3 Reasons Why I Paid $700 For A Private Diagnosis Of Autism
#1. Increased self-compassion for all the mistakes.
Prostock-studio / Shutterstock In March 2020 I was signed off work because of stress. I’d been in a new role for 6 months and I was totally burnt out. I needed a break. Maybe forever.
A good friend with whom I’d been sharing my work/life struggles introduced me to a Special Educational Needs teacher pal of hers. This woman allowed me to email her with what was overwhelming me on the off chance that she could help.
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After reading my desperate and personal email, she wrote:
“After reading your email a couple of times I want to make a suggestion which I am partly reluctant to do as I have not met you. But have you considered autism especially at the ‘high functioning' level of Asperger’s syndrome?"
Autism in females presents as very different to autism in males where you see social/communication impairment, lack of eye contact, the rigidity of thought, e.g. compulsive hobbies such as trains and car engines.“
I was shocked. I had never for a moment considered Autism.
As I read her email, I tried to keep an open mind. She pointed out that much of what I was finding difficult pointed to issues with executive functioning.
She sent me resources to read about how Autism presents in women without co-morbid learning disabilities and I had the strange experience of seeing myself in a place I’d never expected. Could I really be autistic?
I took the Autism Spectrum Quotient Test, which I passed with flying colors in spite of it clearly being created for the male autistic she mentioned. Feeling inspired, I called the GP to make an appointment.
This was discouraging because while I was entitled to a free assessment on the NHS, the waiting list was around two years long. Also, the GP seemed as clueless about the female phenotype as I had been until days previous.
“And do you have restricted interests? Repetitive movements?” he asked, slightly dubiously.
I’m impatient and I have a decent salary (for the first time in my life) so I started to research private diagnoses. By now, I was obsessed.
For years I have wondered what is ‘wrong' with me. I excel in a few areas (writing, mostly) but am sadly below par in many others: timekeeping, scheduling, cooking, housekeeping, everyday life.
After some research, I found an organization called AdultAutism.ie who specialized in recognizing autism in adults, and — significantly — in women.
It cost 850 Euros (£730) but I was able to pay in installments (minimum per month is £100). Diagnosis entailed three interviews of an hour to ninety minutes with a psychiatrist. My mum also filled out a form, answering a number of questions about how I was as a child, and I wrote a letter outlining the main evidence I had gathered too.
In November 2020, the kind SEN teacher reluctantly and cautiously mentioned autism to me. In December I received confirmation I am autistic.
And not only a little autistic, but scoring highly in all relevant areas.
“If Asperger’s were still in use, we would have been talking about that,” the psychiatrist said.
(Asperger’s was the diagnosis given when a person has an average or above-average IQ, but it is no longer in use — something that not everyone is happy about.)
So what difference has getting a diagnosis made? Was it worth the time, effort, and money?
Here are the reasons why I’m glad I bothered getting a private diagnosis of autism:
1. Increased self-compassion for all the mistakes
Life with executive functioning issues is difficult. I make a lot of mistakes. I forget to leave the keys out for the builder/cat-sitter/house guest. I say Weds when I mean Tues. I double book even when it’s important. More than once, I have driven off without friends.
Since my diagnosis, I don’t get so angry with myself when these mishaps occur. I understand what my issue is and give myself a break. Processes with multiple steps (basically, everything) are difficult for me. I can’t think well if I’m put on the spot. Scheduling is physically painful.
Now I know I’m autistic I no longer beat myself up when I struggle to work out in which order to do things or forget where I put my keys.
I have more acceptance around the fact that cooking is stressful and messy, and not something I really enjoy, in spite of how much pleasure other people seem to take in it.
I no longer feel such a failure for being so very far from a domestic goddess. I’m working towards focusing more on the things I’m good at, and it’s a huge relief.
After years (decades) of self-loathing and shame about my inadequacies, self-compassion is incredibly welcome. This alone has made the diagnosis worth it for me.
2. I am working towards creating a better future
I’m not sure my job suits me. It’s a great job, and I love it, but teaching entails having dozens of eyeballs on you, and that makes my body hurt.
Also, I have to stand up, which is difficult for long periods of time, which it turns out is a common situation with autism.
Teaching makes my nervous system run on overdrive. I feel a lot of pressure to seem highly capable though I often literally don’t know what day it is.
Now I know I am autistic, I can apply this lens to work work. Now I know my social anxiety isn’t going anywhere, is part of my autism, I can stop fretting about it. Can stop trying so hard to override it.
And who knows, maybe knowing I am autistic will make teaching feel different. The self-understanding here feels very valuable.
Are there parts of teaching I can change to better suit my skills and struggles? Are there reasonable adjustments that can be made now I have my certificate from the doc? I don’t know. But there might be. And that makes me feel hopeful.
And if not, I won’t feel like a failure in the same way if I have to give it up without understanding why.
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3. Validation and confidence in disclosing
I’m not the sort of person that is confident my perspective will be validated. Let me try that again. I’m not used to being validated. People, generally, don’t sit up and pay attention when I talk. I get interrupted and questioned and asked to explain a lot.
My experience of not being listened to has driven me to expect/fear that I will not be listened to. (I don’t know, I guess I’m just crazy like that.)
This is why I wanted to have a professional diagnosis, rather than self-diagnosing as many people in the community do. It can be hard to get people to take me seriously as it is (outside academia, I mean) so I just knew self-diagnosing wasn’t going to work for me.
Annoyingly, since I went private, some people have still seemed dubious. A clever friend of mine asked who had diagnosed me, and what their credentials were, and I found myself feeling very defensive.
Would an NHS diagnosis have avoided this?
I don’t know. I also don’t know if I’d have been able to get one, for the reasons I outlined above.
So was it really worth it?
It’s only been a few months, but I would say, yes. A RESOUNDING YES.
Self-compassion is life-changing. Lovely to behold! And even though hardly anyone in my life gives me any break at all for my autism I give myself breaks aplenty, and that makes a huge difference.
Autism is invisible. Nobody understands the inner experience I have been having. But now, at least, I do. And that means everything.
It might also be a good method for weeding out the unsupportive members of your circle. (Do you know who I mean?)
Getting a diagnosis has reframed the many difficulties of my life. I always knew how hard I had worked, just to get by, just to survive, but I never understood why it had been so challenging. I have put up with poor treatment many times because I didn’t know I could expect any better, and now I can stop shaming myself for that.
A diagnosis is allowing me to work towards taking my own needs seriously, and giving myself a huge break whenever I need it. Which is every day, without exception.
Self-acceptance is challenging but I’m making progress.
I’m pushing toward a better future, and it feels good.
And I am learning how to validate myself.
Chelsey Flood is a writer, author, and lecturer. They have been featured in The Startup, Medium, The Bristol Cable, and more. Follow them on Twitter.