I should like to make a few comments and observations on autism and Asperger’s Syndrome. In June 2019, my doctor asked me to go away and study the information and links on AS she provided to see if they made sense of my own experience. This text contains my observations after a lengthy period of thought with respect to the above. I recorded my thoughts at the time as a matter of first response. The text below is based on my initial conclusions.
Discussing possible connections of the physical illness I was suffering at the time with ‘psycho-social anxiety,’ my doctor tactfully raised the possibility of Aspergers. She did so seemingly in passing, giving me the option to either respond or ignore. When I responded, she moved immediately to the next stage of research. This led me to a self-diagnosis that pointed to a likelihood of ASC on my part that was so clear as to be near certain. As a result of the discussions we had at the beginning of this period, my doctor told me that she would have no hesitation in sending me for referral.
After six months of thought and investigation in conjunction with further discussions with my doctor, I asked my doctor for a referral. This was done without any questioning. I then spent two years waiting before the assessment was undertaken. It was an incredibly frustrating period, endured during Lockdown, because I wanted clarity and certainty. I wanted the removal of doubt, enabling me to progress to the next stage, whatever that entailed. It didn’t take long for the diagnosis to be given. I was never in doubt that I had AS. I feel like I have a doctorate in both the theoretical and the practical. I now count it as another area of expertise on my part.
I’m not sure about the terms to be used; I merely use the terms that are familiar to me. In all honesty I didn’t know what Asperger’s was until my doctor gave me the information and links to investigate and ponder at length. There is controversy over the name ‘Asperger’s’ for a number of reasons, not least the associations of the man who gave his name to the condition with Nazism. The term Asperger’s Syndrome Condition Disorder (ASD) is familiar and people have some understanding of it. At the same time, I see AS as a condition rather than a disorder. If there is a disorder here, then it is one that exists as much in an AS person’s environment and relations to others as it does in his or her character traits. But isn’t that impairment in interrelationship and interaction definitive of the disorder in the condition?
I write of ASC as Autism Spectrum Condition, because this is the term that is contained in my diagnosis and report.
I do not write on AS as an expert by way of professional training and education. I am expert by way of inside knowledge. But I do read the work of these experts and see that much that they write requires qualification and greater nuance. Some know from the inside, some from the outside, and each party has something to learn from the other. I read and I deepen my knowledge and understanding. I have a strong academic background and am grounded in good, sound research methods. So I feel comfortable venturing into a field that is outside of my area of professional expertise.
Comments on Quotes about Autism and Aspergers
I now turn to comments and observations on AS.
unique and different
“If you’ve met one person with autism, you’ve met one person with autism,”
Dr. Stephen Shore.
It is impossible to generalize, so I shall just talk about my subject, which is Elvis. But I should probably talk about myself, which is indeed the favourite subject of a person with AS. How appropriate it is that an autistic person’s ‘special interest’ may well be autism – especially one’s own! This quote is commonly cited in articles on AS. We can take the point, but I think a qualification has to be made. I would caution against assertions of the irreducible uniqueness of human identity and experience. Once we lose the sense of commonality and shared characteristics and traits, we risk plummeting into a world of solipsism and mutual incomprehension. Certainly, each person is to be understood in terms of his or her own unique personhood. Each person is different in different ways. But there is commonality, too, which is precisely why it is possible to define autism as a condition in the first place. Irreducible subjective identity and experience is a dead-end that should be avoided.
The world in a box
“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes.”
Dr. Temple Grandin
I made my own box. It's a safe space. It can also be a prison, cut off from the world and from others. I make my own world through intellect and imagination. It is a well-tempered world which embodies the key principles of 'rational freedom.' I not only address the world in my writing voice, I have created a written world of shape, symmetry, and order.
“He who reverently pursues the Boundless, even though he will never attain it, will himself advance by pushing forward in his pursuit.”
St Hilary
That describes me ‘in my room,’ in my study, my boundless box of infinite goodness. From that little corner of the world I have written more than twenty million words. I am far from having reached my limit. In arguing the need for boundaries, I go far beyond the bounds.
The square peg
“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”
- Paul Collins
It is interesting to attempt to square this realization with my careers officer’s description of me as a "round peg in a square world." That yields a unique variation of squaring the circle, in the form of circling the square. I can certainly see why I could be described as the ultimate square peg. I like to do the same things the same way at the same times, with each day the same as it always has been and, if things were in my power of control, would always be. For those inclined to see such a life as boring, I simply ask them to withhold judgement until they see some of the things I do with such regularity.
I like certainty, predictability, and stability. I don’t like change at all. That said, I don’t remotely see the world that I seem unable to fit as being 'round.' In fact, I see the mad mechanarchy consuming the world as much squarer than I am, all straight lines, inhuman requirements, and restrictions, without oddity, peculiarity, and nuance. Hence my reluctance to fit in and my resistance to being fitted. For all that I may be considered square, the world strikes me as a one-dimensional flatland governed by institutional and systemic imperatives that determine the lives of its captives with irresistible force. The people who are adapted to this iron cage do not strike me as rounded persons, but as being moulded, manipulated, and fitted into place. People may think me as missing something, but to me they are missing much more than I am. People who are so complicit in the techno-urban industrial violation of ethics, society, and ecology are missing the most essential qualities making for health and happiness. They have chosen to accept survival instead of striving for freedom and happiness. In making a priority of social survival, such people readily become complicit in a systemic unravelling of the social and planetary ecology. The problem is that the plenty I may be missing may in many respects refer to precisely those qualities which are driving the self-destruction of civilization. I don’t care for the endless accumulation of material quantity and have made precious little contribution to the expansion of the GNP over the years. That's my negative contribution to the moral and ecological order. Lewis Mumford sardonically commented that the cardinal virtues are now considered sins against the GNP. In which case I am most certainly a saint as against being a sinner. In terms of the modern religion of economic expansion, however, I am the most miserable of sinners. And entirely unrepentant. My soul sings all the merrier for that. I don’t spend much money, I have never driven a car, and live a life that is within my natural reach. For the past decade I did a little job in the neighbourhood which involved meeting local folk, stopping to chat with them, knitting the community together, all the generations, helping people out here and there when called upon to act above and beyond the call of my low-paid duty. I’m ever ready with an amusing story, a joke, a chat, a smile, a pair of ears, whatever serves the purpose of brightening the day. The elderly wait for me behind the door or on the front, give me the odd bag of mints and things. "Marks and Spencers' don't you know", one elderly lady told me every week she gave me a treat. I was sad to learn of her death just as Covid hit. I would see many of my elderly friends go the same way over the years. You see the rhythms of life and death, and you never become adjusted to the shock and the sorrow. Others would wait around for me too. Younger folk are more interested in pranks and frolics, some helping themselves to my trolley, pressing it into service as a sledge taking them on aa jolly ride down the hill. Some people wanted help in moving things, carrying things, knocking a nail in, rescuing cats up a tree (they rescue themselves and leave you wobbling on the ladders), finding pet dogs, and a million other things. I have made myself useful in the community in myriad ways. Never eat and drink alone: do things for others, and they will do things for you. I am always cheery and chatty, and people show their appreciation. I’m very rounded in that sense. But only up to a point. I can't network the same way other people do, and I can't survive extensive encounter. People exhaust me. I can do this on my rounds precisely because I am passing through the streets. Repeated encounter with so many people would quickly tire me. So I have found a way of engaging people through short encounters. But never eating and drinking alone remains good advice for those who can support extensive networks and connections. I can't.
