“Asperger’s is no joke. It’s autism. We may be smart and look normal but deep down inside we want to scream because no one understands us.”
I came across this statement from someone over on the Asperger's page. It has received around 500 likes and loves and counting. I found it sad that it struck so deep a chord among folk. I know this feeling only too well. I've been in that place, when it felt that not only did no-one understand, no-one cared enough to understand. Many pretend to, and then carry on as normal, clearly not understanding that the normal is the very thing I don't do well. For instance, this past year, I tell someone that I don't like using the telephone, I explain that it puts me on edge, I see them agree and sympathize. And then I find them telephoning me incessantly! And much worse besides. It seems minor, to those adjusted to the 'normal.' To those for whom nearly everything is uncertain, and who crave certainty, trying desperately hard to find order and regularity among the chaos, this kind of thing is an irritation that escalates. Of course, you lose your temper, and then get the reputation for being awkward and ill-tempered. The truth is that you are actually the most patient person of all, having constantly to control yourself in face of the complete insensitivity of others. The remarkable thing is how few the occasions are that AS people do actually scream. You learn to expect the worst from uncomprehending people and resign yourself to their cluelessness. You expect the worst because the worst is the norm.
Being ‘awkward’ and protective of yourself is part of a fight for sanity and survival. I still find this incomprehension on the part of others. Most don’t mean anything by it, they simply don’t see the problem. In the main, they don’t really care. It’s too complicated for them and not their concern. I have ended up with a number of health conditions as a result of trying to accommodate people. I am no longer so obliging. They either 'get it,' or I pull clear of them. I have to. I can’t afford to worry about what others think, not least because others tend to give the issue zero thought themselves. Their presence can be lethal, generating a chronic anxiety that leads to problems that are detrimental to health. I have developed some very indirect and roundabout ways to achieve certain necessary ends when it comes to living a ‘normal’ life. A school friend once joked that I have the knack of "getting all the right results all the wrong ways." That was back in 1984. That’s how I just about managed to survive and, here and there, succeed in various limited ways. My friend’s comment was funny, but only in a superficial sense. The meaning cut to depths that the comics don’t see. What people never saw was the immense effort it took on my part to get those results. ‘It’s the same for everyone,’ I am told; ‘everyone has to work hard for what they get.’ There’s no arguing.
I still have most of my university notes here. Despite having a superb memory, I would write copious notes, colour code them line by line, write summary headings down the margins, and then headings across the top indicating the contents on the other side. In tutorials and seminars I would arrange these sheets of A4 paper in front of me like cards, with the margins and headings showing at the top and on the left. I had created my own mini-Google in front of me, just needing to have a vague idea where all the information was, searching for the key words at key points in the Inquisition. Whatever the subject, the point, the question, I had the answer in front of me. It was an entirely mechanical process. Instead of relying upon instinct, intelligence, memory and normal communication to interact normally with people, I would search my papers and read from them like a robot. Imagine how exhausting it was to proceed on that basis. Imagine how many hours I spent writing notes from books and articles, then colour coding and headlining them. Then the stress of anticipating questions and interacting with others. Under stress – and all social situations are stressful – my fantastic memory would freeze. Hence I armed myself with a battery of written notes. I dominated classes, took them over, and could speak for twenty, even thirty minutes in the hour. Part of that was to avoid being put on the spot with a question. Tutors learned not to ask me a question, lest I took it as an invitation to take over and run down the clock.
It is a survival strategy, a way of coping with the unpredictable. People won't understand that in the main, except externally. They will be able to see what it was I was doing, but they won’t be remotely understanding. They will simply say put the notes down and communicate and interact normally. They do not see that that is the very thing that AS people struggle to do. Such people may claim to understand and may express sympathy, but it is all in the abstract; the test comes in the practice, and very many flunk it. In my experience, that is the overwhelming majority of people; they make zero changes in behaviour. And why should they? They are the normal ones doing things the right way. It saps the energy and takes time to learn otherwise, and the other in this instance is abnormal, so why make the effort?
I don't feel the need to explain or justify myself anymore. I spent decades doing it, and it only makes you appear even more awkward, more precious, and more obstructive. Absolutely no one finds the scream ‘no one understands’ me remotely appealing. I always tended to see it as an attempt to bully a free pass. I remember quoting Rousseau (from Horace), to the effect that ‘Here I am a barbarian, because men understand me not.’ (A Discourse on the Moral Effects of the Arts and Sciences). Here, Rousseau sets himself up as the outsider, the free-thinker who has seen through conventional norms, values, and beliefs, and who is therefore misunderstood by those socialised to corrupt society. Rousseau is one of the malcontents.
I remember quoting this in conversation. I was met with silence and odd looks. It’s not obvious what to say to that. All that I had succeeded in doing was in identifying myself as a malcontent who others fail to understand. This whole thing can become a self-perpetuating persona, turning others away.
For a number of reasons there is mutual incomprehension. It’s hardly fair to blame others. It is only very recently that I have been able to understand my own behaviour over the years.
But the sad fact remains that people are, in the main, uncomprehending. And I no longer waste time and energy in the effort of trying to make them understand. I have learned that such people rarely do understand, because they don't want to and don't feel the need to. It’s your problem. You are on your own. I’ve always known it. One of my favourite songs is the traditional gospel folk, You Got To Walk That Lonesome Valley.
