Dreaming Autism Screening into Reality
My journey to Autism/ADHD diagnosis, recognition, being able to write about my experiences, in the hope of helping other neurodivergent folks
In the UK, it can be a real postcode lottery as to whether your neurodivergent brain will ever get the chance to be diagnosed. Some doctors can be quite dismissive of adults who are seeking to be recognized. However, there are also many remarkable general practitioners who truly listen and clearly have patients' best interests at heart.
From my lived experience I’ve encountered both sides of the coin.
I’d like to share my story with you. Perhaps it will help in some way to nudge you towards getting the answers you certainly deserve.
Had I known the terms Autism & ADHD in my youth, things may have been different. However, I found myself truly self-discovering my own, much masked, neural type in my late 40’s.
Previously, to be totally honest, I've been convinced I was from another dimension! I'd often be heard saying I despised humans, then later on realized some humans were wired similarly to me, I'd just not met them yet!
It was like we were hiding or hidden, in an Adult Suit or Human Suit! Read my poem Adult Suit here:
I’d like to make it clear, although us Autistic folk are often misunderstood, I thoroughly enjoy being different. I’ve never craved fitting in, my neurodiversity is something I cherish.
I wouldn’t want to change who I am or use medication for it. I completely empathize with those whose life experience is unbearable or extremely difficult because they are different. I have no judgment on folk getting help or taking medication because even if we’ve got the same diagnosis, we are still all unique and have vastly varied lived experiences. We will present ourselves to the world in vastly varying degrees of difference.
I feel it is always important to remember that.
I digress, so back to the story:
While I lived in Buckinghamshire in the UK, I struggled to be seen and heard when requesting a screening for my neurodiversity. A male doctor kept pointing me towards hormone replacement therapy, blaming all I was experiencing on menopause.
This made absolutely no sense, how could I have been struggling my whole life with menopause? With a cacophony of failed relationships, romantic ones and friendships, there needed to be a better answer. Living a chaotic, drug fuelled existence — Obsessed with collecting feathers, stones, and crystals. Spending days researching things no one else finds interesting, such as the origin of Fray Bentos Pies!
The doctor in Buckinghamshire was often blasé and dismissive with me, ignoring all the signs. It was clear to me that he was judging me on his own ideals. His surgery office wall plastered (pun intended) with photos of his perfect family, beautiful wife, beautiful children, exotic holidays and his seemingly perfect life…
At one point, I decided to take a close friend along for support at an appointment, curious to see if they would help me present my neurodivergent case. I thought perhaps having support with me would, in turn, show a different side to my doctor.
Alas no! He was just as disinterested and disingenuous towards me.
This left both myself and my friend dumbfounded to say the least!
In 2018 I became a Widow.
In 2021, I was tying up loose ends and decluttering my marital home. I was planning to move to a whole new life, in a new county, somewhere no one knew me.
I was excited at the thought of this move.
At the same time, I was also totally daunted by this big leap of faith.
The very same week I moved to North Shropshire, UK. I registered myself with a local practitioner, which came very highly recommended by the locals.
I moved into my new home on 3rd December 2021. On the 8th of December 2021 came my first telephone call with my new doctor.
What an absolute result that was, I thought I’d won an emotional lottery. This GP really, truly, listened to me and my story. After that 45 minute call where I spent my time venting my whole entire life.
I was finally on the list for a pre-screening!
I couldn't quite believe it!
I was informed it would be 2 year waiting list. Since I’d been waiting all my life, 2 years seemed pretty soon!
In December 2023, I recontacted my practitioner and was provided with a telephone number to call Autism Hub, A4U, Shrewsbury.
I called them on Tuesday 5th December, 2023 and left a message, the same day they tried calling me twice. Living a Rural Shropshire life, means phone signals at home are pretty poor, hence missed calls. I checked my emails, to my delight there was an email sent by A4U, on the 5th December, 2023.
This was the email content:
Good morning,
In response to your voicemail, I can confirm that you are on our waiting list for an Autism pre-screening appointment.
Unfortunately, our referral numbers are very large, and we may still not be able to offer you an appointment just yet but please be assured, we have not forgotten about you.
If possible, please could you complete the below questions so we can find out more about your current circumstances and see if we can provide any help/support whilst you are waiting for your appointment:
I've never replied to an email so swiftly!
I made a hot brew of Red Bush Tea and went through the questions like lightning, feeling seen, heard and understood — simply from writing my responses.
The relief running through my body was immense.
I struggled with weighing down a few options, so went on to type my feelings about why I couldn't choose an option. I thoroughly recommend you do this too, don't try to squeeze yourself into a box, be open and expand where you need to.
I was asked in the email if I would take an appointment if there was a cancellation anytime soon. I’m not usually a fan of last-minute things sprung on me...however, this was a totally different ball game, so I wholeheartedly agreed to this.
Fortunately, within days I was contacted to say there was a slot available for 12th December 2023 at 10am.
A 2 hour Zoom call took place.
The dopamine hit was overwhelming, I cried with relief.
The assessor, Lucy, was absolutely fantastic, so empathetic and clearly on the spectrum. She helped me answer all the questions with necessary prompting and explanations of parts I was struggling to answer.
I scored 9 out-of 10, so was well on my way to the more official Screening process.
On the 23rd January 2024, I heard back from the Adult Autism Team in Chester, UK, about my official screening that will take place soon.
This email said:
“Please find attached the pre-assessment questionnaire, supporter’s questionnaire and consent form for completion.”
I had yet another 2 hour, in-depth screening about my entire life with Lucy, in preparation for meeting with the professional assessors as per this screenshot:
I'm so incredibly happy with this outcome and hope to have my Autism officially recognised by Springtime this 2024!
There is only one thing that is not such good news
I wasn’t clear from the get-go with my doctor, I needed to be specific that I also wanted an ADHD assessment, so guess what?.. I’ve another 2 years to wait for that!
Make sure you’re clear when seeking your diagnosis as they are done separately.
To be honest, I’m pretty chill, and all. No worries, it’s one step at a time.
After all, my main reasons for seeking diagnosis have always been recognition, self-awareness, and writing about my neural diversity to help me and others.
Which is exactly where I am right now, tapping away in my favourite café.
The next goal was to be accepted to publication on Medium to reach more folks
I’m truly grateful for my current Doctor and Lucy at A4U for the recognition. Over the moon and truly thankful to Ohitsjustsue for accepting me in this publication, Neurodivergent.
I wrote this article specifically for the Neurodivergent publication, as I’m really curious how different counties here in the UK and countries across the world are helping — or in some cases hindering — adults with neurodiversity.
What have been your wait times and challenges in receiving diagnoses?
- I’d also be interested to hear in the comments below about other folks experiences in seeking diagnosis, especially from UK counties and the process involving the NHS. I’d also love to hear what other countries have as designated health care services for Autism and ADHD.
I wish you all the very best and hope you are seen and listened to by those you wish to help you on your diagnosis discovery journey .
©️Willow Innershire Sterrick 2024
Thank you for using your precious time to read my work. I appreciate you.
