved myself £700! But my work wouldn’t consider reasonable adjustments without diagnosis. Plus I didn’t think people would take me seriously, unfortunately. I love that Thriving Autistic don’t require that ‘Official’ element.
Do you have any special interests? And what role do they play in your life?
I’ve had various special interests throughout my life. When computers first came out in the 1980s I was obsessed with computer programming. In my 30s, I loved learning how to escape from all kinds of restraints and became good enough to be booked at events. In my 40s, I was a stand-up comedian and took solo shows around the world (my last show Monster is on YouTube with an 18+ age restriction). Now I’m almost 50 I’ve retrained as a life coach and love helping people online.
This really resonates with me as I have had so many different jobs. I became a gardener for a year, and seriously considered retraining as a librarian before I got a permanent job in academia. It was hard to fit into the world of work as the social aspect has always been so draining. Which, finally, I understand! Still, there is a lot of processing to do, now I know that I am Autistic.
Speaking of which, what is the best advice you can give someone who has just received a late diagnosis of Autism? Someone who suspects they are autistic?
First of all, relax. You’re doing great. Just breathe for a bit. Your tribe is out there. If you want to try learning a bit more try looking for the hashtag #actuallyautistic online.
Unfortunately, there are still a lot of people (even some autism organizations!) who believe autism is a problem to be corrected or a negative diagnosis. By looking for information from #actuallyautistic people you can hopefully avoid some of the harmful thinking out there.
Very important. With that in mind, do you have any suggestions for healing from the trauma of the past and how to set healthy boundaries?
That really resonates with me. Anyone autistic has probably had trauma from being told to fit in, and that can lead to a lot of apologies for being who you are, people-pleasing, and not knowing your own voice.
A useful exercise someone told me was each week to practice saying ‘yes’ to one thing that’s just for you and ‘no’ to one thing you don’t want to do. It doesn’t matter how big or small the things are. It might be ‘yes’ to something that reduces your anxiety but you were always told off for doing – or ‘no’ to going somewhere where you’ll have to mask to fit in. It’s up to you what they are, but I’ve seen clients grow and find their voice using this method.
How about any workarounds you have found for making relationships work?
For me it was finding Abigail!! Each session it feels like we lift the lid on my head, so my husband can understand how I think and I can be understood by others.
And do you have any advice or tips about unmasking?
This can be tricky because if you’ve had to mask for a long time you might not be sure what is you and what is masking. I’ve noticed when I’m in a space where I don’t have to mask, for example with other autistic people, my instinct is to apologize a lot for being myself.
Try to develop an awareness of which social situations tire you out the most. The more tired you are afterwards, the more likely you were to have been masking.
I looked through my list of friends and acquaintances to see which ones required effort to be with, and who felt effortless. The second group have become very precious to me and I’ve tried to make them my closest friends.
Oh, I so relate to that! I have to be surrounded by extremely patient, extremely kind people or I really struggle not to shrink inside myself.
Before you go, is there anything else you want to share with us?
I love hearing from like-minded people. If you’d like to get in touch check out my coaching website. I also work with Thriving Autistic and I have a YouTube channel.
Thanks, John!
Have a great day everyone. Thank you.
Challenging read
Trigger warning: this article by Orwell prize-winning journalist Ian Birrell discusses the horrific abuse, mistreatment and lack of rights experienced by Autistic adults with learning disabilities and mental health issues: Dannielle has spent half of her life being subjected to state-sanctioned abuse. Why? Because she has autism.
Inspiring read
But in more positive news… Late-diagnosed autistic women were in the media a lot this week. Well, one was. My writer pal, author of the hugely popular and multi-prize winning Geek Girl series, Holly Smale was in The Times, The Sun and on TV too, talking about how it felt to find out she is Autistic.
“Watching other children, I marveled at how easy they seemed to find being human, which was a minute-by-minute effort for me,“ she writes, in the Sun, and yet again I thrill with recognition.
Watch
Thanks for reading, and let me know if you have read anything I should share <3
Chelsey x
This was a great read, following #actuallyautistic now :)
I'm not autistic. (Though I wonder if each of us in some tiny measure might be.) So this newsletter and this particular post are really illuminating and helpful.