Day 2405 – Neurodiversity

Neurodiversity (noun): the idea that people with brains that work differently are part of the normal range in humans. Often used as an alternative way of considering the autism spectrum.

https://www.oxfordlearnersdictionaries.com/definition/english/neurodiversity

Since my discharge from the community mental health service just before the pandemic I have been on the waiting list for autism assessment. This has been over two and a half years now. A screening questionnaire indicated that I might have autistic traits. Whatever the last two years didn’t give me in terms of diagnosis or confirmation, it did give me plenty of time to research the topic. And I learned a lot. Additionally, because autistic traits are covered by the Equality Act, I was able to get Access to Work support via a workplace mentor. Despite me feeling like fraud for not having a formal diagnosis and worrying that everyone thinks I’m just making it all up, the insights and strategies I learned since have been invaluable. And despite the irony being that the support is workplace tailored, nobody available to support me in “real” life, some of the tips and tricks naturally spill over into life outside work. And I am glad that they do as they have made me feel more like I matter and am not as stupid or weird as so many people have made me believe to be. Well, they still think I’m weird but I can now evidence my weirdness with facts from the “neuroverse” (get it? – neurodiverse universe).

In short: everyone is neurodiverse, meaning everyone ticks a little different. But about 20% of the population are neurodivergent (a similar ratio exists for introverts and highly sensitive people), meaning their brains are literally wired differently, hence they think and act a little different to the perceived 80% norm. That is both a curse and a blessing, however, purely based on the available opportunities and support. Those with the ability to think outside the box are those that bring forward change and inventions and generally make a difference to the world. Unfortunately they are also mostly misunderstood and spend the majority of their lives as “that weird loner”. I’m purposefully generalising to make a point. Of those 20%, only about 16% are in employment. I am one of them. I struggle, have done so since kindergarten. I never quite fitted in and prefer my own company and interests to those that others pursue. I’m bad at anything group related, be it sports or simple socialising, hence struggled in school and now at work. But, because I generally manage, referred to as high functioning, I am often mistakenly seen as coping just fine.

In order to survive and fit in I have developed a persona that allows me to be liked and accepted. Unfortunately, unbeknown to myself whilst “building my mask”, this has negatively affected my mental health, the aftereffects of which I am working hard on overcoming. At nearly 40 years of age, I should be a grown up who is comfortable in the world, but I still feel like that first day at kindergarten that I spent standing by the door, intently staring at my feet. Only that I was just as intently observing what was going on, learning what I didn’t know about how one behaves in kindergarten. A rather worried nursery worker suggested my mom stay with me the next day as she feared I was a flight risk, but the next day I was a completely different person, as if I had spent my whole life in kindergarten. I had successfully set up a new persona to fit in, a practice I still continue to this day, just to get by in everyday situations that seemingly come so natural to others.

It came as a bit of a blow when I attempted to get the autism assessment expedited as my mental health continued to suffer and instead got told by the psychiatrist that I was definitely not autistic and that an assessment would be a waste of time. There is increasingly more evidence coming out that autism registers differently in females than the stereotypical symptoms boys have historically portrayed. But that is only a vague reassurance, just as vague as the symptoms themselves and the fact that everyone, neurotypical or neurodiverse, displays either or all of them at one time or another throughout their lives. Who am I to claim this title?

The practice of “identifying as” is becoming increasingly more common these days, mostly around gender specifics but also more so in the neuroverse. If you identify with symptoms you can self-diagnose and basically identify as whatever you like. Just that the cynics amongst society will likely not believe you, sending you back to square one. There is also something to be said about support, that although you don’t need to have a formal diagnosis in order to request adjustments at work, it just makes it so much more difficult to get the right support, especially if those around you, especially your line manager, doesn’t fully understand your struggles.

“Everyone is on the spectrum” is a much debated comment and just as much detested in the neuroverse. To someone who struggles with differences on the autism spectrum, that mere comment can be the equivalent to a massive blow that, in as much time as it takes to utter the words, instantly nullifies and dismisses all the struggles that person faces every single day. Taking me back to the 80/20 analogy from above: we are all on a spectrum displaying different human traits, BUT the autistic spectrum applies only to 20% of us, and this minority needs to be heard and understood and supported. Listen to them and don’t assume you know what they are on about or dismiss their needs as quirks they should just be getting on with! Just because you can’t relate or don’t understand doesn’t mean that that person doesn’t need specific support. Your generally well-meaning support that works so well for others might not actually help here.

Currently I identify as neurodivergent with autistic traits. That is in the absence of a formal diagnosis but backed up by the evidence I have gathered whilst reading up on the subject and listening to other’s personal accounts. The constant sensory overload, the ensuing overwhelm and exhaustion, the noise aversion, not dealing so well with sudden changes, the sudden mood changes, tantrums and shut downs, the slower working memory, the mild dyslexia and dyspraxia, the need for clear answers and my straight forward and original thinking, to mention but a few, all fit the bill. Ironically, possibly a trait in itself, I am unable to fully communicate my needs and move on until I have had the formal assessment with a clear outcome. My need to know who I am is strong but still I am none-the wiser. So the future is yet unwritten and only time will tell how my sense of identity will change with the times.