My remoteness from society and the necessary compromises it demands of us to live a successful life has allowed me to preserve a wholeness and wholesomeness that may strike some as innocent and the masters of monetary expansion others as useless. Either way, it marks me out as a misfit. All the same, I remain the urban fox holding on to his brush, and there are very few on the inside of the gilded cage who can say that. That this gilded cage is also an ecology-destroying global heat machine gives me the kind of innocence that has its virtues, in contrast to those who may well be complicit in their compromise. Mark this well, though. I’m not saying that I am better than such folk. On the contrary, it’s the people who put a shift in day in day out that ensures that there is such a thing as a society at all, upon which we all depend. They give up plenty of themselves in order to do this, generating the resources that go to the health and welfare of all. That's no mean achievement and it is too often taken for granted. There are people who think that money is just out there, and think themselves entitled to help themselves to it in furtherance of their political ends. They take plenty for granted. I don’t give up too much of myself. I can't afford to. I would be gone in no time, consumed by the demands of social reproduction. I keep hold of myself. That could be considered as evidence of a certain preciousness on my part. I don’t compromise easily. Which means that I don’t give much of myself, to anything or anyone. That’s actually a lack, leaving me short of my true potential. But I have retained something that society needs, and by the same token, society has something I need for the expansion of being and true fulfilment. Let’s say that there is a need for a mutual interaction in which the parts unfold so as to one day make the world a rounded whole.
“I believe everyone on the planet has their thing and, especially in my experience, autistic people all have a tremendous gift. It’s a matter off inding that gift and nurturing it.”
Edie Brannigan, mom to runner Mikey Brannigan
I agree very much, but note that it applies to everyone. I continue to affirm the unity of the freedom and happiness of each and all.
It’s a square world
“The experience of many of us is not that ‘insistence on sameness’ jumps out unbidden and unwanted and makes our lives hard, but that ‘insistence on sameness’ is actually a way of adapting to a confusing and chaotic environment…”
Dora Raymaker
It is the reality of being so different and being so out-of-kilter with the normal structures and expectations of society that creates and drives an urge to impose order on the world and exercise control over it and over people as well. The insistence on sameness is a way of imposing routine and regularity on an inordinately confusing and often overwhelming world; it is a frame which makes it possible for those easily overwhelmed to navigate their way through a difficult terrain despite their vulnerabilities. The AS person needs to find those accommodations which enable them to adapt to a terrain to which they are ill-suited in so many ways. My concern with order and regularity makes me alert to the attempts to impose certainty on an uncertain world on the part of others, especially in politics. It is not the right way. The urge to control is born of neurosis and can never make for a healthy politics.
The tell-tale eye
“And now I know it is perfectly natural for me not to look at someone when I talk. Those of us with Asperger’s are just not comfortable doing it. In fact, I don’t really understand why it’s considered normal to stare at someone’s eye balls.”
John Elder Robison
On the urban regeneration course I did at Liverpool Hope University I met a Brazilian woman who had the darkest of dark eyes. I think this was one of the few occasions that I ever maintained eye contact with someone. It was impossible to look away once she fixed you in her gaze. That observation merely confirms to me that there is something intimate about eye contact, making such contact appropriate and comfortable only when you are close to that other person.
It doesn’t feel natural to me to look into the eyes of another. By which I mean it doesn’t feel comfortable. I move away from the eyes instinctively. Eye contact is intimate engagement, an interpenetration, something which leaves those feeling vulnerable more than a little nervous about how far the contact being made can go. Unless you know that person very closely, or want to know them more personally, then eye contact strikes me as rude, invasive, or presumptuous. It seems natural to me to look away from people whom you are not on intimate terms with, just as it seems natural to look deeply into the eyes of those whom you are close. Not that AS folk are known for being close and intimate. I’ve never been comfortable with eye contact. People have pointed out to me that I seldom look them in the eye. I am aware that I look away, and so have become skilled in making sure that I am making eye contact in a way that is considered ‘normal,’ and not threatening. But it’s an act on my part, and when I do make eye contact, I am very well aware that I am performing as I ought. And it’s not a very good act at that. A friend pointed out to me that I look slightly past the eyes, never quite at the eyes. I have learned to simulate eye contact, then, like I have learned to simulate other things in normal social interaction and intercourse. I have learned some of the rules of the game and do my best to put them into effect. People may or may not notice my discomfort with eye contact. I suspect that those I am in repeated contact with probably do. I know that people can see me as somewhat edgy and nervous. But they notice nothing like the extent of my edginess and nervousness. They see the placid surface but not the furious paddling going on down below. That shows that it is possible for people with AS to learn new behaviours to interact in a social environment. But it’s an act and it expends a lot of energy. And be aware, too, that I have not internalized this behaviour as a second nature. I am very aware of making eye contact, almost anyway, and am thinking that very thing as I do it. And I can still say that closeness and intimacy are very rare occurrences. There are deep psychological as well as neurological reasons for that:
“Our wounds and hurts and fears are in our eyes. Humans think they build ‘walls’ for internal privacy. They think eye contact is about honesty but they mostly lie because they think they can hide their intent. Eye contact is invasive.”
Carol Ann Edscorn
My feelings entirely. The wounds and scars inflicted by the slights, the rejections, the disappointments, and the fears of all the years as they pass by are etched on the heart and revealed by the eyes. People think that eye contact is about mutual recognition and manners, but they fail to see the asymmetry in the relations between people wounded in different ways. There is no hiding your failures and frustrations from others when you make eye contact. The tell-tale eye gives you away. And it makes you vulnerable and uncomfortable. You would prefer not to do it.
To return to Francoise Hardy, my favourite female singer of all, she wrote a song on precisely this theme, and it is my joint favourite song of hers: Tu ressembles à tous ceux qui ont eu du chagrin ... You look like all those who have had grief and who have sorrow in their eyes. À cause d'un regard, à cause d'un chagrinJe voudrais dire "je t'aime" et je voudrais dire "viens." Indeed. This woman has been singing my song since ever.
Philosophy
“Like Asperger, I too would sometimes like to claim a dash of autism for myself. A dash of autism is not a bad way to characterize the apparent detachment and unworldliness of the scientist who is obsessed with one seemingly all-important problem and temporarily forgets the time of day, not to mention family and friends.”
Uta Frith
I cannot even begin to estimate the number of times my attention has been drawn by the piercing noises made by the smoke alarm in the house in response to my misadventures in the kitchen, calling on me to rescue yet another of those burnt offerings I call my tea. Whilst I can tell the time, I frequently forget to keep it. I get absorbed in other pursuits. I am very 'other-worldly,' especially in relation to the world of my own that I inhabit. ‘It’s good to know you’re still alive,’ my Director of Studies once told me, after I got round to contacting him after six months or so of no communication. I was working on some hugely difficult philosophical puzzle, and such things take as long as they take and don't conform to the demands of those who think important events can be timetabled. I don’t keep in touch, I work (that is, I become absorbed).
In the past, when I wrote extensive pieces on philosophy, I would cut out all distractions, which means that I removed myself from the world and from contact with others. I have only been on the Internet since 2013, and this caused a major change in my relations to the world. I could no longer be as detached and unworldly as I once was, although the fact that I consider the Internet to be my greatest connection with reality gives some indication as to how truly remote I am. I have struggled with the connection, and have frequently considered it a disruption that I should eliminate. In truth, it brings me some kind of contact with people, however much many of them irritate me (which is a lot). In the past, I have become totally absorbed in a problem or an issue which, in my obsession, has come to assume an all-important, all-consuming position in my life. I don’t just forget time as a result; as days pass into weeks and months, I forget – and lose – friends and forget to visit family members. I never see the time passing. And it comes as an immense shock to me to see family members passing. Ideally, I would like everything and everyone to stay the same. This is my Heaven.
That detachment and unworldliness that Frith writes of brings a certain objectivity and clarity. It is the detachment and unworldliness of the intellectual explorer. With it comes the vision of all those who are exiled from all they know to be good and healthy, travellers in an alien land embarked on the journey that will one day bring them home to their true native land. Where is that? What can I say? I have written a lot of books.
The alien-like feeling
“I looked up to the stars and wondered which one I was from.”
James McCue
I don't much warm to notions that we are all stardust and similar banalities. But it's true! So what? We are all made of something that comes from somewhere. So what? What follows? What's new? Dust to dust. Whenever I look at the stars, I wonder which one I am going to. Of course, to the religious minded, we are all pilgrims on a journey to our true native land, Blake’s lost travellers under the hill. But maybe some more than others. In terms of physical appearance, people with AS look like other people, but on the inside they are very different. I say, knowing fine well that I don't quite know what other people are like. I think we should be cautious of claims to be special and precious and different as implying better. I resist the inflation of the ego that reflection on this issue incites. If ‘different’ doesn’t mean defective or inferior, it doesn’t mean better and superior either. That said, there remains something qualitatively different about the different-ness of folk with AS. I like something that Naoki Higashida says here, to the effect that such ‘very different’ folk are ‘more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that might give us quiet pleasure.’ (Naoki Higashida, The Reason I Jump). It’s that ‘alien-like’ feeling again, which points to a certain purity and innocence.
