Is it any wonder that only 32% of autistic adults are in paid work compared with 80% of the non-disabled population and 47% of the disabled population? There are obvious barriers, like the fact that social communication is an essential skill regardless of your job role. People who can’t play office politics are automatically on the backfoot.
Then there are more simple things. Like the lack of understanding. Or even more than lack of understanding, the refusal to listen. The dismissive attitude. The problem with “everyone is on the spectrum somewhere” is that it justifies this ignorance. One of the best analogies I have heard is that autism is a different operating system. Autistic people are Apple Macs, neurotypical or non-autistic people are PCs. Most of what you can do on a PC, you can do on an Apple Mac, but sometimes the way you go about it is different. You often need to download operating specific versions of programs or apps; a PC version won’t work on an Apple Mac and vice versa. There are some things that PCs are better for than Apple Macs and some things that Apple Macs are better for than PCs. If you’re used to a PC, you might find an Apple Mac hard to navigate. Expecting an autistic person to process things the same way as a neurotypical person is like expecting a PC program to work perfectly on an Apple Mac. It’s not going to happen.
Let’s extend the analogy and imagine that all the processes that go into day to day life are programs on your operating system. Some are functional programs like ‘sociability’ and some are stressor programs. For example: I am a student nurse. I have been on placement on a ward with no central air conditioning, the ancient ineffectual unit and many fans do little more than blow hot air around. The ward is incredibly hot, sticky and close. Imagine that ‘it’s hot’ is a simulation everyone is running. For most people (PCs), ‘it’s hot’ is processed into feeling uncomfortable and more irritable, but it doesn’t have a huge effect on their processing power and they can run their other programs as normal. For me ‘it’s hot’ is processed into feeling claustrophobic, dizzy and uses so much processing power that my other programs start to glitch. I recognise when I am glitching and there are a few tools I can use: I can take rescue remedy, I can drink water, I can take myself away for a few minutes and breathe, I can take some pressure off by reducing some of the other programs I am running and if it gets too much I can remove myself from the situation.
The problem is that PCs attitude is we are all experiencing ‘it’s hot’ and everyone else has to deal with it, therefore I should too. Even though my experience of ‘it’s hot’ is different to their experience of ‘it’s hot’. This is what I was told when I requested to leave because I felt that ‘it’s hot’ was affecting my processing powers to the point that my other programs were glitching too badly to function. As a result, I pushed myself to lower the power on some of the glitchy programs, I was less sociable, and I volunteered for less in order to continue to function while ‘it’s hot’ was running. This was manageable until other power draining programs came online too. At this point, I was in a difficult position, because I knew I was glitching, but I also knew that if I asked to leave, that would be considered unprofessional. I took breaks. I shut myself in the toilet and sent out SOS messages to friends to try to pull myself through. I ultimately decided I still needed to leave because the glitching wasn’t improving despite my best efforts. As I was going to have that conversation, I was asked to do something. I foolishly thought I could hold of any major glitches until after I had completed the task, having already been pulled up on not doing things when I was asked to. If I had been allowed to carry out the task without interruption, I might have. Unfortunately, I was interrupted by a PC correcting me on a petty thing, which triggered a major glitch.
A glitch is a reasonable analogy for a meltdown. When a computer has a glitch, it freezes or shows a blank screen or flashes lines of colour. When I have a meltdown, my rational self freezes and no amount of clicking is going to bring it back until it’s had a chance to switch itself off and back on again. When I have a meltdown, I am not in control. In this particular incidence, I said I was going home and proceeded to leave. My patient was safe, the PC nurse was with her. I didn’t swear, but I do appreciate it was unprofessional. Hence why, if it had been acceptable, I would have left earlier or not gone in at all.
What has now happened is I have probably failed placement and I will probably be suspended from my course. Because all people see is the major glitch and the major glitch counteracts every good quality I have because it is dramatic. Nobody wants a perfectly useful Apple Mac that will suddenly show the blue screen of death without warning. My mind has the processing power that its got. There are some environmental influences that can take the pressure off and free up more space, like an external hard drive for an Apple Mac, but ultimately once the limit has been reached, my mind will glitch.
Glitching is not going to go away, as much as I wish it would. Therefore, it becomes a matter of working with the processing space I have to avoid glitches. It’s worth keeping a perfectly useful Apple Mac which you know glitches when it has 6 applications open at once, because you know you can run fewer than 6 applications and avoid glitching. I would make a perfectly good nurse and with the right adjustments, I won’t glitch. I don’t expect neurotypical people to know what is an isn’t going to make my mind glitch. What I would like is to be listened to and respected when I tell them. At the moment all I get whenever I ask for an adjustment to be made or to leave early because I can feel myself about to glitch is ‘how will you cope when you qualify?’. Then when my mind glitches: ‘your mind glitches and that is unacceptable. You must stop your mind from glitching.’ But equally ‘everyone else is running all these programs without their minds glitching, I realise your operating system is different, but we are all different makes of laptop (even though we use the same operating system) and everyone else manages so you should too.’
As a student, I have no control over where my placements are. When I am qualified, I will choose a job in which the environment maximises my storage space. The more storage space I have, the greater capacity I will have for dealing with stressor programs. However, as a student, the environment is entirely outside of my control, so I have much less control over outside influences on my storage space. That means even if I do as many things as I can to maximise my storage space, it is still going to be more limited by the environment that I am in. Therefore, adjustments are more necessary to prevent mind glitches than they will be when I am qualified.
I don’t expect neurotypical people to understand how my mind works. I expect them to accept that I do understand how it works and to respect my needs without judgement.