Why I Paid £700+ For A Private Diagnosis

Even though people rarely believe I'm Autistic.

Autism was first suggested to me as an explanation for my difficulties in November 2020. I had been signed off work for a couple of weeks in March because of stress (which I now recognize as autistic burnout) and suspect I only made it through the subsequent term because lockdown enabled me to work from home.

A good friend with whom I’d been sharing my work/life struggles put me in touch with a Special Educational Needs teacher pal of hers. This woman allowed me to email her with what it was I found difficult on the off chance that she could point me in the direction of support.

After reading my rather strange and personal email, she wrote this:

“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, rigidity of thought, e.g. compulsive hobbies such as trains and car engines.“

I was shocked because I had never for a moment considered Autism.

The first step in my autistic awakening

But 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 phenotype. Feeling inspired, I called the GP to make an appointment. Unfortunately, this was discouraging because although 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 very recently.

“And do you have restricted interests? Repetitive movements?” he asked, slightly dubiously.

I’m impatient and I have a salary (for the first time in my life) so I started to research private diagnosis. By now, I was obsessed because for so long I have wondered what is ‘wrong’ with me. 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, I think). 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.

A few days later, I had a diagnosis.

In November 2020, the SEN teacher reluctantly and cautiously mentioned autism to me. In December I recieved confimation I was autistic. And not only a little bit autistic, but scoring highly in all four of the different areas (I’ll write more on this soon).

“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?

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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/catsitter. 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 wth myself. Finally, I understand what my issue is. I realize that processes with multiple steps are difficult for me. I can’t always think if I’m put on the spot. Scheduling is painful.

I no longer beat myself up if I am struggling with deciding which order to do things or forgetting where I put things.

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.

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2. I am working towards creating a better future

I'm not sure my job suits me. It's a great job, but it has a strong performative element, and it makes my body hurt. Also, I have to stand up, which is hard for long periods of time. Everyone tells me it's a brilliant job to have. As good as it gets. And it is. Just maybe not for me.

Teaching exhausts me. It makes my nervous system run on overdrive. It physically hurts to be on display so much. I feel a lot of pressure to seem highly capable though I often can’t keep track of what day it is.

Now I know I am autistic, I am able to realistically consider whether I can make the job work. Now I know that my social anxiety isn't going anywhere, is part of my autism, I can stop trying so hard to override it.

Acceptance is a crucial step. It is only after I have had acceptance of the reality of a situation that I have ever been able to change it. Can I accept the difficulties of my job?

Are there parts of it I can change to better suit me. Are there reasonable adjustments that can be made now I know I am autistic? I don’t know. But there might be.

And if not, I won’t feel like a failure in the same way if I have to give it up.

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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 common 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.)

As a result I wanted to have a professional diagnosis, rather than self-diagnosing as many people in the community do. I find it hard to get people to take me seriously as it is, 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 outlines above.

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So was it worth it?

It's only been a few months, but I would say, yes. A RESOUNDING YES.

The self-compassion is lovely to behold. And even though hardly anyone in my life gives me any break at all for my autism and ADHD I give myself a lot of breaks, and that makes a huge difference.

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 surviving, but I never understood why it had been so difficult. I have put up with poor treatment, because I didn't know any better, and lately I have stopped 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.

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Read:

More on executive function by Maureen Bennie

The issue with Asperger’s by Devon Price

I thought I was lazy, the invisible struggle for autistic women by Reese Piper

Autism and the spiky profile by Justine L

Listen:

Friend of the newsletter Johnny Profane talked about shutdowns and meltdowns on BBC podcast 1800 Seconds on Autism

Watch:

Autism criteria explained by Yo Samdy Sam

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Chelsey Flood is the author of award-winning novels Infinite Sky and Nightwanderers, and a senior lecturer in creative writing at UWE. She is currently working on a literary memoir about getting sober and then finding out she’s autistic and a new YA novel.