“Although people with autism look like other people physically, we are in fact very different… We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world truly matters for the Earth, that might give us quiet pleasure.”
Naoki Higashida, The Reason I Jump
“This is a FOREVER journey with this creative, funny, highly intelligent, aggressive, impulsive, nonsocial, behavioral, often times loving individual. The nurse said to me after 6 hours with him ‘He is a gift.’ INDEED he is.”
Janet Frenchette Held, Parent
I have come to understand that I am embarked on a journey as an awkward, creative, funny, impulsive, obsessive, oblique, curious, discontented, unfulfilled, irritable, demanding, cantankerous, secretive, nervous, fearful, yet always hopeful and expectantly loving individual. I’m not sure how many will be able to keep up with me though.
Life as journey into being
Life is a series of little losses – loss of youth, loss of friends and family relations, loss of vitality, loss of expectations. If you are lucky, though, and and get on the good road, life is also a series of gains. But life in its living is not about keeping account of the profits and losses along the way, trying to balance the successes against the failures, but about swimming in a sea of energies with as much elegance and beauty as you can muster, exulting in the many joys to be had whilst honouring, in both senses of the word, the pain and suffering that there undoubtedly is.
“Life is… not about counting the losses and the lost expectations, but rather swimming, with as much grace as can be mustered, in the joy of all of it.”
Leisa Hammett
To repeat, the trick is to give thanks for all the good that comes your way, and not be consumed by resentment as a result of all that goes wrong. I say that as one for whom plenty has gone wrong in life. The devil would never express gratitude. Resentment is the road to Hell.
Objectivity in exile and completion in coming home – self-examination as a social examination.
In becoming conscious of your own lack and deficiency, you come to see all that is missing in the society of others.
“It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.”
Elaine Hall
In your lack or deficiency, you can come to see what is also absent or deficient in society much more clearly than those who are successfully adapted to its main contours. In being ill-adjusted, you can see things that those who are well-fitted cannot. The exilic, alien quality of being socially detached brings objectivity. And in seeing things others cannot see, you come to develop abilities that others lack. In developing the qualities you lack, you see how society itself has become lazy and complacent in precisely those areas. The whole thing is relational, and what is missing in one aspect implies a lack or deficiency in another, since relations within the whole have come to be skewed.
“What makes a child gifted and talented may not always be good grades in school, but a different way of looking at the world and learning.”
Chuck Grassley
A different way of seeing, knowing, and being sums up the condition of AS.
I struggled badly at school and scored average marks and grades at best. The odd thing is, in coming to learn how to gain good grades, I lost an awful lot of my authentic and spontaneous self. In getting good at ‘school,’ I lost an awful lot of joy in my core being. The commitment to good grades brought a degree of complicity and compromise on my part that never served me well at all. I remained an outsider, but lost some of the freedom and joy that comes with being on the outside.
New ways of learning, knowing, and being
“The teacher must have to become autistic.” Hans Asperger
In my willingness to train to be a teacher, I started with an advantage.
“Autism … offers a chance for us to glimpse an awe-filled vision of the world that might otherwise pass us by.”
Dr. Colin Zimbleman, Ph.D.
Being in some way on the outside, I see the world and people somewhat differently, objectively. I observe people in the manner of an anthropologist. I observe, I record, and I ponder. That also comes with the danger of objectifying and hence dehumanizing others, depriving them of their subjectivity and agency. Much that I write when I report back from the frontiers may sound odd and unfamiliar to people. At times it can seem that I am making connections that do not exist. That’s quite a leap, some say, when I make some connection between things that are not obviously connected. In explanation I may well have missed a step or two. That denotes a limitation in language and modes of expression in face of a reality that runs to infinity and beyond. I offer an open invitation to people to use their imagination to fill in the missing links. I see it as an invitation into an awe-ful vision of the world, in the sense that it offers an insight into the harshness of cruel isolation and separation, what happens when we are walled off from the company of others (that’s Dante’s vision of the Inferno, a place where people are separated from their best qualities, from others, from all that is good and healthy), and then offers a glimpse of a whole and wholesome world of true connection. That vision is awe-ful in the sense of being awe-filled.
Diffability
“Think of it: a disability is usually defined in terms of what ismissing. … But autism … is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.”
Paul Collins, Not Even Wrong: Adventures in Autism
A disability is usually defined interms of a lack or a deficiency. I don’t shy away from the word ‘disability.’ Living my entire life with an undetected ASC has been utterly frustrating and exhausting, for me and for those in contact with me. It has constantly had me striving to attempt things that others do easily, never understanding why seemingly simple things never come easily, if they ever come at all. I learn to do without. There are certain things I am lacking or am deficient in, and there is relief in coming to know this and in being able to acknowledge this openly. On the other side, though, I have certain qualities and have developed certain capacities which, although they may be pejoratively described as an excess by those who have no idea, could much better be expressed as a super-abundance. True, it is an anarchic excess that signifies an over-development or over-expression of certain traits to the neglect or exclusion of others. A balanced and fulfilled life needs to draw on all sides of the human being. But it is still a surplus which very different people can bring to a normal society that is narrow, over-specialized, and deficient in many respects itself. We can blend and complement, create a greater fullness within the whole, and ensure change for the better.
“See the person, not the label.”
Temple Grandin
I’m not sure about this quote from the admirable Temple Grandin. Without the label, people would have carried on ignoring my qualities, oblivious to the huge efforts I have to make just in order to survive. If I didn't have the label, others would see me as just another normal person with no-one to blame for my failures other than myself. Without the label I am back in the open competition with others who are much better equipped to succeed. The survival of the fittest, with those in need identified as weak and sent to the wall.
“I think when one becomes identified with a label that’ll become all anyone sees; the expansiveness and breadth of the all of who you are suddenly hidden from view. I look to the entire history of the label and how it came to be. Our Western world likes to compartmentalize putting everything into simplistic categories. Now they have such terms as “neurotypical” and “neurodivergent,” separating the entire human population on the planet into two categories. I would say that “neurotypical” is a diversity as well.”
Kurt Muzikar, Introduction to Bozo to Bosons (not yet published)
I don't care for such definitions and divisions, to the extent that they separate people from one another and imply that some are more special than others. I don't think that that does anyone any good, least of all the people we may be trying to help.
“The labeling undermines us in so many levels! But people don’t know, they need to be reminded that we too are God’s children. People don’t mean harm because they too are God’s children. Love heals lots of wounds. Love is patient, love is kind; my motto in life. You are loving. Mom has healed her consciousness to allow me to truly reflect my real identity as God’s perfect child. Just don’t let your senses get you fooled, we are more than our bodies. Find the truth so you can reflect your real being.”
Nicole (13 years old, non-verbal, labeled autistic.. typed independently on her iPad)
The wise, the innocent, and the wild.
“Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven."(Matthew 18: 2-3).
The phrase ‘Love is patient, Love is kind’ comes from 1 Corinthians. I had it read at my dad’s funeral service. It was perfect. I like the reference here to the universal embrace and indiscriminate love of God. To God, there is no label, no zero, and no abnormality. God is the truth, the core of being, to which all things are connected, in accordance with which all things are equal.
I have written at length on this (of course I have).
https://pcritchley2.wixsite.com/beingandplace/post/2019/10/21/the-love-that-seeketh-not-its-own
“I know of nobody who is purely autistic or purely neurotypical. Even God had some autistic moments, which is why the planets all spin.”
Jerry Newport, Your Life is Not a Label
Other explanations are available. But, true enough, all are enfolded in God’s Love embrace.
“As soon as a child is capable of understanding, they will know they are different. Just as a diabetic needs insulin, an autistic child needs accommodations … The label gave me knowledge and self-awareness.”
Steve Andrews, Platinum Bay Technologies.
