people who were assigned female at birth (AFAB) aren’t diagnosed as often as those assigned male at birth.... This results in neurodivergent AFAB growing up into neurodivergent people who get diagnosed later (that is, if they are lucky enough to afford it or wait the long NHS waiting lists). Diagnosis is often inaccessible to many adults due to the financial burden or long waiting lists, which is why I believe self-identification/diagnosis is valid.
My story
I was diagnosed as dyslexic and dyspraxic at university, and then I got my autism diagnosis at 23, once I pursued it myself.
It took me many years to realise that autism would explain so many of my challenges, strengths, and why I never felt like I fit in. It was only when I went to university and enrolled in an elective module called ‘Autism and Education’ to learn about autism accommodations in schools that things started to fall into place. We would have talks from #Actuallyautistic lecturers who would describe these experiences that aligned with my own. But during this time, I was overwhelmed by the number of hospital appointments I was attending for my hip surgeries, so pursuing an autism diagnosis fell on the back burner.
Eventually, when I finished my degree and had both surgeries, I decided it was the right time to go to my GP. Unfortunately, I had a similar experience to many other neurodivergent adults who approach their GP about diagnostic assessment. The GP didn't ask me about my traits but instead told me ‘well you’ve got a degree and a relationship so I'm not sure you’re autistic’. Luckily I knew this was likely to happen, and I had prepared a huge list of all my traits and sent them to the GP, which would change his mind.
But then came the long wait… it took around two years to get my initial appointment. I felt so much pressure because I’d waited so long, and I knew in my heart that I was autistic. I couldn’t bear the idea that this professional could invalidate something I felt so strongly about.
Thankfully the assessment wasn’t as scary as I thought, and my assessor was very understanding! When she finished the assessment and told me I was autistic, I cried. I was so overwhelmed with pure relief! I left the centre so happy yet so so sad at the same time. The validation was huge; 'there's nothing wrong with me; I’m just autistic'. Having that professional validation meant the world to me, I didn't necessarily 'need' the diagnosis for any other reasons, but pursuing the diagnosis was the only way I knew of that could provide that validation.
Over the next few months, I had a deep sadness for my younger who didn’t know I was autistic… who struggled every single day not knowing why she was different, why no one else seemed to understand her or how her brain worked.
Experiencing a rage of emotions after diagnosis or self-diagnosis is normal, and the emotions that come with it can change over time.
Diagnosis isn't vital for all neurodivergent adults, so some GPs hesitate to refer us for assessment. However, there are benefits, including:
Access to workplace adjustments
understanding yourself better
helping you explain to your family
validation
access to medication (e.g for ADHD)
a sense of community
access to benefits (although id like to add that some people believe money to be the main driver for adult diagnosis, in fact, getting PIP is a very difficult and unpleasant process... so this is not generally the reason people seek diagnosis!)
On the other hand, self-identification can provide many of these things too:
you may still be able to get accommodations and adjustments
usually, those who self-identify have done huge amounts of research into their traits, which will help you understand yourself better
much of the neurodivergent community accepts self-identification as being valid
Self-identification is valid in my service! All support services I provide are available with or without a formal diagnosis.
The community, such as the online #actuallyautistic community may help with validation, through connecting with others and sharing experiences.
Diagnosis does have barriers, its high price tag for the private route, hoop jumping and long waiting lists for the NHS. In response, I have started providing a middle-ground, 'guided self-assessment'. The idea is this will help to provide some of that validation for clients without the huge price tag.
I also provide reports that clients have used to approach their employers about adjustments. Similarly, some people use them to explain their traits to their family or to help provide further evidence to their GP for referral for diagnostic assessment. But overall, I think it can be a great way to bring a little bit of clarity as to your neurotype. Although these sessions do not replace a formal diagnosis, they can be a great starting point.
Many late-diagnosed adults feel that they have been given answers e.g 'you are autistic!' but are also left with a lot of unanswered questions! and one-to-one professional support to understand and process a new diagnosis isn't widely offered on the NHS; that's where I come in! Take a look at my services to find out what I might be able to support you with.
If you would like to learn more about how I support neurodivergent adults, visit:
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