AUTISM ACCEPTANCE
I had the following text as a pinned post on Facebook to promote an understanding of autism. I thought it would be educational. It's difficult to say how successful the post was in its ambition. I included some fifty memes with explanations. Just eight people gave the post a 'like.' In my judgement, the people who stand most in need of education won't read and won't be told, making such general statements somewhat redundant. I was surprised at how little understanding certain people showed, as they continued to say and do things that contradicted the information and advice contained in the pinned post. Despite the concise explanations alongside the memes, they would persist in claiming 'we're all on the spectrum,' 'I'm a little bit autistic,' etc. So they were either not reading or not understanding. Rather than blame the ignorance of others, I tend to see it as a failure in education and communication. General appeals to anonymous or abstract others simply isn't effective, for the reason it is remote and passive. People need to be actively involved to be motivated to learn. There is no substitute for a continuous exchange of information in reiterated encounter, most especially in proximal relations. The lengthier the lines of communication, the thinner the learning experience.
So I unpinned my post. The people who responded most positively to the various learning points were already amenable to the message. Those most in need of reading and understanding the materials were the ones least inclined to read and less able to understand. I have no idea what you can do with such people, other than avoid them as a menace to your peace of mind. They won't make the effort at reading the information you provide, and resent being told anything. It will take a societal change as a whole, spearheaded by those paying attention, to drag them along in the undertow. Which returns to my point about the need for reiterated encounter between people who know one another within proximal relations. And that underlines the need for extensive social relations as being of the highest importance.
Here is the text that accompanied my pinned post on Autism Acceptance:
A post in furtherance of Autism Acceptance. There are fifty memes here (some of which I have created myself, with more added in the comments section), to which I've attached some thoughts and observations for purposes of education, enlightenment, and entertainment (a sense of humour always helps). Whilst there's a lot of material to absorb here, I would encourage you to make the effort. If you think this is too deep a dive, I can tell you that it barely scrapes the surface. And that 'society' needs to listen and learn some lessons.
I post in light of the positive interest generated by Chris Packham's “Inside Our Autistic Minds” on the BBC. I have been arguing for some time now not merely for autism awareness but above all for Autism Acceptance.
I have been giving this issue close personal attention since 2019, with all my customary focus. I shall temper my words and simply say that the lack of understanding, help, and support for autistic people I have discovered these past few years is a disgrace, condemning individuals to living lives that fall far short of their potentials, trashing their hopes and dreams, and diminishing their aspirations. In losing the uniquely creative contributions autistic people can make when socially supported, society, too, is much less than it is capable of being. The truly annoying thing is that the changes needed are, in many respects, small relative to the huge gains they would produce.
I shall quote from a recent exchange I had with the professionals who handled my diagnosis in 2021. After over a year of running into brick walls I returned to ask them about available support networks and help for autistic people. This was the response: “I am sad to say that there is very little in terms of post diagnostic or any kind of autism support.”
That's the hard truth I have discovered through wasted time and energy in the first year following diagnosis. In fact, I discovered even that "very little" to be a wild exaggeration, meaning "next to nothing" in practice. You receive advice on how best to help yourself - nearly all of which autistic people are already doing, because they have to to simply survive. You just learn to do it all better, accessing the right information with greater self-knowledge. Given that you are pretty much on your own, that gaining in insight is not to be sniffed at. If 'society' is going to continue to hinder you rather than help you, it is good to know how best to help yourself.
Had I been told this hard truth from the very start it would have saved me the precious time and energy I wasted pursuing the leads and links on the last pages of my AS Report, in the hope of a help and support that simply isn't there. False promises are debilitating, raising your expectations only to dash them over time. It is no wonder that the euphoria of diagnosis is repeatedly followed by depression. The honest truth, however brutal, is best. I wonder whether professionals and organisations keep it hid, lest people conclude that diagnosis, and the professional process that goes with it, are a waste of time.
I recently took part in a survey of post-diagnosis experience. The researcher wanted to know how useful the information and links provided at the back of the AS Report were. Every single person commenting said the same thing with respect to the social implications and applications – the information and links were worse than useless in that they wasted people's time and energy in pursuit of false expectations of help. There is no help and support beyond advice and guidance with respect to self-education and self-help – the things you can do for yourself and which cost 'society' nothing in terms of effort and resources. Everyone said the reports should tell people bluntly that they are on their own and have to help themselves as best they can (if they can ..) and prepare to fight every step of the way (if they still have the energy after a lifetime of fighting ..,). Because there is nothing. It's better to tell the brutal truth – you are on your own spitting into the wind. In the very least, such searing honesty will strip 'society' of its caring mask, that comforting self-image which reassures those happy to be reassured that help is being given, when it isn't.
