A couple of months’ posts since I started this blog have already covered some ups and downs. I’ve written about autism and touched on the “side effects” – overload, anxiety and sometimes depression. I’ve written about moving forward; about seeking and finding solutions. In doing so, I’ve learned a bit more about articulating my needs and the things that work for me.
I like to think that one day, people might read this blog and learn. Maybe for some people, it might shed some light into the gaping holes of how autism is portrayed from the neurotypical perspective. Maybe one day it could even give words to people who need them, the way I looked for words in autistic blogs when I first realised who I was.
Words are hard. Using them to articulate my needs is even harder. I remember, almost two years ago now, when I first disclosed to a colleague how much I was struggling. I didn’t know I was autistic: my problem was depression, along with the overwhelming weight of just looking after myself that everyone else seemed to do so easily. I’d just started on antidepressants for SAD, and I felt like a complete failure. Knowing what happened to me every autumn and winter, after planning and researching and doing everything I could to attack the seasons unmedicated, I felt like I was done. I was convinced I would lose half of my life, every year, to this horror of exhaustion and hopelessness. I just didn’t know how to go on. And then I was dumbfounded when this person came back to me later and said: “I am here for you. What do you need? What can I do?”
I had no answer. I didn’t know what I needed. I’d never realised it was even OK to need anything. No one had ever asked me that before.
Since then, I have learned. Coming through that process of medication, CBT, lost inhibitions and the realisation of an overwhelming fear; drowning under the weight of my own true identity and the stigma and misinformation surrounding it; paper-thin coping mechanisms swept from shoddy foundations; my life and self stripped bare, naked and vulnerable. I survived. I learned.
I learned that the difference between “things I need” and “things that make my life easier” is subtle. I learned that there are things I need in order to achieve a certain level of functionality, but which I can survive in the short term without. I learned that the collective absence of many things that make my life easier translates into a need. I can do without some of these things, but I will need others to compensate. I read about spoon theory and spoon distributions and reticulating splines. I learned how to build my life around this unique distribution of needs, and how not to be ashamed of doing so. And in doing so, I stopped surviving and started to live.
But one thing I have not yet learned is how to articulate this to people who do not understand. Most of my followers here are somewhere on the spectrum, or have experience of mental health problems. You can relate, through your own experiences, to that frustration of not being able to control your own responses, or the massive impact of the tiny triggers that transform your life into a hell. Those accusations of over-reaction; that subtle minimisation and dismissal of your needs. You keep reading and you know this, and you understand.
The people I need to reach right now are the people who don’t understand. The people who don’t see that just because it’s not about fitting a wheelchair through a doorway, it’s still an access need. That complication of explaining that yes, each of these single things I can do or do without, with a disproportionate amount of effort – but if you make me face them all, every day, then it is literally impossible for me to get anything else done. Where my gestures of goodwill – “yes, OK, I can cope with this level of stress for a week or two” (cancels all non-essential activities and battens down the hatches) – are taken to mean that my access needs are not a priority. The people who don’t understand that I am used to abusing myself for others’ comfort, and that if I am not literally shaking with fear, I will probably be able to carry the lie that everything is totally fine. “I’m just tired.”
I am sad because I am trying so hard to make these people understand. I am sad because so far, despite months of patient effort, I have failed. And I am sad because of the increasing likelihood that this will damage my life and prospects for years to come.
I need not to wallow, while at the same time not beating myself up for feeling sad. It’s OK to feel sad when this sort of thing is happening. But I still have to get up tomorrow morning and smile as I negotiate. I have to stand up for myself, but oh so patiently. I have to pretend that my needs are not needs, are not urgent. I have to pretend that they are not hurting me. I have to engage on their terms.
This the social model of disability. This is society excluding, for no adequate reason, those whose needs they don’t understand. It’s OK to be sad.