Tag Archives: neurodivergence

The language of mental illness

I notice that I feel more comfortable writing ‘mental health problems’ than ‘mental illness’ because the second option seems so much more loaded. The words we use to talk about mental illness are problematic, too. Anxiety and depression are words that really don’t convey the life destroying nature of being overwhelmed by those things.

Years ago, a doctor gave me a questionnaire that talked about being anxious and fearful. I wasn’t those things – I was overwhelmed by terror on a daily basis and unable to function as a consequence and I could not express the severity of my situation in the terms the survey offered. I was then given a CBT handbook to help me manage those small fears that will go away if only you push back against them. Only I was terrified, all the time, thanks to the genuinely threatening things that were going on in my life.

Depression, as a term does not convey the state of being so weighted down that you no longer know how to move. It does not express the experience of being so numb that you no longer seem like a proper person on the inside. Depression does not convey the utter despair and hopelessness that sometimes kills people. Talking about the fatigue that comes with depression does not express what it’s like to be so overwhelmed that even the idea of trying to do something is unbearably exhausting. 

‘Triggering’ is a word that has been sorely abused by people deliberately minimising how trauma impacts on people. Triggering as a word is not adequate to express the horror and loss of control of finding that your mind has been thrown back into reliving traumatic experiences from your history. The word ‘trauma’ alone does not do enough to convey to untraumatised people what that kind of experience this means. And I don’t want to expand on that because not triggering the traumatised folk is a consideration alongside wanting to educate those who don’t really get it.

‘Personality disorder’ is an awful term that has stigma hard wired into it. It’s also a really problematic area of diagnosis – it’s just a label, it doesn’t represent anything that can be measured. How do you tell between these ‘disorders’ and perfectly reasonable trauma responses? How do you tell between trauma in undiagnosed neurodivergent adults, and ‘personality disorders’? This is an area where the problematic language represents a lot of problematic thinking. If this isn’t familiar territory, have a look at the ‘symptoms’ for schizophrenia https://www.nhs.uk/mental-health/conditions/schizophrenia/symptoms/ and consider how many of those might be caused by trauma and by real threats that are assumed not to exist. What happens to an abused teen whose parents frame their behaviour as delusional? 

Often, the official language to describe conditions comes from an unaffected observer, not the people having the experience. This isn’t a neutral process, and the stigma against mental illness and neurodivergence is massive and longstanding. And please, if we’re going to label murderers as being mentally ill, could we at least have a specific label for that illness rather than making it seem like mentally ill people are dangerous to those around them. We’re not. Most of us are far more likely to harm ourselves than anyone else.

Contemplating Brains

For various reasons, I’ve spent a lot of time in recent months looking for information about both neurodivergence and personality disorders. I minored in psychology back in the day and have remained interested in brain stuff ever since.

There are a lot of conditions that are defined by symptoms. When it comes to brain stuff and personality stuff this means as an adult, self reporting to someone who will then make a subjective assessment of how you’ve presented yourself. It’s not like looking at a broken bone, or how much insulin you produce. Given the way in which neurodivergent people tend to be traumatised, and how so-called personality disorders look a lot like pathologizing trauma responses, there’s a lot here that worries me.

I note with concern that diagnosis often has everything to do with how much of a nuisance you are to other people. Kids who act out at school are more likely to get checked out. Quiet but miserable kids may go unnoticed. I know historically that working class kids were less likely to be identified as dyslexic and more likely to be labelled as ‘thick’ and ignored. Girls who are shy and socially awkward but polite are more acceptable than boys having similar problems. Girls are socialised hard to be nice, in a way boys aren’t, all of which no doubt has a big impact on who gets diagnosed with autism. Boys underperforming with ADHD often get taken a lot more seriously than their female counterparts who get labelled as chatterboxes or as ditzy daydreamers. There’s a lot of sexism and classism tangled up in diagnosis, and more so in the past.

If you are a problem to your workplace, you might get an adult diagnosis. Otherwise it seems to be prohibitively difficult for a lot of people. There seems to be a general feeling that people who are high functioning and have viable workarounds don’t really need help. Be that with mental health or neurodivergence. These issues aren’t approached based on your suffering, it’s far more about the inconvenience you might cause to those around you. I think to some degree this is informed by lack of resources. There’s certainly not much support available for many people who are struggling.

We don’t actually get taught much about how our minds work. It would be useful if more people better understood what might be going on with other people’s heads, and their own. Education is always a good choice for reducing stigma and being more inclusive. Children who stand out as different may get help learning how to fit in, but why aren’t we teaching everyone how to better accommodate difference in the first place?

There’s so much more to quality of life than whether we can fit in at school and function in a workplace. I think there’s a lot of distortion created by how those aspects of life are prioritised. I wonder what different kinds of approaches to brains and health might be possible if we were willing to be a bit more thoughtful about it all.

Access and Anxiety

Anxiety and some kinds of neurodivergence can make the uncertainty inherent in an event a real barrier to participation. These sorts of issues can be easily overlooked and can result in excluding people who could have participated with the right support. Accessibility isn’t just about whether a person can physically get into the space, barriers are not just about bodies.

I’m no great expert on neurodivergence. My understanding is that unfamiliar things, changes to routines, and other kinds of uncertainty can be immensely stressful for some neurodivergent people. Knowing things in advance so as to be able to feel prepared can make a great deal of odds and reduces anxiety.

I do know a fair bit about anxiety. Given an empty space, the anxious brain will just go ahead and plug in disasters. The more you know, the less room there is to unleash the panic weasels, and the more manageable the situation becomes.

What kind of thing a person needs to know about is probably going to be quite variable. Based on what I’ve seen around event organising, the most important thing is not to be complacent around requests for information. Don’t assume people are being unreasonable or demanding if they need to know about something ahead of time. Also, they probably aren’t going to tell you if they have sensitivity issues caused by autism, or a hard time imagining unfamiliar things, or are checking to avoid trauma triggers, or need to stop their brain from coming up with a hundred potential disasters.

If you don’t know exactly how something is going to work, tell people what you do know – try and work out what the limits are. Consider asking if there’s any kind of information they need. Make it ok for people to step out if something turns out to be too much for them. Actively support people whose psychological needs are different from your own and don’t expect everyone to be the same.

It shouldn’t matter why people are asking for information and help – in that we should not have to be persuaded they have a specific need in order to act on requests like these.