There are tiny little groups here and there, on the ground, run by volunteers and autistic people themselves. The National Autism Society also offers useful resources to explore and adapt. But the accent is on the things you do for yourself - there is zero change in external reality, which is precisely where the problem lies and where autistic people require changes to be made (I was told that disability is an excuse not to work. Tell a blind person to go and count seals off the Orme, I replied, to no response. It is no more than "reasonable adjustments" that are often required - except I was told that the adjustments recommended at the back of the Report are actually so "reasonable" as to make no real difference at all. If you suffer from sensory overwhelm, for instance, no amount of practice or experience will equip you for certain jobs (most jobs, it seems). This is just ignored by the insistence that you make yourself fit for work. "We could all do with some of that," were the callous words spoken by one employment advisers, when she finally got round to reading the recommendations at the back of my AS Report. I should have known there and then that the promise of changes for the better contained in the Report weren't worth the paper they were written on.
I've been in touch with the Integrated Autism Society. I was offered a laminated communication card to present to people, on the assumption that I struggle with communication (I don't), a bicycle club to join (I can't ride a bike), a photography club miles away (zero interest), and some phone number in case of mental health issues, which told me how little hope they had in the other help and advice they offered. I broke off contact whilst relations were still cordial. I dare say they are doing their very best with the limited resources at their disposal.
In the end, there is never any substitute for proximal communities of mutual aid, solidarity, and practice - friends and families who socialize existence and power the good life from the bottom up. Sadly, autistic people can tend to become isolated and apart, leaving them reliant on the help and support of external bodies. One of my most favourite proverbs is one that I read in Dumas' "Three Musketeers" when young: "the most beautiful woman in the world can give only what she has." The organisations and bodies of the external order are much less than beautiful, and it's wise to learn the lesson of how little they have to offer rather than misplacing hope and wasting valuable time and energy in expectation of something which, if much less than beautiful, may be a little bit more than ugly. It depends how resourceful you are at making use of "very little." Which is to say, it depends on how resourceful you are. Self-knowledge and self-help, then. You have to rely on yourself when you are alone.
There is no extensive support network and nothing like the societal cooperation that is required if the unique talents of autistic people are to flourish.
One employment adviser I contacted/confronted this past year put the point this way: if an employer is presented with two CVs, one which asks for "reasonable adjustments" to be made before a person is able to do the job and one which doesn't, the employer will choose the latter every time. Whilst that might seem like a statement of the obvious, it still comes as a shock to those who think diagnosis gives them some kind of legal or official priority as a special case. That the woman has an autistic son told me that her words were neither callous nor indifferent, simply the statement of a harsh truth - she knows the situation well, and knows how worthless words on paper - and on lips - are. I should have known. Like many autistic people, I long ago learned not to take either individuals or institutions by their self-image, but to judge by deeds and their effects rather than by words. It's been disappointing to see, in light of diagnosis, how many people who feign sympathy and empathy in public continue to say and do things that hinder, restrict, and obstruct autistic people, and remain oblivious to the harm they do. They see themselves as nice and kind and won't be told otherwise.
The solution is some form of adapted employment which offers people with certain abilities and certain challenges a way in. There is nothing. You are left doing as much as you can do for yourself. Then it's all down to luck. And in a world of asymmetries in power and resources, some people are a whole lot luckier than others.
The upshot is that you are told to mask and mirror your authentic being, and to accommodate and reconcile yourself to a much less than authentic world and its demands; and to internalise all the stress and strain that goes with having to make such an effort, with whatever consequences for physical and mental health. It is no wonder that the Office for National Statistics (ONS) shows just 22% of autistic adults are in any kind of employment, let alone full-time employment. This is a shocking figure. Not only does it represent a huge loss of talent for society, most of all it is a personal tragedy for the people affected, for autistic people and their families. Think about how much frustration and unhappiness is being channelled into society as a result.
The figures get worse. Research by the National Autistic Society found that 71% of autistic adults don't get the care they need. Without support their lives get harder and harder, with the result that too many end up being admitted to a mental health hospital or with chronic health conditions.
Making the effort and taking the time to create a society that truly works for autistic people, (and for all people for that matter, given the unity of each and all in a truly human society), cannot come soon enough.
