I struggle quite badly with my autism. On a surface level, this is not automatically apparent because I can camouflage my difficulty through appearing calm and socially acceptable. In structured one to one settings, I can put on a good social front. Yet my understanding of relationships, how to relate to others on an emotional level, is virtually non existent. I really struggle to navigate the world outside of my very tight routines and self imposed schedules. I get so irritated about this because I want to be productive, to achieve, and I resent the fact I can’t work. Even voluntary work can be a struggle at times, although I try and seek it out in moments of energy. A lot of the time, though, I procrastinate. The effort involved in just filling out a volunteer application form is too much, too onerous, when I’d rather read or follow my usual habitual routines. I get stuck in my ways, as I’m very rigid. My brain finds it excruciatingly difficult to concentrate on anything outside of my interests or source of motivation at a particular time, which is nearly always a narrow suite of activities : cooking, reading, writing up recipes.
I have just one friend, who I hardly ever see, and no one other than my family and closest support networks to help me in times of need. I can’t navigate unstructured social encounters because it hurts my brain to do all the expected social moves, and I have little social motivation outside of my established support or interest networks.
I have achieved a University degree, over 10 years ago, and I have no idea how I managed that. But I was less tired back then, I had less to think about, as my parents cooked for me, washed my clothes, organised my files etc, and I spent all day every day holed up in my bedroom, in my bed, studying intensively for hours at a time, complete mono focus on my area of study, History. I was fresh out of school and the routine was not too dissimilar to being in 6th form. The University was a 20 minute walk from my house, as I could not handle halls. My life is quite different now, and as a fully fledged adult, I have far more activities I have to perform, because my parents no longer cook for me or wash my clothes. These activities consume a lot of thinking space, although cooking is also an area of total obsession and interest. But it means I have very little mental space for anything outside of my routines.
My sensory issue around noise has increased with age, and in general I feel a lot more over stimulated and on edge than I did ten years ago. Alternatively I am just more aware of my sensory issues than I was back then, as I’ve always been easily distracted by external noise, but used to not dwell on it so much. With awareness comes fear, and my sensitivity has turned into an anticipatory phobia. I worry about noise even when it’s quiet, because I am more aware now of how much noise affects my ability to concentrate on tasks.
I have also become more aware of how severely autism affects my life. I cannot relate to people who supposedly have autism yet are married with children, have full working lives and are not really that disabled. Part of this might be to do with my own inability to understand other perspectives. I have not moved out of the egocentric stage of reverting everything back to myself. I wish I could understand it more, as it would resolve a lot of anxiety, but I don’t get how I have the same condition as someone who can achieve things that I find so impossible. I also, though, genuinely think that autism is not one condition, and they need to separate disabling autism from non disabling autism. It affects my self esteem quite negatively to read and hear about people with autism who have achieved the trappings of normal life, and are well integrated into their communities.
It is possible that autism is also now being over diagnosed. On the one hand, it’s good that people are being understood and supported, and over diagnosis is better than intolerance and a denial of difficulty. Yet severe disability caused by the autistic syndrome is, and always will be, rarer than the milder shadow autistic syndromes that blend into normality. The latter may well cause real difficulty and stress, but if someone can integrate into society, it means their brain is less severely impacted on an executive level at least than someone who can’t, or can only do so with a lot of support. Being able to form deep relationships presupposes social motivation and drive, as well as at least some ability to reciprocate long enough to make the thing work. It requires putting yourself second, something that many more impacted autistics cannot manage. The more impacted autistics are being left behind because of a sea of super able identity first autistics, who lead practically normal lives, with kids, relationships, and/or jobs. I am not at all denying their struggles and disability, but there is disability and then there is Disability, and the latter entails not even being able to develop a friendship beyond an egocentric kid level. Autistics with greater impairment are being drowned out, not helped by speculations about people being a bit autistic, despite having very successful lives. Some balance is needed. Diagnosis needs greater refinement. Autism is not one condition, it’s a family resemblance condition. The conditions might share surface similarities and traits, but have massively different outcomes and degrees of integration and type of brain impairment.
We currently have a one size fits all diagnosis that is dominated by the most able ”Asperger’s” type autistics, many of whom are just slightly eccentric geeks, who blend into normality. Mental health problems among this population are profound, as even very mild social impediments can cause difficulty. But this is not quite the same condition as the one that makes someone a virtual recluse, with the egocentricity of a child, and very limited ability to access the outside world.