Notes From A Tricky Brain

[Disclaimer: *I started drafting this post weeks ago, so the news reports referred to are older than suggested. On a similar note, and to explain my hiatus from this blog, I’ve been ‘dealing with some shit’ recently and didn’t want that to come across here. Back in the day, I wrote an altogether different type of blog which was more of a venting space. If you want to explore it, the link is here, but be warned that a lot of it is quite grizzly…even the domain name is a little messed up!]

There was a piece on BBC Breakfast a couple of days ago* about the UNBELIEVABLE amount of time people are currently waiting for an ADHD assessment and subsequent diagnosis. At the time of writing, in England, people are waiting 8 years…that’s right, not 8 months, 8 YEARS. I’d really like to put a link to the above mentioned piece here, but iPlayer only makes recordings available until midnight on the day of broadcast. There is a separate, written report here.

Shocking (understatement) waiting time aside, I wanted to address something that was said by the young woman who sat on the red sofa (if you know, you know) and relayed her experiences of languishing in the education, and then mental health, systems. Specifically, she blamed this time for what she considered to be “wasted potential”.

Now, I languished in the same systems (almost continuously) with incorrect, after incorrect, after incorrect, diagnosis, until someone finally agreed to consider the fact that I was born autistic. That’s right, I was born this way. So, for the first 38 years of my life, I floundered in the school system, and then I floundered at university, and then I (very literally) nearly died trying to keep a lid on things, pretend everything was ok, and go to work in a very average job every day for 6 years. Not to be outdone by educational and societal pressures, I then entered the mental health system, where I floundered (and very nearly died again, multiple times) for a further 11 years. Again, all of this because I was born this way. Imagine if someone had picked up on that fact…I don’t know, when I was making a shitty job of navigating high school, maybe? What might my life have been like? I wonder this EVERY SINGLE DAY. People tell me not to waste time on regret, that it doesn’t change anything. They’re right of course, but they haven’t had their lives destroyed by a broken system…I have.

Fast forward to now, only two and a half years (not a long time, in the scheme of things) post-diagnosis. Admittedly, I’m still under the remit of the Community Mental Health Team and I don’t see that changing any time soon, but I’m also bordering on being a semi-functioning, semi-productive, member of society. It has taken a lot of work, and a lot of help from some key players (whom I will talk about in a separate post), but I think I’m winning at this game called life. In the course of completing a semester of my MSc, I have somehow come across the most amazing support system (who are neither related to me, nor pathologise me). For the first time in my life, I’ve gone outside of my house and met people who see more than a freak, more than a slightly odd human who serves little more purpose than to steal oxygen from other humans, more than a sick, struggling, frail little person, battling with life and who can only be managed with lots of medication and (metaphorical) bubble wrap.

My course advisor has said (not to me) that she’s never met someone so capable with so little self-esteem and confidence…I think that pretty much sums up what 38 years of undiagnosed autism does to a person. I’ve finally met people who look at me and see ‘wasted potential’, and who want to see me turn that around (maybe they can also advise me how to give up my apparent addiction to both commas, and parentheses (neither of which I’m certain I’m using correctly))…

…it’s ok, you can laugh (or smile, even) at my hilarious jibes, made (as always) at my own expense.