One of the reasons I stopped talking to a family member about my neurodivergence was that she began saying things like, “But of course you would see that about yourself, because you’re reading about it so much.”
Her comment suggested that I was ‘imagining’ I had certain traits because I was immersing myself in relevant research. A bit like the ‘Medical Student Syndrome’, where medical students begin to suspect they have every disease under the sun because their studies focus them in that direction.
It was an invalidating comment and it shut me down. More than that, it made me doubt my practice of connecting with other autistics and ADHD-ers online and learning more about neurodiversity.
Yet, the first 20 or so articles I read from neurodivergent authors gave me such a powerful feeling of relief, validation and Finally - My Tribe.
There is nothing like the impact of reading or hearing what your inner experience has been all along — an experience you have, until now, felt totally alone in.
If I had listened to this family member, this would have not only been isolating but it would also have set me right back to where I was in 2021, when I went into denial about my neural wiring and tried to function like a neurotypical again — with more burnout as a result.
Lately, however, I have wondered if there is a kernel of truth to her comment.
Starting the Diagnosis Process
The timing of this is ironic, because I have just begun the very lengthy process of ADHD/Autism assessment. There is a 3–4 year waiting time in the UK — and I’m in Wales, where the queue-shortening ‘Right to Choose’ scheme doesn’t exist as it does in England.
Two days ago, I sat face to face with a doctor I had never met before and told her about my lifelong struggles. Even though that was a good day and I felt resourced, with reasonable executive function, I presented my ‘worst day’ scenarios, knowing that if I didn’t, I would be denied a referral for an assessment.
It was agonising to watch her put what felt like a ‘sympathy face’ on and start asking me if I was managing to eat day to day and if I had anyone supporting me. I felt patronised. I’ve got a 1st class degree, I wanted to scream, and No, you just don’t understand.
I don’t like the terms ‘high-functioning’ and ‘low-functioning’ for autism, and like many autistic advocates and writers, I know they obscure a lot. The term ‘high vs low support needs’ makes more sense.
My needs for concrete support from others are fairly low most of the time. But my need for accommodations is still high.
I need massive amounts of time alone, sleep, silence, and time between and around activities involving socialising and work. If I don’t, my functioning deteriorates rapidly and I have to spend ages recovering. There is no way I could cope with a full-time face-to-face job. I’ve created a life where the demands on me are as low as possible, living with very low rent in a tiny caravan and eating simply.
In my online work, I need accommodations around written rather than verbal instructions and require very particular, direct types of communication. I get ‘Zoom fatigue’ very easily which manifests as a headache, brain fog and exhaustion.
These were the realities I found hard to get across at the appointment, even though I felt I was repeating myself.
But the doctor was kind, which I appreciated, because I know plenty of neurodivergent people have faced outright dismissive responses from GP’s.
After the appointment, I noticed that my earlier good mood had evaporated. I felt disempowered and my self-esteem had plummeted. I knew this was probably because I had been focusing on what I find difficult, rather than my strengths. It was as if I had to put a framework of ‘Victim’ around my experiences to gain access to medical help.
I wondered for the hundredth time whether pursuing an official diagnosis was helpful or would just box me in. Once those words were on my medical records, would I be forever limited by them?
Decreased Tolerance
The main thing that’s made me wonder whether focusing on my traits makes them worse is that since discovering that I am autistic, my tolerance for sensory overstimulation, social situations and general ‘busy-ness’ has drastically decreased.
Since recognising my ADHD fully (having forgotten all about a childhood diagnosis of ADD that was never followed up), I became more aware than ever of the way I jump from one thing to another and can’t get my mind to stop.
This is something I often hear neurodivergent people speak about. We question whether we are ‘exaggerating’ our difficulties or whether we are, in fact, just noticing them more because of our newfound awareness.
My newly heightened sense of where my limits truly are can serve me well in knowing when to stop, draw a line, and retreat into self-care. It can also leave me feeling frustrated at being unable to fully participate in so much that I used to just barrel through.
I often feel a sense of being left behind and left out of everyday life. When I do choose to ‘do the thing anyway’, I suffer the consequences of overwhelm and fatigue with full consciousness of what is happening and how I could have prevented it.
Journeying into Self-Acceptance
I feel that now I am coming to a place of more balance.
I am reading a little less. Writing a bit more. Exploring my own unique experience of this neurodivergent thing, in the context of all that I am. I am in a process of grieving the things that I thought I could change if I just ‘did enough healing work’.
Yesterday, when I went to a new social gathering, I was achingly aware of my oddities. The way I move and stand differently, watching my speech to make sure I didn’t run off on a tangent about a special interest for ages, toning down my enthusiasm and trying not to look ‘too keen’ to make new friends.
Before my self-realisation as an autist and ADHD-er, I would have just bumbled through this occasion and then mercilessly criticised myself afterwards. Now, I know what to watch out for and how to take care of myself in this situation. It’s a new way of being with myself while being with others.
And yet there’s a sadness, too — that I now know I am not like the others, rather than just suspecting it.
This experience was both enjoyable and tiring, but I just gave myself the grace of a nap when I got home and went on with my day.
I don’t want to limit myself by pre-screening out much of life’s experience in case I can’t handle it.
I want to gently test those edges and be compassionate with myself when I reach them.
Whatever happens with the diagnosis process, which took courage to finally undertake, I will know myself better than I ever have.
If you are autistic or have ADHD, I would love to hear from you — what has been the impact of your self-diagnosis or diagnosis on how you feel and think about yourself?
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