Absolutely! I have written on this, too.
https://pcritchley2.wixsite.com/beingandplace/post/2020/02/15/a-well-paced-and-non-surprising-environment
support and help
“For autistic individuals to succeed in this world, they need to find their strengths and the people that will help them get to their hopes and dreams. In order to do so, ability to make and keep friends is a must. Amongst those friends, there must be mentors to show them the way. A supportive environment where they can learn from their mistakes is what we as a society needs to create for them.”
Bill Wong, Autistic Occupational Therapist
Without that supportive environment and without helpful others, autistic individuals cannot succeed. It is this simple truth, easily observed in practical life, which justifies the use of the term ‘disability.’ It is not enough for people to say that there are other ways of doing the same thing, and that AS people are alternatively abled in some way, because without the help and accommodation provided by others, those different abilities could barely arise. The people who blithely make such comments presume the availability and accessibility of helpful others. To which I say: where have they been my entire life? I mean people who are helpful above and beyond the social norm. I mean people who will see others struggle with the seemingly simple and easy and offer help. I have sought help. I long ago became resigned to disappointment. I don't take people according to their self-image. Of course people will say the right things in public, but the truth is that help is stronger when given in proximal relations and loyalties. Why should others give something of themselves to help those they do not know? People feign concern, but practise it only weakly as distance in connection is increased.
“For every 3 years your child is in public school, you can expect one exceptional teacher, one mediocre teacher, and one teacher who makes your life miserable.”
Rick Seward, disability advocate for Alpha Resource Center inSanta Barbara, 2002
Those proportions are too symmetrical to be trustworthy. I am not inclined to revisit my school days. I’m just glad I can’t count. To be fair, I don’t think teachers set out to make your life miserable. That's just how it can seem. As I recall the teachers who did make me miserable, I can see that they acted with the best of intentions, but were doomed to failure in the absence of understanding as well as time and resources. I do remember being at odds with most teachers. But I don’t actually recall one teacher whom I could say made my life miserable, not intentionally. I could say that most made my life miserable, but that merely expresses my general experience of being at school. Even the mediocre teachers whom I took a dislike to were, I am inclined to accept, well-intended. Teachers are people, really, and come in the usual flavours. A lot of the kids made my life miserable, and did so deliberately. I was difficult to teach, difficult to understand. The teachers were faced with working out whether I was lazy or stupid. Those were the only options given the general level of understanding in the day. Those who grasped the possibility of other options had to look hard, and time was always short in over-sized classes. The constraints of teaching militate against the discovery of any special needs in pupils let alone talents. The few that did see other possibilities in me were the exceptional teachers. There were some. Most gave me up as a waste of time. Which is probably all that they could do, and a wise decision. I was time-consuming, and I was far from being alone. Teachers were hard-pressed and, in classes of over thirty, had to play the percentages. I was not a good investment of time and energy, others were. I would have been a gamble unlikely to pay off. At one parent-teacher meeting, my Physics teacher, smiling, said this about me: ‘he’ll find his own level.’ I do hope so. Isn’t that all we can ask for? I’m interested in the implications of comments like this, revealing the presumption that people like me end up on a level somewhat lower than most, and know and accept our place. That was the implication. Other teachers set a higher standard for me, and in response to such encouragement I attained them. Maybe I was poor at Physics, then? Possibly. I was never interested in the subject, and therefore I was no good at it. So what, if you have explained the operation of physical processes? I was happy enough to know that things worked. I was more interested in what human beings do with the physical stuff than I was in the physical stuff. But I did actually make an effort, just the once, and revised as hard for the Physics exam as I did for History. I went from the usual bottom end placing to being fourth in the class. My reward? As I waited to see the teacher first class back after the exam, I looked in his desk, and found and read his notes on the exams. The word ‘cheating?’ was written next to my name. I was horrified and disheartened. Matters were made worse by my form tutor who tore a strip off the class for the generally poor performance in the Physics exam. Most had recorded decidedly average and poor marks, which somewhat diminished my pride at coming fourth. Worse, he made a point of highlighting the huge disparity between the high marks recorded by the top three pupils, and the large drop to the mark recorded for fourth place, with things getting worse from there. That fourth place was me! His point was that there should have been a gradual drop of marks from top to bottom, and not the chasm that opened to fourth and further down. In other words, only the top three pupils had done well. The rest of us were miserable, appalling, lazy failures. This was my best ever placing in Physics, making me feel so proud, and yet I was still classed with the losers at the lower end. And I was suspected of cheating, too. I gave up. I didn’t bother with Physics after that. I had no interest in the subject in any case. And in later years I found out that most of what is taught is either basic or wrong and not the really exciting stuff in any case. My French, English, and History teachers expected good things from me, and I didn’t want to let them down. I received encouragement and I wanted to repay the faith they had in me. I passed in those subjects. I need an interest, a motivation, a desire, a point, a purpose. People do, generally, with respect to all other things. I couldn’t see it in physics. I still don't. Statements such as ‘physics trumps politics’ leave me entirely cold. For the reason they miss the crucial point of motivations and morals by a very wide mark. Rest your politics on claims like that and you are going nowhere fast.
“We need to embrace those who are different and the bullies need to be the ones who get off the bus.”
Caren Zucker, co-author of In a Different Key
Damn right! I should add something here on the years of systematic bullying I suffered at secondary school. I need to think long and hard on this, because the details could well be too harrowing, not least for me. It’s not an area I care to revisit and, having developed muscles and a decent pair of shoulders, might be tempted to want to settle more than a few scores. I have steered clear of that feeling in the main. Nobody finds the image of violent, aggressive, angry brutes attractive, so I have determined to remain my humorous, witty, charming, and humble self. Suffice to say, the usual skitting and sarcasm that I had become accustomed to in junior school became something far more vicious in senior school, before returning, three years later (as I developed physically and became much feistier), to the usual sneering and put-downs. The bullying had nothing to do with physical weakness and everything to do with being different and standing out from others. I was odd, peculiar, I said and did things in a way that marked me out from others. I was an obvious target by those who like things samey.
That experience could have turned a lot of people hard and bitter. I remained true to my core and never lost my good nature. I remained an innocent and resisted the slow corruption that claimed the others. And for that, I am grateful for the fact that AS is incurable. The sharp-minded will note here that it may well have been my AS that drew the bullies in the first place, so it did me no good in that respect. To which I say, I would rather be me than be them. I have seen human beings and life in various colours, some rich and vibrant, others much less so. And for all the innocence, I am without illusions with respect to people. I’ve broken through to a reality that is far beyond those who are fitted to surfaces. I have lived life in a different register to most. I know that difference is not necessarily recognized, let alone respected, and often makes those who are different a target for assault. But I have been different all the same. Not by choice. I make no cult of difference. I shake my head in disdain at those who are vocal in proclaiming how different they are, presenting themselves as rebels and non-conformists. To me, they are the very epitome of ‘normal,’ with their jobs, houses, families, bucket lists, and entertainment. They seem to think that their determination to serve their likes and repudiate their dislikes in the teeth of all collective purposes and loyalties, political and religious, makes them rebels. It doesn’t: it makes them the ultimate conformists in an age dedicated to pandering to the ego. And I am very grateful to be different from them. And I do resent them telling me how different they are and how much they themselves are ‘on the spectrum.’ Spare me, please.
Legacy
This quote strikes a very deep chord with me:
“I don’t want my thoughts to die with me, I want to have done something. I’m not interested in power, or piles of money. I want to behind. I want to make a positive contribution – know that my life has meaning.”
