To be or not be assessed for Autism? That is the question.
The systemic ableism that follows Autism, burn-out and accepting Autism.
Last newsletter, I shared that I had received a medical ADHD diagnosis. This week, I’m here to tell you I’ll be assessed for Autism in just over a week.
The run-up experience, from an emotional standpoint, is wildly different.
With my ADHD assessment, I lived in excited anticipation as I counted down the days. It was, after all, a step closer to understanding who I am and why I have always struggled.
With this ASD assessment, I’m feeling apprehensive. I’m not worried they won’t diagnose me. Instead my apprehension sits with:
the fear of systemic ableism that will follow me once the diagnosis is documented
accepting that I am autistic
the burn out that will surely follow the assessment
Fear of the systemic ableism that will follow me once the diagnosis is documented
I’ve been grappling with whether gaining a medical diagnosis is right for me. When I set out on this path, I wanted a medical diagnosis to confirm, for sure, if I was autistic or not. Having read, re-read and read again anything and everything I can on how autism presents in women, I’m certain. I am autistic.
I am coming face to face with how demonised autism is, how little it is valued, and how easily it is marginalised. In Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That Dr. Devon Price, an autistic academic and author of Unmasking Autism (an incredible read), writes of all the ways medically diagnosed Autistic people lose their rights and autonomy:
Some countries won’t allow Autistic people to immigrate
Do Not Resuscitate orders placed on Autistic people
Forced guardianships and conservatorships resulting in loss of control over key elements of a person’s life - housing, finances, medical consent
Gender-affirming surgeries and medication denied to those medically diagnosed Autistic
Institutionalisation
Loss of custody of children
Treated less competent By Doctors, School Officials, & Employers
Denied life-saving treatments such as organ transplants
And, just the other day, I attended a peer support group for Autistic people where someone mentioned their life insurance premium went up significantly after they were medically diagnosed.
Although not all points on this list apply to me, it’s enough to make me re-think obtaining medical diagnosis and question who am I doing this for? Am I still doing this for me or am I doing this to prove to others who I am?
I can count the number of days until my assessment on my hands, a stark reminder that my time to decide to go ahead or not is trickling away. It’s a pretty laughable scenario, considering me of 3 or 4 months ago was chomping at the bit to get an assessment.
Post-assessment burnout and accepting Autism
I felt 100% comfortable and accepting about having ADHD. Considering this, post-diagnosis burnout hit me entirely by surprise. It took nearly a month to start recovering and in that time there was much I left unattended - which is why this newsletter has been significantly silent. Conversely, I am days from my Autism assessment date and I’m still processing what it means to be Autistic and all the ways it has shaped my experiences. I’m guessing hearing an autism diagnosis confirmed will be a lot to take in, and even harder to process if there is no follow-up support. I’m not ready for it.
Throughout life, we are taught that being disabled is world-ending and we rush to find remedies whenever we get sick or injured. We’re constantly told our worth comes from our productivity and our health… from our ability to do. We absorb so many messages, capitalisms ableist mantras, that say if we work on ourselves enough we can be mentally well or, failing that, if we take a pill we will feel better.
ADHD, having the ability to be medicated, fits snuggling into the ‘you are fixable’ tropes - in my mind at least. Medication can, for some, create a more typical regulation of dopamine, transcending ADHD into something that can be controlled, even if only partially, and with control comes a sense of ‘correction’.
Autism has no medication. Therapies can help create new coping strategies, but nothing can really change how an autistic mind works. Nothing can make it more neurotypical or, in capitalist speak, ‘correct’. The first time I recognised I would always be Autistic, no matter how much I tried to change myself, I wept and drowned beneath the weight of all I had believed. Having spent more than half my life, from the age of 12, chasing self-help, therapy, medication, self-care, well-being… to realise none of it was ever going to ‘fix me’, but also that failing to change or ‘get better’ wasn’t my fault either was the uncovering that my whole life was a lie. These messages I had absorbed were a lie. I understood for the first time why all the work I did to try and change myself didn’t work. Why the CBT… didn’t work. Why the depression and anxiety tablets… didn’t work. Why meditating my way out of anxiety didn’t fucking work like my therapist promised and why, whenever my partner tried to put on a guided meditation, I wanted to scream, throw my phone across the room and cry until I was so exhausted I had no room for thought.
I’ve been through a cycle of grief, rage, fear and hurt coming to terms with how disabled I am, and how disabled I’ve always been. I’m standing on the precipice of the idea of not being ‘fixable’ and understanding Autism as a difference that needs no fixing. At times, I fall off the edge into the capitalist abyss that says I need to change and be fixed in order to fit into this world. And by fit into this world, I mainly mean… stay employed.
I grapple daily to unpicking the messages I’ve swallowed, and firmly root my thoughts in the idea that it’s the world that’s sick. Not me. I am still trying to understand and accept that I have to live slower and be less productive, I have to do things differently to avoid shutdowns and burnout, I have to adapt and accommodate autism now that I am aware of it.
There is no getting better from autism, because it is not a sickness. There is no fixing autism, because it doesn’t need fixing. It’s a difference and no matter what I do, I’ll always be different. I’ll always be autistic and I wish the world understood that.
The world is hard for Autistic people. My life felt hard in the past, and it feels hard now. But, I cling to hope that it will get easier. As more people are diagnosed, I hope we can make way for the joy of autism acceptance and eradicate the ableism that makes medical diagnosis scary. I have always been disabled because of the world I was born into, but perhaps when I am old I will live in a world that is less disabling, less hard and more soft. Should I go through with my assessment next week, this is the thought I will hold in my heart to carry me through.
This section, at the bottom of every newsletter, is a space to share and celebrate joyful moments from the week. I’d love to revel in your joy too, so share any joy you've recently experienced in the comments. For now, here’s mine.
The seasons are on the turn. My garden is pack with daffodils that are in full bloom, accompanied by tulips that are just budding. The days are warming up and my seedlings are stretching out on my window sills. We’re all itching for warm days so we can be outside.
Wild garlic has been in it’s prime the last few weeks and I took a decent harvest from a nearby wood. It’s been a staple in pasta sauces the past few weeks and I even made some wild garlic scones. There’s nothing more delicious and delectable that living with the seasons and savouring the treats offered within a short period, rather than extending them year round until they become banality. It’ll be turning over to flower soon, but if you’re quick you can still find some leaves that can be eaten.
Over to you.
Chelsea🐌