In The Subtle Spectrum I wrote about two people’s reactions to my telling them I am autistic, the close friend who instantly denounced it: “No you’re not, who told you that?” and the acquaintance who replied with a heartfelt: “Goodness, you must be exhausted from masking so well.”
The first response was like a cold wall coming down between us, the second was like a warm sun rising. I felt seen.
I thought about her words. I didn’t feel particularly like someone who was masking. I did feel exhausted. Like all of us diagnosed in adulthood I was on a journey of understanding. Being diagnosed is a useful piece of self knowledge but it is by no means the whole story.
Recently I find myself at odd moments in the day, and before I fall asleep at night, thinking back to the room in which that diagnosis took place. In a small quiet way I long for that room, and my frequent visits to it in my memory are my way of returning.
I had gone to my GP saying I thought I might be autistic. Having completed various check list assessments and stumbled through some awkward in person questions he referred me on to the psychologist whose room I am remembering.
Walking in was like stepping out of life.
I was greeted with my name and a welcome, no small talk questions.
The room was gently lit and the windows let in a breeze. She asked if I would like any adjustments making, to the lighting, to the temperature. I shook my head, the room was, remarkably, already gentle.
She glanced around clearly doing a quick audit herself of how suitable the landscape of her workplace was for a potentially neurodivergent adult. “I’ll switch that off.” She had spotted an empty plug socket with the switch left on. I smiled. I hadn’t spotted it, but had I my desire would have been to switch the switch off. Not because I fear electricity leaking out into the environment or worry for small fingers, but because the switch remaining on indicates a task unfinished to me. What ever had been plugged in there, probably a hoover for the floor was very clean, it’s job had been completed, it had been packed away, unplugged from the wall and….. and whoever it was that did those things hadn’t completed the task by switching off the plug socket.
Think of yourself completing a task, cleaning the kitchen for example, you stack the dishes away, wipe everything down and there comes a moment when the task is complete, that “Ahh” moment when your shoulders relax and you let out a deep breath. It is done. With that plug socket on I am still holding that breath in, my muscles are still loaded with the activity of the task to which it’s on-ness belonged.
The room was uncluttered, its décor was muted and warm. There was a desk, a coffee table and some chairs with scooped backs. She indicated that we would sit on the chairs. I sat down, she drew a chair up. Positioning it not opposite me, but adjacent, so that we each faced a similar point in the room, but not each other. I felt her to be a companion, someone with me, looking at the same things as me. Had she positioned her chair opposite me I would have felt scrutinised, under attack, defensive.
I took my shoes and socks off, pushing them under my chair and curled my feet beneath me on the seat. Not only did she not start at my doing this, not flinch, it clearly did not even cross her mind to do so. It was entirely un-noteworthy.
In her room, I was allowed to be just as I am.
We talked for a couple of hours. I went back a week or so later to talk for a few more hours. And then I was autistic – officially.
Stepping out of that room it hit me, like the heat and humidity of a holiday destination hits you as you step off a plane. Out here I had to mask again.
I hadn’t realised how much masking I did, almost without thinking, until I spent two hours in a room where I did not have to do any. It is no wonder that when I am tired I long for that room again.
Joanna Grace’s Bio:
Joanna Grace is a sensory engagement and inclusion specialist whose work focuses on people with profound and multiple learning disabilities. She is an author, a trainer, and the Founder of The Sensory Projects. In 2019 her son became the UK’s youngest published author with his book My Mummy is Autistic. Joanna first considered that she might be autistic aged 11 after reading something in a magazine, but was eventually identified aged 36. Her book The Subtle Spectrum charts the post diagnosis landscape for adult identified autistics. Joanna is about to undertake a PhD exploring identity and belonging. Joanna grew up on a boat and now lives in rural Cornwall close to the sea that she loves, but can often be found on trains carting boxes of interesting sensory items around the country to various training events.
Joanna is active on social media and welcomes new connections Twitter, LinkedIn, Facebook
This was SO beautiful. Thank you! As the parent of an adult who has autism and as a special education assistant having worked for 17 years with teens diagnosed with autism in a high school setting, this writing strongly resonated with me. I’ve always observed that there is little accommodation for people with autism in our world, especially in the school system. Our government espouses ‘inclusion’ but doesn’t really deliver it. Without accommodating their sensory and social/emotional needs, it’s more like a recipe for pain for people on the spectrum. Glad to hear from someone who lives this autism experience.