The moment I started to wonder
On 25th September 2023 – aged 42 – I was idly scrolling through facebook and I saw an article someone had posted in an Highly Sensitive Person group I was in. The post said they were fed up of these articles popping up by people who had thought they were HSP and later received an autism diagnosis. Intrigued, I clicked through to the article and read about a women’s experience of being diagnosed as autistic as an adult.
I don’t know how to describe the feeing, except to say that my whole body went “oh!”. I felt a deep sense of knowing that this applied to me somehow.
A new understanding of my healing journey
I had just come home from an intensive week away with my cohort as part of my coach certification with One of Many®. One of the things we’d talked about was the “backpack of emotions” that everyone carries with them: all the unpacked emotions we’ve repressed (involuntarily) or suppressed (purposefully) because we weren’t able to deal with them at the time.
I know that my backpack was huge a few years ago and most of my healing work to date had been focused on unpacking it. We discussed how it takes a great deal of energy to hold onto all those emotions, and I remember saying joyfully that I’d realised during the week that my backpack was now relatively light. I left the intensive on a real high – belting out “Show Yourself” to myself in the car on the way home.
I realise now that I had been telling myself a story of how, after I freed up all the energy I was using to hold down all that old emotion outside of conscious awareness, I was going to magically transform into someone who was no longer so socially awkward and who was full of energy – no longer becoming overwhelmed and depleted so easily.
When I read that article I realised that despite all the healing work I’d done. I *still* couldn’t remember what I was supposed to say to people when chatting over dinner. I *still* needed to manage myself very carefully by taking myself for a solo walk during the day at the intensive, and avoiding interaction in the evenings to give my brain a chance to catch up. Maybe there’s something else going on here?
Intense research phase
That sent me into a bit of a tailspin. I didn’t know much about autism – cue an intense period of research that hasn’t really tailed off four months later. In that time I’ve read books, listened to podcasts, joined facebook groups, and binge-watched TV series either about autism or featuring autistic characters.
I also found myself an autism-informed therapist. I’m privileged to be able to access some sessions through my husband’s work. She sent me some screening tests which came back as “consistent with a diagnosis of autism”. I also scored highly on a test designed to assess levels of “camouflaging autistic traits” – commonly known as masking. She also helped my navigate the NHS Right to Choose system and as a result I’m on the waiting list for an assessment.
What is Autism?
From my research I’ve learned that (need to fact check and link these):
- Autism being a spectrum condition doesn’t mean that everyone has autistic traits to a certain degree – rather it means there are a number of different traits that could indicate autism. Autistic people are likely to have a “spiky profile”, having some of those traits very strongly, and others not showing up at all
- Hence the saying “if you’ve met one autistic person, you’ve met one autistic person”
- Diagnosis using a deficit model, so if no support was needed, no diagnosis would be given
- Most research has been done on white boys, so the diagnostic criteria is skewed to how autism presents in boys.
- Autism often presents differently in girls, women, and people from ethnic minority backgrounds. Which can lead to difficulty getting a diagnosis
- At the moment diagnosis is very behaviour-focused, so if you show a certain collection of behaviours, you’ll get the diagnosis. Autism as defined in the DSM-5 does not look at the cause of those behaviours – except to say that they should be persistent over time
- Recent research has shown that autistic brains show up differently in scans, suggesting there are physical brain differences that account for the diagnostic behaviours seen
- Some people believe that the diagnostic criteria describe an autistic person in distress, such that a person with an autistic brain who is not in distress may not be diagnosed
Seeing myself through a new lens
Regardless of whether my assessment results in a diagnosis, thinking about myself through the lens of autistic traits has been hugely helpful in two ways:
1. Making sense of my past
I’ve seen this process described by many people who have been diagnosed with autism later in life, and it’s certainly true for me. My brain kept throwing up new memories and filtering them through an autism lens.
Is that why:
- I spent so much time observing the guy in the year above who didn’t talk much, to figure out exactly how much time a person could stay silent for whilst still appearing “normal”?
- The girl I was playing with at my dad’s social group that evening said she thought I was mute when I finally spoke?
- I crumbled so completely when I tried to work 12 hour days at a mail packing plant during University?
- I spent my teens and 20s pretty much wishing I was anyone else but me. Constantly wondering what was wrong with me that I couldn’t keep up with the social life everyone else seemed to find so easy and enjoyable?
- I felt anxious pretty much constantly through my teens and 20s? Was it actually sensory overwhelm?
- I was diagnosed with depression after my brother died, even though I didn’t resonate with other people’s accounts of what it’s like to live with depression?
- I didn’t learn how to recognise my emotions until I was in my 40s, unless they hit me over the head with a sledge-hammer?
- I felt so awkward when a friend at Uni pushed me to tell a story one evening, and when I finally gave in and tried he said “yeah, you really are terrible at telling stories”?
- I find it so hard to not tell the truth, even when there’s no need to say anything and it causes problems?
- I get such a bee in my bonnet about things that I absolutely have to do or say them right then and there or I feel like I might explode. Even when the timing is horribly inconvenient?
- My mind always goes blank when I’m supposed to be making small talk?
- I spent so many hours cataloguing my music in iTunes – making sure everything was formatted in the same way and all the album artwork was there?
- I never thrived in the corporate world, even when I found my way into a role with relatively short hours and plenty of independence?
- When I discovered an interest in the environment and conservation I dived into it so thoroughly that I took a 15 month career break to work in conservation, did an MSc and sought to make it my career?
- I was always so quiet sitting round the dinner table with my family?
- I spent so many hours folding paper after I was given an origami book for my 8th birthday?
- I’ve learnt to strictly limit the number of TV shows I’ll let myself start watching, because I know I’ll get so into them that I won’t want to do anything else?
2. Seeing current behaviour patterns in a new light
Noticing patterns of behaviour happening in real time through an autism lens has helped me enormously.
Trouble with my voice
For my 43rd birthday I had a fabulous weekend. I took my daughter to a swimming class for the first time on Saturday morning. Then went to a comedy show with my husband and a friend on the Saturday night, and then went out again on Sunday for lunch and the theatre with my husband. A rare two outings into London, and big chunks of childfree time as my lovely mother-in-law babysat.
But it all went wrong on the way home. I didn’t realise I was overloaded until I said something to my husband on the train ride home, but it came out so quietly he couldn’t hear me. when he replied “what?” I tried to repeat myself louder, but without meaning to my voice came out really aggressive.
Understandably, my husband didn’t respond well to that, and we had an argument that ended in me having a massive meltdown.
That incident triggered a cascade of memories where people couldn’t hear what I was saying, so I pushed myself to say it louder, and my voice came out super angry.
Now I’m more aware of it, I can find other ways to communicate when my voice starts getting so quiet. And I can take it as a sign I need to rest.
Stimming
I had no idea how much I was stimming until I started paying attention. Often in hidden ways that no one else would notice:
- tapping my fingers together in the same pattern I’ve done since a child
- clenching my jaw
- rubbing my feet together in bed
- wiggling my toes
- having a big flap of my arms the second I get somewhere private in a busy area – in a toilet cubicle or changing room
- jumping or bouncing and clapping when I’m excited
I’m experimenting with letting myself stim a little more freely now that I’m aware of it
I’m still early on this journey, and I’m looking forward to learn even more about myself over time.