Temple Grandin
In December 2016, I suffered a massive heart attack. Whilst lying in Accident and Emergency in Broadgreen Heart and Chest Hospital, waiting to be taken into intensive care, a doctor told me that it was ‘too late,’ before going back to the problem of finding a bed for me. By that I understood him to mean that there was nothing they would be able to do for me and that I was being taken into hospital to die. I didn’t react, neither externally nor internally. I was perfectly calm, in fact. This is it, then, I thought as I lay there on my own. I may be gone in a few hours, I thought. A life of constant disappointment, seeing my hopes so frequently thwarted that I had long ceased expecting much good to come my way, is good preparation for such a moment. For once, my mind was not flooded with myriad thoughts exploding in several directions at once. I had two very clear and very simple thoughts. I’m in good relation with God, I thought. I have many failures to my name, but I have always acknowledged them, not least my failure to overlook some of my worst failures. God loves a trier, I told myself, and I had always tried, no matter how many rebuffs I suffered along the way. I am not only aware of the many times I have failed others and failed myself, I have had them on my mind constantly. I worry every failure to death, trying to right wrongs in my mind. Which is surely a form of remorse seeking forgiveness. I pray every day, and I confess my sins, and make a solemn promise that I will try to do better. If I ever fail to do better, then it’s never for ant of trying. And even if I fail, I have learned by constant practice to fail beautifully. I also remembered some of the good I have done. I’ve looked after folk here and there, helped people out, cheered folk up, made people smile, and been somewhat amusing. That’s not bad, I thought. Then I came to my written work. I had held a Top 0.1% rating on Academia for a number of years. I have written a number of books and papers, and made them all available in free access. Then there are my exchanges with scholars and students, helping them in their work, achieving PhD and publication. All my time and talent given for free. I had a quick think, saw my life whole in an instant, and was overcome by a great feeling of peace. ‘I’ve not done badly at all,’ I thought. Then again, I have spent a life perfecting the art of self-justification.
In Thinking in Pictures, Temple Grandin wrote this in her concluding chapter:
'The possibility that a void exists after death has motivated me to work hard so I can make a difference – so that my thoughts and ideas will not die.
The world’s libraries contain our extra soma, or out-of-body genes. Ideas are passed on like genes, and I have a great urge to spread my ideas. The only place on Earth where immortality is provided is in libraries. This is the collective memory of humanity. I put this on a sign and placed it over my desk.'
Grandin has never married and has no children. I could see where her thinking comes from, spreading her genes culturally through her ideas rather than biologically. Looking back on how many people had read me through Academia, recalling their messages as well as the work I had done with other scholars, I felt that I had spread my ideas widely. I was feeling remarkably smug, for one who was about to die.
Then the doctor returned to speak to me again. In my peace and contentment I listened and, as I did, slowly worked out that by 'too late' he was referring to the possibility of the heart as having suffered permanent damage. Oh, I said, ‘I thought you meant I’d had it.’ ‘Good grief no,’ he replied. Not for the first time in my life, and not for the last, I had misunderstood. Never in history can someone who has just been informed of permanent damage to the heart have been so pleased. I survived. Who knows for how long. But the thoughts I had were the right ones. And I was right to be contented and grateful. Get on good terms with God and serve true ends in all that you do is as good a design for life as there can be. And leave something good behind, something that is your unique contribution to the rich tapestry of life, something that is of an enduring quality, something that others can partake of, take up and take further. Money and power are the most ephemeral and meaningless of things. I’d just qualify one aspect of the Temple Grandin quote, though. In creating that vast body of work I have not created the meaning of my life; it is in knowing that there is an inherent meaning in life that I came to offer my contribution to its disclosure and unfolding. In sharing in that meaning, my life has meaning. It’s not a creation, it’s a participation.
To see the world in pictures and colours
“I see everything in color. I have synesthesia, which means that the part of my brain – that controls the senses – sight, hearing, touch, smell and taste – are wired differently.”
Jeremy Sicile-Kira
I write in colours. I colour code my writing. I write in different font colours, and I highlight text and shade the background in different colours. A body of text written by me can look like a work of art. I like a work to be aesthetically pleasing. I write to the sound of music, too. This is not as crazy as it looks. The colours indicate sources, categories, and meanings, enabling me to identify, link, and locate the texts immediately. Even so, I do think my approach is somewhat unique. I have read that Yeats did something similar.
I once did some psychic profiling that revealed me to be a 'creative visualist' thinker. I think in pictures. It is little wonder that I see beauty as the supreme political category, opening the path to truth and inviting the heart to follow. I see the world in colours.
“Art can permeate the very deepest part of us, where no words exist.”
Eileen Miller, The Girl Who Spoke with Pictures: Autism Through Art
‘Word, return to music’ (Osip Mandelstam, Silentium). This is the anarchic excess which is the deepest core of being, taking us to a reality where there are no words and reasons, and none are required.
“Years before doctors informed me of my high-functioning autism and the disconnect it causes between person and language, I had to figure out the world as best I could. I was a misfit. The world was made up of words. But I thought and felt and sometimes dreamed in a private language of numbers.”
Daniel Tammett
I could rewrite this easily to fit my own experience, only changing words for numbers. The idea that the world is made up of numbers is something of a handicap for me seeing as I can’t count. I am fascinated by numbers, certainly. I am forever doing word counts of my texts. My poor DoS had to tell me to stop putting a word count on the front of the papers I would submit to him. He asked me to imagine how dispiriting it was to know how long a piece of work he was obliged to read was as he set out to read it. He wanted to be gripped by the words, not deterred by the numbers.
I certainly know all about the disconnect between the world and I. I have sought to reach out and connect with others through words. Unfortunately, I have found that words can be misunderstood and misinterpreted and be used as much to divide people as they can to unite them. I am cheered by the knowledge that the great Dante Alighieri wrote at length on precisely this problem in an attempt to reinstate the unifying potential of language. This even though, philosophically, I am a critic of nominalism and argue that words are merely blunt and limited instruments when it comes to conveying a reality that always escapes enclosure by reason. ‘Word, return to music’ is a quote from the poet Osip Mandelstam that I repeat often. It takes a true poet to use words to call for stillness and silence. Words are all I have. You will see and hear me through my writing voice. But it isn’t quite true to say that I thought and felt and even dreamed in a private language of words. Not quite. I use familiar words and terms, and so am very public. I write with public intent (as indeed did Dante).
But here is the first twist: I use those words and terms uniquely, a little differently to common understandings; I blend them into other contexts that alter their meaning and significance ever so slightly in the process. My DoS told me that he was unsure whether I had read a lot and misunderstood a lot or whether I was a genuine one-off. I was a one-off. I use words creatively with respect to meaning. “Know the rules well, so you can break them effectively.” And in breaking new ground, never ever allow yourself to be dragged back into restating the rules on the old ground. That is something that always really angered me when engaging with others. Because, in my insecurity, born of years struggling at school, I always felt a challenge to be questioning whether or not I knew my stuff, leading me feeling the need to prove my knowledge all over again. Boring and idle.
And here’s the second twist: I see words as pictures and patterns; I see the world visually, in pictures and in colours. When writing I colour code the text. I see the world in colours. I use words as paint. When I see a piece of text, I don’t read from left to right, line by line to the bottom of the page. I see the whole page at once and my eyes dash all over it in an attempt to encompass the whole in one view. I see the page of text as a painting. When I write, I turn the page into a painting. That may explain why I have difficulties reading a piece of text verbally. My eyes dance all over the page. I could read in conventional order at school, and didn’t struggle. But since then, my brain has speeded up and powered up in some way. When I stick to reading line by line, it feels like walking down stairs by using the conscious mind only: I stall, stumble, and sometimes fall. That’s when speaking. I read text at my grandmother’s funeral. I have no doubt everyone thought that that would be easy for me. It really wasn’t. Reading isn’t easy for me. I memorized the biblical texts and spoke without needing to read. I used the texts as safety nets and guides.
The world in colours
“I draw my inspiration from people and the world. I see the world full of bold colors, and I am fascinated by our differences, differences that make us all special and unique human beings. My inspiration also comes from the fact that everyone in the world has something special to offer, no matter their race, color, religion, or disability. There is beauty in everything I see, and my hope is that the world can see beauty and acceptance through my eyes.”
Ronaldo Byrd who participated in Created on Ipad gallery.
Everyone in the world has something special to offer. That's my view. The biggest problems in the world stem from people being thwarted and blocked in some way. Everyone has a story to tell: they just don't always have someone to tell it to.
“Autism is as much a part of humanity as is the capacity to dream.”
-Kathleen Seidel
I'm something of a dreamer. By night, of course, but most of all by day, when wide awake. A Tapestry of Dreams is a great Charles Aznavour album. I have two copies.
“I see people with Asperger’s syndrome as a bright thread in the rich tapestry of life.”
