The Limbo of an ADHD Diagnosis

Alice Bennett

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More and more people are finding out they are neurodivergent. At the same time, many, like myself, are on waiting lists for a diagnosis, living in uncertainty without any support. 

During this new era of increased visibility for neurodivergence – particularly on social media – many people are making the discovery later in life that their brain works a little differently. They are not lazy or weird, as people have told them. They have ADHD, dyspraxia, autism, or anything under the umbrella of ‘neurodivergent’.

Difficult ADHD Diagnosis

I didn’t start seeking an ADHD diagnosis until I was 22 in my last year of university. Although discovering I have the condition has been life-changing, I am now living in an awkward in-between period as I wait for an official diagnosis.

“People may have to wait between 18 months and two years for an ADHD assessment…”

Because there is more awareness of neurodivergence, there has been a dramatic uptake in referrals for diagnosis. The BBC reports that referrals for ADHD has risen 700% since last year. This sudden surge, alongside a lack of funding and resources, has resulted in insane waiting times to get a diagnosis through the NHS or associated third parties. People may have to wait between 18 months and two years for an ADHD assessment, and going private is not financially viable for many.

So, now 23, I’m waiting to hear back to confirm I actually have the condition. After a long and arduous process of filling out questionnaires, back and forths with my GP and, ironically, forgetting to do these things for over 6 months, I have just finished my masters and am entering the ‘real world’ with absolutely no support for a very real and often debilitating disability – and no immediate diagnosis in sight.

My Experience with ADHD

Neurodivergence, as I’ve come to realise, is highly variable and dependent on the person. It shows up in different ways. Some display more obvious symptoms whilst others put on a ‘mask’. This is often the case with neurodivergent women, non-binary people and BIPOC due to white and male-centric diagnostic criteria. As a result, these groups are less likely to be diagnosed. For example, some studies show racial disparities in autism diagnoses, as well as many women who are missed out or misdiagnosed due to gendered autism stereotypes.

“There’s nothing wrong with you, the world just isn’t built with you in mind”

This means many people slip through the cracks. For example, I displayed typical female ADHD symptoms. I was quiet and excelled in school, but also frequently forgot things like homework and books. Because I wasn’t loud and causing trouble in the classroom, my neurodivergence went unnoticed.

https://twitter.com/adamfare1996/status/1712517136567120147?s=46&t=kcapWIYeG5FgoFHci5D8ZQ

It wasn’t until I saw a counsellor for ‘anxiety’ that I found out about my condition. Said counsellor told me what every neurodivergent person needs to hear: “There’s nothing wrong with you, the world just isn’t built with you in mind”. It was an extremely validating experience, but no one really talks about the aftermath of this revelation.

Now what?

So, I know I’m neurodivergent… now what? Well, thankfully a lot of people take your word for it when you say you have ADHD or autism, and don’t demand to see your diagnosis. Regardless, this period feels like a kind of limbo, and I often feel like a bit of a fraud. I remember bonding with someone over our neurodivergence a while ago only for them to ask me: “When did you get diagnosed?”. They were disappointed to hear that I’m still waiting for confirmation – as if it doesn’t exist until someone else says it does.

All my life I have felt out of place with neurotypical people – even those who are perfectly nice to me. But I still don’t feel fully part of the neurodivergent community either. It’s a very strange feeling to go your whole life desperately trying to hide this part of yourself, only to get to 23 and feel like you have to prove that you are actually struggling in a world that isn’t built for you.

“…without the backing of an official diagnosis, it’s even harder to not beat yourself up”

It can lead to a lot of second-guessing and imposter syndrome, as you compare yourself to other neurodivergent people. You tend to downplay your struggles because others seem to ‘have it worse’. This is a rhetoric also perpetuated by many neurotypical people whose ideas of ADHD and autism are extremely stereotypical and outdated. I think this self-doubt will always be there, even with confirmation from a professional. But without the backing of an official diagnosis, it’s even harder to not beat yourself up. It difficult to stand your ground, advocating for yourself and any accommodations that you need.

What about ADHD self-diagnosis?

The idea of self-diagnosing is a controversial one. I do think a lot of research and self-reflection is needed first. Despite the waiting times, I would still encourage people to go to a professional to find out for sure.

However, self-diagnosing has proven to be a really positive thing for me as I anxiously and impatiently wait for confirmation that may not come for months.

Self diagnosis is often the first step to professional diagnosis.

People may think they broke a bone because the symptoms match that diagnosis. They go to the Dr to make sure. Same with ADHD, autism, infections, and most other conditions.

SELF DIAGNOSIS PRECEDES DIAGNOSIS

— Nicole Melzack (they/them) (@nmelzack) October 10, 2023

 

Since finding out that I have ADHD, rather than waiting around, I’ve tried new coping mechanisms specifically catered to the root cause (ADHD) rather than trying to treat the symptom (anxiety). I have noticed that it has helped a lot with self-regulation and organization, although it still isn’t perfect. It has also enabled me to better express myself and how I’m feeling to others and explain why I act the way I do.

“…self-identifying as neurodivergent is perfectly valid”.

I believe that no one knows your mind better than you, and in this era of limbo, I think self-identifying as neurodivergent is perfectly valid. So, for those of you in a similar position to me, I wish you the best of luck – and know that there are people out there who will validate you without a diagnosis.

READ NEXT:

• WOMEN WITH ADHD: A HIDDEN JOURNEY

• ‘CYBERCHONDRIA’: TIKTOK AND MENTAL HEALTH SELF-DIAGNOSIS

• WHY ARE WOMEN MORE LIKELY TO SUFFER FROM DEPRESSION?

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Featured image courtesy of Ümit Bulut on Unsplash. No changes were made to this image. Image license found here.