You gotta walk that lonesome valley,
You gotta walk it by yourself,
Nobody here can walk it for you,
You gotta walk it by yourself.
I don’t need to be told that. I learned very early on that nobody will walk that valley for you.
I have a book on AS in which the author quotes Jesus to the effect that "the truth will set you free." But, I ask, will it set others free? Because if it doesn't, then you are still left trying to control your relations to others and to the world as best you can. I made the attempt to try and explain the situation to someone, and was met with a well-meaning and perfectly uncomprehending lecture on how AS is not a disability and how there are other ways of achieving. The person delivering this lecture had no awareness whatsoever that every example of alternate ways of attaining goals involved other people making the necessary changes to be so accommodating. That may work in controlled environments, in schools or such like. But come out into society. I have asked about adapted jobs and met with zero response. Workers who are much less high maintenance can be found easily, so why make the changes? Imagine being told that AS is a positive thing since there are alternate ways of doing things. Imagine, if you can, at the extremes of your understanding, the inner scream I had to suppress lest I appear entirely rude and unreasonable. Imagine for a second my real thoughts when confronted with people who think they know so much and yet who know next to nothing. I have spent my entire life taking different approaches to goals and tasks that people take for granted. People don’t know, they have no idea.
It can get very frustrating and very annoying, and the stress of always explaining and justifying yourself and being at cross purposes can eventually wear you down. I switch off now. You want to run away to your own safe and silent space. If you can. The burden of others' incomprehension is too heavy to bear and can lead to severe mental and physical illness. They will see it as awkwardness and arrogance. It is a survival strategy on my part.
‘Very tired of dealing with the "normals" and their abusive nature’ someone comments on the Asperger’s page. The ‘normals’ don't see it as abuse, for the very reason that they don't see the problem. They don’t remotely understand it. And dealing with that incomprehension can be a menace to health and well-being.
Speaking for myself, "I exist as I am, that is enough." The locals I see on my rounds appreciate my efforts, and have absolutely no idea of my academic work and writing. I seem to compartmentalize my life very well and have multiple identities. All of which are authentic. Very few know the genuine multiplicity of the whole and wholesome person. The worst part is always having to wear a mask and attempt to live-up to an image that is ‘made up.’ One day, I shall write my own book on living with ASD. I already have the title: ‘Irreducibly Polynomial.’ This is my view of the world from a position outside of it. I see the brokenness and disconnection with clear eyes. I see through the illusions. They come in myriad forms. I have invented and invested in more than a few myself. For the reason that the reality is too wretched in its randomness, indifference, and pointlessness than people know and want to know.
I tend to avoid celebrations of the ‘power’ of neurodiversity and such like. Such romanticisation is pure indulgence and decadence on the part of neurotypicals. There is no superpower here. There are obsessions and special interests, and a lot of time making meaning where otherwise there would be none. It can be a waste of time. But if the liveliest minds of the age are right, and the universe is objectively valueless, purposeless, and meaningless, then nothing really matters in any case. Some have a talent for living, some don’t, and both go the same way and are forgotten. I find the condition of AS to be very creative, weaving patterns and making meanings. God and religion are all ‘made up,’ the great intellects of the age say. So what? What isn’t? Any truth reified through our conceptual apparatuses is ‘made up.’ And if reality as such doesn’t give a damn either way – which the best minds of the age claim – then we are enjoined to be creative and make meanings up. It’s a distortion of nature, critics claim. A nature as bleak and as broken as the one I see is meant to be distorted. I have read autists described as ‘evolution’s casualties.’ I don’t give a damn for a reality that doesn’t give a damn for me.
I rather like what Tim Page has said here:
‘“Social disability” does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness and isolation, little of which was assuaged by Emily Post. Nor, in all modesty, does it address the single-minded, fiercely exclusive energy I can bring to a project that has captured my attention, the immersion in an otherworldly ecstasy that music, writing and film provide, and the very occasional but no less profound joy in my own strangeness.
I do not allow my diagnosis to control my life, and yes, I know that I am probably “high functioning” and not necessarily typical. Still, I have no doubt that Asperger syndrome explains a great deal about my triumphs, as well as my tragedies.’ But it may well be that I am less ‘high functioning’ than a genius in pioneering and living alternate pathways, carving a little living space within a greater reality that I really cannot deal with.
I am very even-tempered – the triumphs and the tragedies seem to balance themselves out. I seek order and regularity, and yet seem to live at extremes. And I do think the mechanarchy of the age to be mad and murderous and am glad to be out of it. You can take your mobile phones and their endless, pointless clack and stuff them up the hole in your culture. You won’t fill it, though. You cannot fill a void.
I’ll just add, at risk of sounding pedantic, but Aspergers is not Autism. They are both included under the umbrella diagnosis, Autism Spectrum Disorder, but Aspergers Disorder and Autism Disorder are not the same and entail different Sensory and Emotional needs.
The World Health Organization (WHO) defined Asperger syndrome (AS) as one of the autism spectrum disorders (ASD) or pervasive developmental disorders (PDD), which are a spectrum of psychological conditions that are characterized by abnormalities of social interaction and communication that pervade the individual's functioning, and by restricted and repetitive interests and behaviour.
And does anyone understand anyone anyway? Are they obliged to? The grass pays no mind either way. If you think it does, you may well come to see my ‘made up’ world as the true and ultimate reality after all.