Tony Attwood
Others may find people like us annoying and irritating. And discomforting. I am nowhere near as bad as I used to be in this regard, but the threat of a critical observation upsetting social norms and taboos is always present.
Patterns
“Vibrant waves of sequenced patterns emerged in my head whenever I looked at musical notes and scores. Like pieces of a mysterious puzzle solved, it was natural for me to see music and its many facets as pictures in my head. It never occurred to me that others couldn’t see what I saw.”
Dr. Stephen Shore
Over to the musicians. Whenever I read, ideas explode in my head and I start to see pictures and form patterns. As with putting pieces of a broken picture back together, it is natural for me to envision ‘philosophy,’ by which I mean every facet of life, as one big picture composed of many pictures in my head. I make connections between things that, to others, do not seem related. It seems obvious to me that if there is the one reality, then all things within it must be connected in some way. The advance in knowledge comes in learning these ways. I picture patterns opening out into patterns, so that if I write on one thing, I soon start to feel the need to write on two or more other things, and so on in endless, exponential growth, building in short time to embrace all things except the most important thing of all, the anarchic excess which transcends reason and fact, which is God, who encompasses all things. If that strikes people as odd, it strikes me as strange that people cannot see the world as interconnected in this way. And by this I mean 'see' as in 'picture.' I read people affirming the interconnectedness of the world, only to write on the usual, narrowly physical, aspects of this interconnection. I want to see in print the whole pie that I see in my head. Which, of course, can’t be done, because the map is not the territory. But in my madness, I fill the world with words in any case. I have written twenty million words in twenty five years. If I keep going at this rate, then in twenty five years’ time, I may have enough words to match the tiniest of drops in the ocean. So it may be best for me to synthesize. Which is what I have been trying to do.
Connection
“Connection is what moves this world forward. Connection is a profound human experience.”
Jenny Palmiotto, The Therapist Shift
As the great Dantista T.S. Eliot wrote, ‘Only connect.’
Emotional intelligence
“Nowhere am I so desperately needed as among a shipload of illogical humans.”
Mr.Spock
I’m not at all comfortable with the identification of AS folk as geeks of a cold, inhuman logic. Temple Grandin wrote of her love of the TV show Star Trek, and especially Mr Spock, in her book Thinking in Pictures. I must admit that I loved Star Trek too, and especially Mr Spock. i think it was his ears that did it for me, but his general oddness was most amusing. I have read many with AS claiming to be more interested in facts, reason, and logic than emotion, dismissing the superstition of religion most disdainfully. Truth trumps feelings, I have heard many say. There is also a marked preference for objects over people. I find this to be crude and simplistic, utterly lacking in nuance, and cold and inhuman. I note the tendency to equate truth with facts or, at a push, with logic. I don't care for this attitude. There is such a thing as moral truth and moral knowledge. There is also an emotional intelligence. And it is possible to be a geek about those things too. I am. In my commitment to truth, I like to explore the grey areas between black and white. I find human beings to be far more interesting, inspiring, and infuriating than objects.
“Autism is here to stay and may be considered a part of the diversity of the human gene pool.”
Dr. Stephen Shore
“A person with autism hears every sound intensely magnified. Thus, if the tone of voice is harsh or strict, they will feel scared and threatened and, consequently, may inadvertently scream or even attack. Aggressive behaviour is brought on by fear.”
Joao Carlos Costa, 21, non-vebal, autistic
A person with AS is a person who is in sensuous over-drive, seeing, hearing and feeling all things as intensely magnified at once. You can’t live that way, it is confusing, disorienting, and exhausting. But at times it can yield the most intense of ecstasies. In the plural.
“My autism makes things shine. Sometimes I think it is amazing but sometimes it is sad when I want to be the same and talk the same and I fail. Playing the piano makes me very happy. Playing Beethoven is like your feelings – all of them – exploding.”
Mikey Allcock, 16-year old who was non-verbal until age 10
Just don’t forget to come back and come down.
“Are your eyes listening? That’s what needs to happen to hear my writing voice. Because of autism, the thief of politeness and friendship, I have no sounding voice. By typing words I can play with my life and stretch from my world to yours. I become a real person when my words try to reach out to you without my weird body scaring you away. Then I am alive.”
Sarah Stup, Excerpted from “Are your eyes listening? Collected Works” by Sarah Stup
This statement resonates deeply with me. I have used the phrase 'my writing voice' many times. To truly see me you will have to use your eyes to hear. As for the vast body of work I have produced over the years, I can only say that I have a ‘writing voice’ rather than a sounding voice. And that writing voice declares my existence more than my face and person have ever done. When I first established my Academia page, I had only the one recent photograph of myself, which was my passport photo. I was discovered by someone, a professor, who became a dear friend, who noticed the photo and said I looked like someone either on the way to prison in North Korea, or already there. Surely, she asked, I had one person in my life who could take my photograph. I had this one, rather stern looking image for my passport, and a vast body of text. I make myself seen and heard through word. I am more visible these days, but not more vocal. I still refuse to give talks and lectures, still don’t address groups and classes, meet few people, avoid difficult conversations around my work, and turn down requests to meet people over the Internet. I try hard not to speak about the things I write about. In the end, I like to preserve a little mystery. And leave it for people to make their own discoveries and draw their own conclusions.
The contrast between the twenty million words I have written and the odd talk I have given over the years is stark. My dialogue through the written word on social media is vast. But in person, face to face, I say little, at least in groups of three or more. I have made the effort here and there, but am soon put off by others. You see, when someone speaks, my head explodes with many ideas that go in all directions at once. The only way I have been able to explain this is by opening the fingers of my hands out as in a firework explosion. One sentence from another person becomes several in my head. I need to come in immediately at this point, but hate to interrupt. With people close to me I will interrupt, because I desperately need to avoid my brain exploding with the exponential accumulation of ideas. I can dominate conversation then. Because I have to if I am to speak at all. With people who are not close, which is nearly everyone, I don’t interrupt. If they don’t pause quickly to let me in, I have to suppress my internal thoughts by switching off. I numb my mental processes so that when they have finished, the conversation has finished, unless their very last sentence contains something that could spark me back into life. In the main, I have lost interest. By writing words I am able to be creative, playful, and spontaneous in a way that I cannot be in person, extending my being into the world by the only way I know how. You will see me in words and you will hear me in words. That is, you will experience my fullness only through my writing voice. It is through the writing that you will see me and hear me, or hear the philosopher I have become in order to be seen and heard. For the real me, there is, as yet, no sound and vision at all, and the words are merely the thieves of true identity and fulfilment.
Word, return to music.
Return to source, where no words exist.
The conscious intelligence
“Just one step in front of each other, each day. In the end, that is all, we’re expected to take.”
Donna Williams, (1963-2017), Footsteps of a Nobody
Superior
“Stop thinking about normal…You don’t have a big enough imagination for what your child can become.”
Johnny Seitz, autistic tightrope artists in the movie Loving Lamposts.
Normal is what most people do. I’m not most people and never have been. I make no special virtue of that identity. I can think of many situations in life when being normal would have served me very well indeed, getting me gainfully employed and happily married. To those who make a fetish of difference I would simply say: try being different to the extent of contradicting social norms on a daily basis. Because that is what I have done since ever. That said, we shouldn’t be thinking about normality, seeking to measure up to existing identities and fitting ourselves to existing practices. We should, instead, be thinking about our own healthy potentialities and how these, in their realization, could come to contribute to, and change, the world and thereby create a new and better normal. It is the very different folk on the outside that have the combination of intellect, imagination, and motivation to effect that mind-shift. If you want a new normal, then call on those currently considered abnormal. It is always the misfits who subvert, challenge and change the parameters of the prevailing society. I’m available.
“We can use Asperger’s as a super power if we focus.”
Daniel M. Jones
I have been able to put reality – and people – out of mind and focus. It is inhuman, a denial of Aristotle’s maxim that human beings are social beings. But I suspect that AS has given me formidable powers of concentration in the past. I tend to think that differences in intelligence between individuals are much less important than possibilities of finding the right environment fostering and focusing theintelligence.
“Rigid academic and social expectations could wind up stifling a mind that, while it might struggle to conjugate a verb, could one day take us to distant stars.”
