Happy Autism Acceptance month! As part of celebrating this month, it feels appropriate to do a deep dive into my experience of getting a diagnosis. As always, my ponders come from my own experience, and if they resonate or help others along the way, then that’s an added extra.
Let’s get stuck in with the number one myth, “Everyone is getting diagnosed these days.”
Not everyone, no. Is there an increase in diagnoses? Sure. But that doesn’t mean there are more autistic people. Because, guess what? People the same amount of people are autistic with or without the diagnosis. What is happeneing is that more people are finally being recognised, validated, and diagnosed. As a reminder, people are not suddenly autistic because they have a label – they have always been, and always will be, Autistic.
In this blog I’m going to take you through my experience and journey of getting diagnosed. If you haven’t read the post before this, I recommend you do as it provides some context leading up to the decision to seek an assessment.
If you have read the earlier post, you’ll know that when Ade was diagnosed, and the two of us started learning more and more about autism, as well as how it presents in women. I was further acknowledging my own traits. Traits that I’ve never denied have been there. But in my head, I was thinking “how many traits equals a diagnosis?” This is not how it actually works.
Step 1: The Research
“Everyone is a little bit Autistic.” Reminder – No, they aren’t. This statement is the equivalent of saying to someone with heart burn, “everyone is a little bit pregnant.” No, they aren’t. However, there is no denying that some, even many, traits of autism are human traits. Therefore, those who are not autistic, can and will still experience these traits, and not be autistic. It’s about impact. The extent in which these traits affect the individual. As a general opinion, I do think those that say ‘everyone is on the spectrum’ are likely to be undiagnosed, and what is actually happening is they are recognising their own behaviours from other autistic people. But I digress.
My research was very much grounded in the experience of others; listening to podcasts, reading books, watching videos on YouTube. Listening to others as they shared their experiences on what it means to be autistic for them. Many things started to resonate. But where do I go from here, and what do I do with this knowledge? Quizzes of course!
This is still part of the research and is likely a whole post in and of itself, but there are a number of screening tools that can be used to help indicate whether an assessment is worth it. That is where Embrace Autism came in. They are an online resource for those who want to learn more about the condition.
I did all of the screening questionnaires; AQ-10, AQ, RAADS-R, Aspie, and Cat-Q were most insightful. All coming back with the same results – evidence of being Autistic.
Step 2 – The GP
Now equipped with some evidence, the next step for me was to speak to a GP. If I wanted an assessment, I’d need a referral. I want to take a moment here to acknowledge my privilege. Due to Ade’s work, we have private healthcare that enabled us to seek private autism assessments. However, we still needed a referral from an NHS GP. I wholly acknowledge that there is a huge deficit in NHS Scotland for those seeking assessment whether ADHD or Autism. So, there I am, with the doctor, explaining that I’d like a referral. When he asked why, I presented my paperwork and said that I needed to know either way. There was too much evidence here for me let it go without knowing. The doctor agreed and gave me the referral letter.
Step 3: Paperwork and the Screening Assessment
In order to apply to have an Autism assessment, there were a couple of forms I had to complete. These were the first of many that I’d complete. The first ones were short in comparison for what was to come, and once submitted, the company – Problem Shared – gave me a date for my screening assessment.
During the screening the clinician and I talked about 1. why I wanted an assessment (I needed to know one way or the other), 2. what my traits were (many), 3. what I thought the outcome would be (that I wasn’t autistic), and 4. what it would mean for me (closure.) Spoiler: it did not give closure. It was the complete opposite in fact. It was like an opening, a new way of understanding myself alongside how and why I am the way I am.
Imagine my surprise at the end of the screening when she said, “yes, there is plenty of evidence here to warrant a full assessment.” I was a bit taken aback to say the least. A couple of days later I was given a date for the assessment, twelve weeks from now.
Step 4: Assessment Preparation
Prior to the assessment, there was more paperwork to complete. This had to be sent no later than one week before the assessment.
The paperwork included a full medical history with autism questionnaire completed by me. As well as an informant questionnaire – this was completed by both my mum and Ade. They were lengthy documents that looked at my entire life from being in the womb to toddler, to teen and adult, both from my point of view, and from the perspective of others via the informant contributions.
It was all sent via an online portal.
Step 5: The Assessment
The day arrived and there was a lot to get through. My assessment started in the morning and would last two and a half hours.
At the same time, Ade who was my informant, was also interviewed for the same amount of time.
During my assessment, the clinician worked through the answers I’d submitted from the questionnaire. This took approximately two hours. I then had a series of activities to complete.
Task 1 – “looking at a cartoon image, is this the sort of place I’d be interested in going?”
The image was of a busy holiday resort. It looked like chaos. Without missing a beat, I responded “absolutely fucking not” Then apologised for swearing. She asked me why I wouldn’t go there. I expanded. The follow up question was “was there anything in the image you’d like to try that you haven’t done before?” I laughed and said “If I have to pick I’d say have a go of the golf buggy.”
Task 2 – Explain what is happening in the following images.
The story was a cartoon woman working in a jewellery store, with a man coming in to rob the place. There were several funny things in this; weird facial expressions and actions that didn’t make sense – the man apparently mistakes his getaway vehicle with a police car, and strides straight in for arrest. *I’m still rolling my eyes at how silly this is*
Task 3 – “Tell the story of what’s going on in this book.”
The book was about a collection of frogs, who, at the stroke of midnight, got magical powers and rode their lily pads into the nearby town to cause havoc. The art work of the storybook was terrifying. But I managed to explain each of the pages of the picture book, except one which I couldn’t connect to the rest of the story.
At the end of the assessment, I was told that we’d reconvene in later that afternoon. This allowed both my clinician and the one who spoke with Ade to compare notes and reach a conclusion.
Step 6: The Result
Obviously if you’ve been following this far, you’ll know fine well what the outcome was.
It went like this:
“So, yes. After the group consultation we can confirm that you are autistic, and we also believe that you may have ADHD too.”
My response was to cry. Why, you ask? I actually don’t know. It wasn’t sadness, but it wasn’t relief either. It was a realisation, even a validation – one I wasn’t expecting. That there is a reason for why I am the way I am; someone who has never really fitted in, who has always felt a little different, and who has always had to work twice as hard to be half as good.
That was back in December 2024. And although I didn’t know it at the time, nothing would change, and everything would change.
So next time when someone says “everyone is getting diagnosed” consider the person and the process. It’s not a 20minute appointment with a GP. It’s a thorough assessment that leaves no stone unturned.
Everyone is not being diagnosed autistic. However, our understanding of what Autism is has and continues to develop. As a result, more and more Autistic people are being recognised and validated. Which in turn opens up valuable self-compassion, support and understanding.
Autism is a spectrum and every autistic person is unique. Ultimately, we have a brain that is wired differently, and that difference allows us to see and experience the world differently. I think that is something that should be celebrated and accepted, because, let’s face it, if we were all the same, life would be pretty beige and bland.
Sending love out.
Steph x
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