Cast down your bucket
I’ve tended to find dealing with professionals exasperating and gruelling due to assumptions that I’m either lying about my autism or exaggerating the issues I deal with day to day.
This leads to me not being given the benefit of the doubt and therefore professionals often come to the conclusion that either I’m exaggerating my struggles or flat out lying, all due to how I superficially present myself.
Thinking back, the most vivid memory I have comes from a GP telling me in no uncertain terms “you don’t look like you have anything wrong with you” during an appointment where I needed a form filled in for extra assignment time. Also family members stating that I “have to try” or that I “must make the effort” after already working on my own blog, going to job fairs, working with specialists who help Autistic people get into work (and in searching for new places being referred back to them). And even on a Level 1 online course on Understanding Autism itself, that course was suggested to me both to add something to my CV to show what I’ve been doing while out of work but also to understand my own condition better.
As well meaning as a statement like this is, it only serves as a cold comfort. One that’s made all the more aggravating when it seems that the ONLY advice anybody wants to share with me is self help.
A sports stadium is not exactly an ideal place for a first job, but it was mine all the same, as that’s where I was hired. If they made any concessions or adjustments to the kiosk where I was stationed, it never felt like there were. I only worked on match days but in the 2 years I spent working there, every day ended with me feeling completely exhausted and barely able to move my body. It wasn’t just that I was experiencing sensory overload due to how loud the crowd could get, or that there was an expectation that the food was prepared and set out in a presentable way before fans came into buy anything, or that due to poor initial training on using the till meant that the speed at which I did worked was often slow. It was all of these things combined. Couple that with the fact that if they were aware of me being Autistic it certainly didn’t come across that way – it often led me to mask in certain social situations in order to get through the hectic-ness of half time but also in response to some of the abuse that supporters would dish out at staff.
But it’s affected me heavily in the long run, pushing my faculties to an extreme degree in order to meet others’ standards. However, what I got out of doing that much work didn’t reflect the effort. The praises felt empty knowing that there are others out there who are living with conditions, family and/or medical, that are more severe than mine, who have obligations to deal with that they can’t back out of, and in some instances, who don’t even know that they have a disability but blame themselves for not accomplishing anything. I understand this on a fundamental level because I was there myself and I blamed myself a lot for feeling like I wasn’t taking enough responsibility for things, and it would be so wrong to tell other people “if I can do it why can’t you do it?”.
I think back to how often I was told that I needed to learn how to “play the game” because otherwise it would leave a negative impression on potential coworkers, who may come away thinking “ugh don’t want to work with him”. This includes statements like “try to smile more”, “make your voice sound more upbeat on the phone”. Plus the fact that much of my volunteering experience was in libraries, a charity shop and music venues, and rooted in the belief that I needed to work on my “people skills”. On recollection, and especially when I was working at my first sports stadium job (which I loathed), I question whether Ireally needed to develop those skills just because of me being autistic – because there were people who did enjoy working with me “nah my man’s safe, he doesn’t like it here, but he’ll do the job all the same”.
There are organisations that do put in the work for autistics, such as: Autism Voice UK, Neurodiverse Connection and The Ties that Bind project, but the fact that my knowledge is so limited highlights a very serious issue. Not just in terms of needing more of these groups, but understanding why there aren’t more, and why this information isn’t more widespread.
It’s also valuable because the general perception of Autism is a White European middle class one, often centred on children where despite obstacles, families can provide. For those from African Caribbean backgrounds it feels are like the conditions they live with are invisible – the conclusions made about their issues tend to be misdiagnosed as behavioural or cultural ones, to suggest otherwise is “making excuses” and that discipline, and coming down harshly on those individuals, is the solution. Some of that comes about from being on the defence from the day to day pressures and bigotry that hits you from all sides every day just to make it to the end of the week – and in the most extreme instances people will go as far as to resort to praying it away, abandonment or keeping indoors.
Even in this barren desert of disappointment, I’ve managed to find an oasis or two of positive things to talk about. Perhaps the most important of them being the process of learning that I don’t need to fit into anything and to embrace the grey area I fall in – the grey area that is of being a Black British (African Caribbean) person with more than one invisible mental condition and also not having a public social niche (goths, punks, ravers etc) of my own as well. The chagrin from those attempts at integration is what led to me distancing myself from others, more as a benefit to prevent me getting more bitter, and affecting relationships, but also even though it led to me being more isolated – as an only child I had already learned to appreciate my own company.
There’s real strength from that, but it doesn’t get talked about a lot, so I try to advocate to others who find that they can’t integrate or totally separate themselves. I’ve finally managed to obtain something resembling a safety network – it’s not fully formed but compared to what I had in the past it is a large improvement and I’m deeply grateful for all the people involved who’ve been in my corner so I can at least feel to some degree that I don’t have to carry everything by myself any more.
As human beings we are not as “individual” as some people might lead you to believe. Those same people are often the ones who tend to state that there’s no semblance of community anymore and people only care about their own self gains. But what a broad statement like this ignores that however small one community might be there are people who need others like support workers, mentors and activists even more than a neurotypical person might. Those people work in fields that tend to have large worker turnover and usually are the first ones and the hardest hit by cuts and other executive decisions. They deserve to be commended as well as given their own support as much as their clients.
Odai Quaye
November 2024