Temple Grandin
It's that journey to the stars again. There is more to education than exams, grades, and even intellectual excellence. There has to be a point, a purpose, a commitment.
Socializing
“What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”
Dr. Temple Grandin
I’m not very good at small-talk. The small-talk of others bores me rigid. Come to think of it, the big-talk of others bores me rigid too. I don’t much like talking with myriad others. Unless it is about me, Elvis, Liverpool football club, Llandudno football club, goats, hares, seals, octopuses, and my wonderful new health and fitness programme. Basically, I like to talk about myself and my interests. When you have lived life alone, you become your own main object of interest and topic of conversation.
“Without deviation from the norm, progress is not possible.”
Frank Zappa
I’m pretty deviant. I reject the fetish of difference and the cult of the self to seek a return to order through voluntary constraint. Try that for deviation in an age of selfish individualism.
I would just be cautious with respect to notions of valuing AS people for having a high and superior intelligence. Some do, but a lot don’t. High intelligence is not a requirement to be valued as a person. This notion of possessing a super-power is beside the point. I don’t value human beings because they are world-changing geniuses. Some of the geniuses of the species have changed the world in ways that may, one day, bring it to an end. Whilst contented folk socialized happily around the fire, the neurotics explored their surplus energies in solitary pursuits that invented the tools that broke up that socialization and drew the contented folk into the permanent discontent of a purposeless mechanization. I don’t care for that vision. I really wouldn’t mind sitting around the campfire talking endlessly about Elvis. That’s one star I really would like to go and see.
Individuals on the autism spectrum are to be valued not because they are geniuses and special, no more than anyone of high and superior intelligence are to be valued more than those considered less so. Human beings are to be loved and cherished as human beings who share a common kinship and needs, not because they have some exceptional ability oroutstanding achievement to their name. I prefer the equality of all souls to the meritocracy of those who earn their keep. We can certainly value the ability or achievement, and express gratitude for any benefits accruing to society as a result of them. But the argument for valuing neuro-diversity rests not on the superior abilities and achievements of those on the autism spectrum. The worth of those who are not neuro-typical does not depend on their exceptional talents, but applies to those who are not much good with words, numbers, paint, and music. The superior intelligence and abilities line is full of dangers, implying that the failure to be neuro-typical has to be cancelled by some achievement of value to society. It’s as if an AS person is to be valued, he or she has to win the war almost single-handedly as in the case of Alan Turing. This is an appalling view that threatens to condemn the great majority of people to neglect. The argument for valuing neuro-diversity is not based on the exceptional abilities and achievements of some on the autism spectrum, but on valuing human beings who, on account of their different-ness, have hitherto been excluded or marginalised in society:
“The concept of neurodiversity provides a paradigm shift in how we think about mental functioning. Instead of regarding large portions of the American public as suffering from deficit, disease, or dysfunction in their mental processing, neurodiversity suggests that we instead speak about differences in cognitive functioning.”
Dr. Thomas Armstrong
“Don’t think that there’s a different, better child ‘hiding’ behind the autism. This is your child. Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child. You may have to work harder on some of this, but that’s the goal.”
Claire Scovell La Zebnik
assets and deficits
“The difference between high-functioning autism and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored.”
Laura Tisoncik
And
“Using the term “high-functioning” discounts or dismisses the person’s needs or struggles… Using the term “low-functioning” discounts or dismisses a person’s strengths and capabilities.”
Tom Iland, The Fallacy of High and Low Functioning Autism
This is a very perceptive comment. I can say that some of my assets have been acknowledged, but not in a way in which has brought me much success and satisfaction. I went from being a fairly average academic performer at school to being one the best at university and beyond. In hitting the grade ‘A’ distinction at A level (when such a thing meant something) to PhD level, I anticipated some measure of praise and recognition. But I realize now how this was an utterly unwarranted expectation on my part. The people who saw my achievements only knew me for those achievements, and hadn’t seen my past struggles and how these made my achievements praiseworthy. This was so frustrating for me, and meant that my need for praise was destined to be ignored. Others simply saw me as highly intelligent, a dominant performer in the tutorials and essays, and therefore not meriting much by way of praise. If anything, there was a certain sniffiness. I was so often top or near top with the marks that I was considered something of a pedant, a bore, and a swot. What people didn’t see was the years of struggle at school, when I was forever behind, the butt of jokes and ridicule, and a very poor performer indeed. And, of course, the people who thought me an idiot were no longer around to see my academic achievements at a later date. The obvious conclusion that I was AS was completely missed, as was the struggle on my part to overcome my lack and deficiency. Being high-functioning, my deficits were ignored and my achievements belittled by being assumed. My strengths and capabilities were discounted and dismissed; people presumed I had them because I was clever or a hard-working swot; my struggles and needs were likewise discounted and dismissed, just unseen and therefore ignored. And so I have carried on with a mind-set that has had me forever trying to vindicate myself and prove myself, in an attempt to obtain the recognition from unknown others who, unless they knew of the AS, could never know, even if they could ever care. It’s a never-ending cycle that I need to end, by abandoning the deep need to prove myself.
superiority and equality
“Sometimes it is the people no one can imagine anything of who do the things no one can imagine.” Alan Turing, creator of the first computer used to break codesduring WW II.
Alan Turing was regarded as being socially aloof and eccentric by colleagues and friends. He was interested in mathematics, chemistry and logic from an early age, to the exclusion of other activities. This paper attempts to establish whether Turing fulfilled the criteria for Asperger's syndrome.
O'Connell H, Fitzgerald M, Did Alan Turing have Asperger's syndrome?
Did Alan Turning have AS? It is wise to be cautious. And I’m not too concerned to make the case for geniuses to be included in a roll-call of AS people. I would love to be in the company of Mozart, Einstein, Isaac Newton, Ludwig Wittgenstein, Thomas Jefferson, and AlanTuring, though. But being brilliant in one thing and anti-social in most other things hardly constitutes a solid diagnosis. I had to really work hard to become good at philosophy, which meant I had to give up a lot of my other, very social, activities. I loved football, but had to give up my season ticket at Liverpool to save time and money. Being brilliant doesn’t come easy and doesn’t come without sacrifice, and if you specialize on a solitary subject, the social side of life comes to be much diminished. That in itself doesn’t prove anything. In the 2003 paper, Henry O’Connell and Michael Fitzgerald went through Turing’s biography in search of anecdotes and descriptions of Turing that would support a diagnosis of Asperger syndrome. They found enough concrete evidence to make a case. But it may be possible to do something similar for all those who work hard to achieve brilliance in a specific area. There is no substitute for proper diagnosis, or an account from the person themselves. Attempts to identify figures of genius from the past as AS reveal more about our current interests in otherness and difference than they do about those figures. The reasoning often seems fuzzy and forced. The absence of the figures themselves giving a personal account to fill in the crucial missing details makes clear the extent to which we are still a long way from understanding the enigma of ‘very different’ people. And it is in that spirit of reporting back on my own enigma variations that I have committed so many personal revelations to print. I’m not a genius, mind, at least I don’t think so, but I am fairly eccentric. Lorna Wing writes of the outer edges of the autism spectrum where Asperger syndrome “shades into eccentric normality.” I’d declare myself an inhabitant of the land of eccentric abnormality, with occasional mis/ad/ventures into the realms of normality. I’m normal enough to have been successful in a few, narrow, areas, and to have just about survived the failed attempts at socialization and domestication. In terms of a repeated and sustained profile though, involving reiterated encounters, I’ll have to declare mixed results. If I am being brutally honest, I’d have to declare myself a complete failure. 'Could do better,' as my school reports always said. But I’m happy.
growing into being
“The good and bad in a person, their potential for success or failure, their aptitudes and deficits – they are mutually conditional, arising from the same source. Our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him, but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives.”
