This is a tricky topic to write about, because from my autistic viewpoint I cannot see what my nearest and dearest can see, so I am relying a lot on feedback from my wife for these comments. People often remark on how young I look, given that I am 65 this year. I’ve heard it said quite often that autistic people tend to look younger than they actually are. I don’t know if that is really true, but what I can say is that time passes at the same rate for everybody.
My experience of autism has been all about fitting into the neurotypical world as best I can. I’ve found a job in academia which I can do well (I couldn’t do anything else, I think) and I go to work vigorously, whether travelling to campus or working from home. I have routines which I follow relentlessly every day. These routines drive me forwards. I walk briskly. I work in bursts of highly focussed energy, usually petering out by early evening as the spoons run dry. I achieve a lot: teaching, books, articles, papers, compositions, consultancies, advocacy, strategic initiatives, administration, leadership, committees, etc. The list goes on. I joke that I am semi-retired and part-time, but that is meaningless because “the university” requires me to do a full time job. That is only partly true. The full truth is that, even if the university did not make such demands on me, I would still work to the same level. That is the internal drive created by my autism. It’s what gets me up in the mornings.*
For the benefit of neurotypical people reading this, I should try to explain that this is quite different to just being hardworking or ambitious. Even on days off (e.g. Sundays) I will construct a routine to fill my diary. An empty diary page may induce anxiety, even panic. My self-imposed schedule is really a form of stimming, designed to calm me and give structure to my existence. The world is such a challenging place, that this provides a sense of purposeful forward motion. It’s almost like aesthetics: what Kant called “purposiveness without purpose”. The mind’s absorption into this activity is the highly focussed state that people call “flow”. In other words, I can make my daily life an autistic “special interest”.
But a problem is emerging. There is a certain reality that is now overtaking me, to do with changes in my body. As bits of it stop working properly (the process really started in 2009 when I was diagnosed with Ménière’s) I can understand that this is just the natural aging process at work. I simply do not have the energy that I used to have. The problem is that adjusting to this new reality involves changes in routines.
My autistic brain will make no allowances for these changes. I know that it should, but I just cannot make it cooperate. So I continue to drive forwards as though there has been no change. This drive fills both my waking and, as far as I can tell, my sleeping hours too. There is no let-up in the need to structure and organise things. I’m afraid it is quite a cliché: the autistic urge to hyper-systematise everything. I do not know how to be any different to the way I have always been.
My body is an inconvenient necessity that challenges me every day. My mind, on the other hand, continues to seek and learn, delighting in everything it discovers and creates. I am told there is danger in this scenario. My alexithymia** makes it difficult for me to know what I am feeling, and my interoceptive differences*** mean I cannot always tell what is going on internally. It seems there is a potential collision course emerging between my physical need to slow down and my mental need to keep going.
* I have had some periods in my life when the above was not true and I fell into lassitude. Looking back on those times - many decades ago - it is really a miracle that I survived at all. I became very poor and aimless. Even suicide was thought about. So, the present version is much more sustainable.
** Alexithymia is the inability to identify one’s own emotions.
*** Interoception is the ability to perceive what is happening inside one’s body. Many autistic people, myself included, experience difficulties with this sense.