The power of neurodiversity? Very possibly, but only in the right circumstances, circumstances that are rarely found, because too few are making the effort to create them and sustain them. Those circumstances are not found in a society that has you wasting your time, talents, and energies constantly negotiating obstacles, jumping hurdles, and climbing mountains simply to survive another day. Not to mention running into brick walls that could care less. In tray, out tray, job done. Dealing with place-sitting functionaries in the institutional world is like talking to a job description. It is wise to see through false promise and not entertain false hopes and learn how little some people have to offer.
On my website I promote Autism Acceptance rather than Autism Awareness. Awareness in itself is neither understanding nor the change of behaviour on the part of ‘society’ - particular others and institutions - that is required. The education, advice, and information presented has the autistic person making all the changes and ‘society’ none. That has to change.
It is a national scandal that conceals countless unseen and unheard personal tragedies. On my website I write of "The Silent Sorrow of Unraised and Unheard voices." I'm vocal ... in my "writing voice." Whether my voice is heard depends on people reading, understanding, and, importantly, changing their behaviour should changes be required. And here I have grave doubts with respect to the efficacy of general statements and appeals. They are passive and abstract, whereas real change requires the involvement of people, a genuine engagement in society. The educational or enlightenment model is based on the idea of filling empty heads with information. It's a passive process in which the recipients are not actively engaged, with the result that little of the information sticks. But in the absence of extensive social links and connections, resort to the educational model is inevitable.
It is also important to bear in mind the dangers of universalising experience. Each autistic person is very different. I speak for myself, in awareness that there are certain common traits as well as much contrariness. The field is packed with exceptions (and "oddballs"). The professionals have a difficult challenge on their hands. The nice lady who assessed me told me afterwards that, after long experience, she gets a good sense within a few seconds of meeting someone, even before any questions are asked and answers given. To those who say it is all merely subjective as in "made-up" and "non-existent," open your eyes and ears, learn some lessons, and make some changes. There is no objective criteria involved, which means that diagnosis is a judgement call in light of behaviour and experience. (It should be no surprise that I value practical knowledge as highly as I do, arguing constantly for the need to bridge the gap between theoretical reason and practical reason). Allowing a person with a hidden 'disability' to struggle socially or academically when all that is needed for success are appropriate and eminently reasonable adjustments is no different than failing to provide a ramp for a person with a wheelchair. More often than not, said 'disability' is a deficiency on the part of 'society' - the people who live in society, and who have concerns and priorities of their own, and not much time and energy to spare for difficult issues. We live in a reductionist culture that struggles to see the invisible and touch the intangible. It's time people ceased outsourcing conscience and responsibility and made the effort to see and reach out.
It's all about different ways of thinking and doing. I have always had to take a unique, usually indirect and roundabout, approach to tasks, for the reason that nothing clicks straight away for me. I struggle with left and right. Whenever there is a 50-50 call to make, I do tend to make the call on the 'wrong' side. I'm very uncanny and unerring in my contrarian ways. I get things done, eventually, but people don't see the immense effort it takes on my part. It's tiring.
I like this quote from Alfred D. Souza:
"For a long time it had seemed to me that life was about to begin - real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, or a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life."
Obstacles, barriers, difficulties, frustrations, blindspots, missed opportunities, and much more besides. But there are many gifts, too. I've never been afflicted with cynicism and sarcasm. It sails right past me, as being of no importance whatsoever. I'm unimpressed by 'cleverness,' too. I've met many very clever people who, frankly, I wouldn't send out for a loaf.
I like to cut to the core, to the heart of the matter. Different doesn't mean better, in the same way it doesn't mean worse. It all depends. I like to get to work on a task, and focus with total energy and commitment.
Be a first-rate version of who you are, not a second-rate version of someone else.
“If you’ve met one person with autism, you’ve met one person with autism.” - Dr. Stephen Shore
It's important to listen to multiple autistic voices. I am one unique voice among many unique voices. It's important, too, to understand that autistic 'voices' are heard in many ways. I approach the world in my 'writing voice.' You will read my words much more than you will hear them. No one voice is able to encompass the whole experience of autistic people. Autistic traits present very differently in each autistic person. I encourage you to explore multiple autistic accounts.
My website:
Irreducibly Polynomial
Autism Acceptance
Insights, Disclosures, and Warnings from the Strange Frontiers
This website is dedicated to promoting and supporting autism awareness, understanding, and acceptance.