Hans Asperger
Well that’s something to look forward to. The growth into responsibility is something that applies to all people. But it is more difficult for some than it is for others. Always the issue is one of the individual assuming as much responsibility as he or she can whilst recognising the extent to which the individual is confronted by 'global' forces and issues that require the assistance, support, and cooperation of others. Individual and collective responsibility are not either/ors but proceed hand in hand. Lose one, and the other cannot but be impaired. Debates that pit one against the other lead nowhere.
incurable
“There is no cure for being human,” Cheri Rauser, mom to Isabell
AS is not a disease in search of a cure, it is a way of being that you learn to live with by growing into.
sensitive
“Autism is about having a pure heart and being very sensitive… It is about finding a way to survive in an overwhelming, confusing world… It is about developing differently, in a different pace and with different leaps.”
Trisha Van Berkel
How does that Linda Rondstadt song go again? ‘You and I travel to the beat of a different drum .. you can’t see the forest for the trees.’
Or the trees for the forest.
This purity is glimpsed on the surface of society in the form of an innocence and naivety that, over time, comes to be further magnified by remoteness. The situation is akin to a rare plant that is raised in a unique environment.
To be very different is to face unconscionable difficulties in everyday living.
Life is about navigating your way through an inordinately complicated and confusing world and making the effort is frequently experienced as overwhelming.
“We are at the doorway into a New World Order that is based on love and heart. We have the heart key. We only need the respect of others to learn how to serve wisely and kindly.”
Lyrica, nonverbal, from the book Awetizm
This seems to be wishful thinking more than anything else. We seem to be ever poised at the threshold of a new age of heart, love, and peace. That promise is based on God’s gift of peace to the world, but it has been a long time being redeemed. Dante made this political peace central to his vision in the fourteenth century. It is a promise that human beings are enjoined to redeem as moral agents. We get so close, and then recoil. The dynamics here are not chronological, although they have a history. Heart, love, and peace were as possible to humans in the past as they are to us in the present. Their attainment is not based on developments in hard technology, institutional power, or industrial quantity, but on a qualitative change in being. We are equipped with the key to the door, activating the truths which are engraved on the human heart. Those truths have always been there. We only need to embrace communion with others in learning to live wisely and kindly in service and sacrifice to cross that threshold. And that ‘only’ referred to in the comment is actually a gigantic leap for those fitted to a world bent out of shape. The innocence of the AS folk is here seenas a virtue the tired, cynical, misdirected, and all-too-well adapted society needs to revitalize itself.
“Humane storytelling is the way to advance society’s understanding of #Autism as it has the potential to change people’s hearts and minds.”
Tom Clements
I go big on narrativity. Human beings are story-telling animals. Stories are key to educating and inciting the inner motives.
https://www.academia.edu/41206409/The_Ecological_Comedy_The_Case_for_an_Existential_Literary_Ecology
I am telling this particular story just to clarify the issue in my own mind. It’s a self-examination and self-exploration on my own part. I had no option but to leave the diagnosis to others better qualified than I am. But since every AS person is unique, then I am the expert and the authority with respect to my own life; no matter their level of qualification and certification, all others must know that they are in the early stages of the journey into the enigma that is the autism spectrum. If they journey far enough, they can meet me coming from the belly of the unnameable and untameable beast. The professionals and experts finally came to see what I had seen all along. I am a good judge. I don’t know if it is my academic training or my insecure nature in the social world, but if ever I hold something to be right and true I tend to search for reasons why I may be mistaken. It is the easiest thing in the world to believe the things you want to believe. I like to test myself and my views. Friends can drive me mad with their wishful thinking, and I in turn can drive them mad with my questioning and hopeful skepticism, making it seem as though my views are not only contrary to theirs, but contrary to the ones they believe me to hold.
“We contain the shapes of trees and the movement of rivers and stars within us.” Patrick Jasper Lee
We are stardust etc etc. I am 0% hippie. Such talk leaves me unmoved. I leave it for T-shirts. I have read autistic folk described as evolution’s casualties. To God, there are no casualties.
“Let’s give people with autism more opportunities to demonstrate what they feel, what they imagine, what comes naturally to them through humor and the language of sensory experience. As we learn more about autism, let’s not forget to learn from those with autism. There are poets walking among you and they have much to teach.” Chris Martin, Unrestricted Interest
True, but you don’t have to be a Dante to be appreciated. I can appreciate a comment like this, but I am leery of romanticizing and idealizing the condition. There may well be poets walking somewhere along the autism spectrum. I think I may qualify as a philosopher. I earned my spurs the normal way, the PhD, which is the hard way that was so many more times harder for me. If people think writing a PhD thesis is difficult, then consider writing one as an AS person. I must have written the equivalent of five theses. I have the ability, or the disability, of writing several passages when attempting to write just the one. I have much to teach, I’d say, but on much more than philosophy. I can teach people about what it is to be human. In comparison with that, philosophy, which Joad describes as ‘brain-breakingly difficult,’ is easy. But in teaching humanity, I would teach the lesson of humility. I steer well away from valuing people on the autism spectrum because they are potential poets and philosophers, scientists and mathematicians. So what? Really, so what? There are no grounds at all for valuing geniuses more highly than ‘ordinary’ folk, whether they are on the autism spectrum or not. And more to the point, I doubt that as a percentage there are more geniuses on the autism spectrum than there are among the neurotypical community. And it wouldn’t impress me even if there were. I don’t know the figures and haven’t searched for them. Because I don’t think they are important. It doesn’t make any difference when it comes to loving and cherishing human beings and valuing whatever contributions they make to society as a whole. People can only contribute something that is uniquely themselves, and it is that that is to be valued. And it is on that ethic, and not claims of outstanding world-changing levels of genius, that the case for neuro-diversity is to be made. In fact, I’d like to go back to the older meaning of genius, the idea that each person possesses a quality that is uniquely theirs, some spirit that is to be developed as part of their own distinct personhood. Everyone has their own unique genius.
Let’s value everyone:
“Within every child is a connection to one form or another and a potential waiting to be fulfilled.”
Dr. Stephen Mark Shore
I am much more concerned to value the differences that make each and every person unique, without having to weigh and rank them in terms of their importance to society. Weighing and ranking is entirely the wrong approach, which cannot but come to see some people as being more significant to others and hence more valuable and more worthy of consideration. Not all aspies and auties are geniuses, whether in art, poetry, mathematics, and philosophy, far from it. We can value geniuses as geniuses. But that leaves the status of the others unchanged, unrecognized, and unworthy. Each person in the world is a unique being with potential and, for that reason, has something to offer that is distinctively theirs, regardless of race, colour, creed, and disability. As a philosopher of genius (I jest; you see, I have a sense of humour), I see the beauty that is beheld by the eye, the divine beauty that Plato wrote of in The Symposium. I see that beauty, and I see it as lighting the path to truth and goodness and inviting the heart to follow. It is the supreme political category for that reason. In my philosophical work, I hold out the hope that others could come to see the beauty of the world through the eyes of my writing voice. If that makes sense. It makes complete sense to me. I looked at the expression ‘the eyes of my writing voice,’ to see if it could be better written. The answer is no. I see the world in pictures and patterns, I paint with words, you will see and hear me only through my writing voice.
“Showing kindness towards those who are different and embracing our imperfections as proof of our humanness is the remedy for fear.”
Emma Zurcher-Long of Emma’sHope Book
humility
“Be thankful for autism. God shines brightest in weakness, and it comes with strengths that enable us to fill certain job roles better than others would (a talent, if you will).”
Peter Lantz
“Low pitched notes really make me feel like love might be truly possible. High pitched notes make me feel like I could go crazy with pain and sadness. Great rhythms can make me feel like life is freedom.”
Jeremy Sicile-Kira
“Rather than healing our child of his developmental disability, God healed me of my spiritual disability.”
Diane Dokko
God, we ought to have known, is just an old song and dance man.
adaptation
“Since understanding and accommodation are outside of our locus of control, we can focus on our own coping mechanisms. This allows us to experience and process much more information and see patterns before others.”
Joe Biel
I like to make lists. I make lists of favourite things. I started to draw up a list of my five favourite songs, and it turned into over three hundred songs. I make all kinds of lists. My five favourite singers were all born in January. I never count Jacques Brel, though. Brel never appears in a list. Brel is on his own. There’s Brel and there’s everything and everyone else. Brel is human life as a whole, he’s the whole lot. I write lists of Brel songs, though. And Brel covers. And my Elvis lists stretch to infinity.
