It is not my intention that this blog should be about me, so I have to crave my readers' indulgence for this exception. I believe that it may be of wider application. It has been well said that if you know somebody with Aspergers you know that person, not Aspergers. This reflects the fact that Aspergers is a multi-dimensional condition which affects those who live with it in radically differing ways. Therefore, I cannot pretend that I am speaking for anybody other than myself. There may well be others with the same diagnosis who have experienced the loss of their accustomed routines as completely devastating ; or those who were already economically and socially marginalised (most of those with AS) may well have become even more so. However, the voices of those from the 'neurodiverse' community (or indeed those with any disabilities, 'hidden' or otherwise) are rarely heard, so this post may be of some value.
The article which crystallised my thoughts on this subject was by the doctor and broadcaster Farrah Jarral, entitled: 'Why lockdown can be good for mental health', published in 'The Guardian' on April 30th. Although the article refers to people coping with OCD and anxiety disorder, and not specifically to autism, its observations are very relevant to those with Aspergers/autism. Jarral quotes a counsellor, who had noted the phenomenon of 'lockdown relief' among those with high levels of internal pressure: ' "People who are driven by keeping up appearances, productivity, showing up to everything, achieving lots, being visible and being there for everyone have found themselves chilling out, landing in a sense of relief at not having to perform any more...their relationship to themselves is much more authentic and organic as a result of not having an audience." '
As a person with Aspergers (who 'came out' as having Aspergers when I was diagnosed five years ago) I can echo these observations. I have found the temporary absence of neurotypical social interactions, of sensory overload, and, above all, of the necessity of having to 'camouflage' my autistic traits, as a tremendous relief. My anxiety concerns re-entry into 'normal' working life. Everybody with Aspergers who has accomplished some degree of integration into the neurotypical world has had to 'camouflage', 'mask', or conceal their autistic characteristics. We don't have any choice, because the neurotypical world offers us a life worth living only on its terms. I can attest to the fact that the task of adjusting to the neurotypical world's expectations, day in, day out, is extremely stressful and fatiguing. One is constantly aware that the performance may one day fail, the mask will slip, and a'meltdown' will ensue. I say this not with the purpose of eliciting pity, or sympathy, but in the not unjustified hope that understanding those different from us will help to make the world more at peace with itself, and will make our interactions with others more harmonious.
Uta Frith, the cognitive psychologist, who has done so much pioneering research into autism and Asperger Syndrome, and who has done so much to publicise it for a non-expert audience, put it well almost thirty years ago:
'It is possible for the Asperger person to learn social routines so well that he or she may strike others as merely eccentric. They would not consider that there was anything wrong with them. Of course, such hard-won adaptation is achieved only at a price. The Asperger person will have had to learn with great effort what others absorb quite naturally. He or she will need an unstinting degree of help and a high degree of motivation. Unfortunately, achievements bought at high cost are often fragile, and he or she will have to run where others stand still. The question arises whether such gains are worth the high price. One has to acknowledge that not all Asperger syndrome individuals can achieve social integration for all their strenuous efforts.' (Uta Frith (ed.) 'Autism and Asperger syndrome.' (1991). page 22.)
I can endorse every word of this. I feel strongly that, at least as far as I am concerned, the question which she poses in the penultimate sentence will always remain unanswered. There are some problems about the relationship of oneself to others which ares so complex that it is in their very nature that they will always be questions. I have to live with this, and in this, ambivalence. Professor Frith goes on to say: 'There is no getting round the fact that that autism is a handicap. Even the best-adjusted individual with Asperger syndrome has more than the usual share of problems.' Although there are many among those who endorse 'Asperger Pride' who would cavil with this description of AS as a handicap, or disability, in my experience it is indeed such, considered both from a medical and a social perspective.
To return to Farrah Jarral's article: 'We have a precious opportunity to think about the ways in which "normal" life can make people anxious and ill.' I cannot help thinking that people with autism are not alone in thinking that the deranged organisation of society, and the insatiable, inhuman demands which it exacts from so many people. are unsustainable.