Seeking an Autism/ADHD Diagnosis and its effect on mental health
Posted: 28 Nov 2023Recently we asked our community on their thoughts about the challenges and experiences associated with seeking a diagnosis for ADHD and/or Autism.
For those who don’t know, ADHD and Autism both fall under the spectrum of neurodiversity; a broad and debated term covering a huge range of brain functions, mental illness and how we interact with the world around us.
Over the past 3 years, we’ve seen a huge rise in the number of adults seeking diagnosis, with the ADHD Foundation reporting a 400% rise, and the UK’s NHS reporting autism referrals having trebled since 2019.
Amongst an array of other factors, this resurgence has had a huge impact on those currently seeking support, with extreme waiting lists on public health systems being reported.
The Challenges
Mags Donaldson mentions this as one of the biggest challenges in seeking a diagnosis, also mentioning that “I also felt a bit of a fraud – I was 38. If I was autistic, surely SOMEONE would have noticed by now? So I was worried about taking up the space of someone who ‘genuinely’ needed it. Despite being told by my psychotherapist to seek diagnosis.”
Chochy discusses their own challenges in seeking a diagnosis, highlighting the level of self-advocacy that they need to start the process.
Contrary to popular belief, doctors and mental health professionals in my experience often don’t see a reason to give a diagnosis. The result is a process where every step you have to fight to prove why you need one. I even had a doctor for one ask me why I would want to be labelled with a condition that might make MH professionals think worse of me.
Atari shares her own experience, highlighting that “the biggest challenge was actually starting the process. It ended up taking me many more years, until I was in my 30’s, to actually get on the waiting list for a diagnosis.”
The thing I was trying to get diagnosed for was one of the very same things that was keeping me from getting diagnosed. It was like a vicious circle.
Another side to this is looking at the concept of appearing ‘high functioning’ and how that can also have an impact on how you are treated. Kerry discusses this experience; “I have always been a high achiever, someone well-liked, and someone who could seemingly manage it all. So, when it came time to seek out mental health treatment, it was difficult to prove that I needed help. When I did receive help, it was easy for my care staff to dismiss me because I was “so self-aware”, because I am “high achieving”, and because I am “well adjusted”. I’m certain they believed me from what happens behind closed doors, but, it was difficult to see the impact in my day-to-day life until it got really bad.”
So, once you get that diagnosis, how does it feel?
Similar to our mental health diagnosis article, two of the top words mentioned here were ‘validating’ and ‘relief’.
Panne, who also discussed the lack of accessible and free resources available to those looking to get support, said that by far their biggest feeling upon receiving a diagnosis was validation. “I no longer felt that I needed to caveat my mental health in discussions by adding “I’m self-diagnosed” when I can now just say “I have ADHD.” I felt proud that someone else had seen in me what I’d known all along, but also disheartened that it took years of self-advocating for someone to even look.”
Atari found the process of being told about her diagnosis to be surprisingly emotional, “when the psychiatrist told me she would be diagnosing me with inattentive ADHD, I cried immediately. I apologised, and I was astounded when she explained to me that it was a normal reaction. Finally getting a diagnosis was the most relief I’ve felt in my entire life.”
What can we do?
Deciding whether or not to seek diagnosis is a completely personal choice, with many nuances affecting our decision making process. Here are some final thoughts from our contributors on what you can do to make that process a little bit easier.
Kerry shares her advice following her own journey; “Don’t give up. Come prepared with anecdotes. If it’s safe to do so, reach out to your family who can speak to how you were as a child. Take time to reflect to determine if receiving a diagnosis is right for you. Self-diagnosis is often valid, but a professional diagnosis can impact things legally, professionally, and else.”
“Don’t be afraid to access tools or resources without/or while waiting for an official diagnosis,” Panne adds, “your mental health and experiences are just as valid and if you find a coping mechanism or support system, then you deserve to utilise them. Once you have a diagnosis or are on a diagnosis pathway, share how you got there with everyone you know, they’ll need your knowledge.”
Lauran encourages others who might be unsure of whether to look for support, “Firstly, DO IT! Whether diagnosis leads to you getting medicated or therapy, knowing that you have a neurodiversity is half the battle. Once diagnosed you’ll be kinder to yourself for you ‘failures’ and you’ll be able to put things in place to help you cope with life/work/difficult situations.”
It’s important to recognise that not everyone’s journey will look the same when seeking support, whether it’s for ADHD or anxiety. “It’s gotten much better, but there is still a stigma when talking about mental health and being neurodivergent in the black community,” Atari explains, “in many cases you will have to be your own biggest advocate. No one can make you go into the diagnosis process, so you must do that for yourself! Think about how your symptoms have affected you throughout your life, and make sure to write down everything you would like to mention and/or talk about so that you can have an honest and open conversation that gets down to the root of what you’re going through.”
Resources on ADHD and Autism
Learn more about autism
Learn more about ADHD
Written by Rosie Taylor
