The Lived Experience Of Autism

by Guy Shahar

Published:  6th September, 2019

This is a slightly different article from usual and elaborates on a talk given by the author at a panel on this theme at the Hay Festival, 2019.

This article is based in part on my own experience, but also draws on and chimes closely with that of many other autistic people.

My own autism was confirmed only last year, at the age of 46, so I have been living an autistic life for the vast majority of my existence without knowing it.  However, it makes a lot of sense of many of the themes in my life.

The real lived experience of autism is well-concealed from the world.  I recently saw this cartoon from The Art Of Autism showing what often happens to so-called “high functioning” autistic people, who look “normal” to others’ eyes who see them as “not very autistic”.  It shows how they can therefore be overloaded by others’ expectations and criticised for not meeting them in the expected ways, until they are overwhelmed and then people suddenly think “Woah, you’re more autistic than I thought” and that they’re not actually capable of much after all.

As my own autism has been unknown, I have often been thought of (including by myself) as “weird” or “strange” rather than “more autistic than I thought”, but it’s essentially the same thing.

The Costs of Conforming

When autistic people are doing “normal” and especially higher-profile things that involve more responsibility, their role in life is generally observed without any major fanfare by others, as it fits in perfectly well with prevailing expectations of what life should be about. 

However, what is not seen is the cost to the autistic person of moulding themselves to function according to those expectations, as these are often not their own natural or preferred ways of being.

The challenges come in very many forms.  Amongst them are:

  • Misunderstandings – Because of differences in ways of expressing ourselves, our intentions can easily be misunderstood and we can be mistakenly seen as being judgemental or challenging; or what we offer as respectful honesty or openness can be mistaken for rudeness. This can lead to hostile reactions and complications in mutual understanding.  Or it might be more subtle: in the same way as autistic people can often have difficulty with conventional social cues, non-autistic people can have difficulty with cues used and understood by autistic people.  So even if you are really open to connecting with someone or they are really open to connecting with you – or both – the connection often does not happen because of this.  Or, if you want to get on at work, your efforts and intentions may not be registered for the same reason, and your abilities may never be recognised or utilised.
  • The Social Instinct – It is such a common experience amongst autistic people to be able to make a great and confident contribution in a structured formal setting, for example, at a work meeting – where the means of contribution is obvious – but then to become uncertain and disoriented when there is a break and the conversation turns to sport or politics or holidays or family or other small talk. I think this uncertainty comes from a long history of the sorts of misunderstandings described above.  It is not that autistic people do not want social contact – often it is quite the opposite – but their experience can bring a sense of inevitability that things will not work out as envisaged, which can lead to a “rabbit in the headlights” feeling of discomfort and confusion, which can result either in blurting out something that is considered totally inappropriate, or in withdrawing from the social situation altogether.  This, in turn, can easily be mistaken as rudeness or disinterest or cold detachment, when it is no such thing.  The resultant awkwardness leads to an ever more entrenched social anxiety, which fuels more “inappropriate” responses or withdrawal and deepens the cycle.  It means that a real sense of community, which an autistic person craves as much as anybody else, can often remain out of reach and unfulfilled.
  • Networking – Seen as the ultimate means to success, this can be not only intensively draining for autistic people (many of whom are naturally introverted), but we’re also not that successful at it (at least in its conventional forms) for the reasons outlined above.
  • Meaning – It is so much harder for autistic people to put their energy into something when they can’t connect to the meaning of it. A role in sales, for example – where the measure of success is selling people things that they probably don’t need and which necessitate the unnecessary expenditure of natural or human resources when those resources could be otherwise put to more beneficial use; and where the ultimate result of the work is to make money for people who don’t need it and to get a bonus for yourself – is unlikely to hold any attraction whatsoever to an autistic person, who is more interested in making a meaningful and positive contribution to the world and leaving it a better place at the end of each day than it was at the start. 
  • Knockbacks – These are inevitable in any situation – more so as responsibility increases – and an inevitable part of the fabric of human life. What is not generally appreciated and rarely even glimpsed is that such knockbacks can be experienced in a far more devastating way by people with autism.  Others may or may not notice that a difficult situation has passed and that things then go back to normal.  They will rarely have any idea how deeply the autistic person has been shaken by it, and they will be unlikely to have noticed that they may have disappeared from view for days having been unable to focus productively on anything during that time.  It is a shock, not necessarily based on emotions or negative beliefs or self-criticism or anything like that, but rather on having been overwhelmed by the nature or intensity of what has happened. 
  • Sensitivity – It is not only knockbacks that can lead to overwhelm. Sensory sensitivity in autism is well-recognised, but emotional sensitivity is also very common, as is what I call cognitive sensitivity, with the mind very easily overstimulated and unable to settle as a result of things that others may not think of as remarkable at all.  It means there’s not much opportunity in life for relaxation or respite.

What does this Mean?

All of this means that any achievements that autistic people make – however apparently mundane – need to be achieved despite these and many other challenges, and need to take place over and above the tremendous effort required to surmount them – a huge accomplishment in itself.

It is likely to result in a state of being often drained, requiring more time alone to begin a recovery process and having little energy left for other things, and therefore being deprived of a reasonable, or in some cases even a tolerable, quality of life.  Additional effort is then required to catch up, which puts respite even further from reach.  Long-term health is inevitably affected.  It is well-know that life-expectancy amongst autistic people is significantly lower than for the non-autistic population, more than 15 years lower according to a recent Swedish study and much lower even than that for people with so called “low-functioning” autism.

The difficulty is likely to be more profound after a particularly intense or challenging period of life, after which there may well be a greater reluctance to re-engage with mainstream activities, and it may then be harder to get back even to how things were before.  And undiagnosed autistic people may be even more susceptible to this, not having the context to understand what is going on or how best to proceed.

And all of this goes unseen and unsuspected by an overwhelming proportion of non-autistic people, who see “high functioning” autistic people behaving reasonably according to their expectations of how people should behave and doing the normally expected things, and assume that everything is probably fine then.

I remember at the age of 25 observing with some detachment that I would be unlikely to make it to 40.  I was almost certainly on that trajectory.  In my case, the discovery of Heartfulness meditation gave me the inner-resources and orientation to be able to avoid that (and to provide me with an unimaginably beautiful backdrop to life).  The more recent discovery of a couple of effective health and dietary interventions have also played their part.  The challenges remain and continue to take a good share of their toll, but the worst of the consequences can now be avoided.  But I am lucky.  Many are not.

The Difficulties of Being “High Functioning”

So the label “High Functioning” has its limitations.  It can indicate that there is the possibility to conform to a certain extent to societal expectations, but it masks the costs of doing so and avoids the question of whether it is optimal or desirable, or even sensible, to do so.

As a result, the autistic person often has an uncertain path through life, and this is exacerbated by the greatest social expectation of all, to “earn” a living through work.

They may be ill-equipped for a regular job.  My own experience, and I have often heard something like this reflected in others, is that I spent many years drifting from role to role – usually part time so that I wasn’t overwhelmed by the physical and cultural working environment.  When this was no longer financially feasible, I changed course and joined a multi-national corporation, where I just about survived for 8 years only because I was wholly responsible for my own time and was able to work from home for about two thirds of my time over that period.  When I moved from there to a local company which required me to work onsite at a desk in a claustrophobic and toxic environment, my health underwent a total collapse within months, and I became housebound for many weeks,  These environmental factors (the competitive working culture, the lack of meaning in the work or any real sense of community, the noise in the office, the nature of much of the activity, the heating or air-conditioning and much more), often unnoticed by non-autistic people, can take a huge toll on autistic people.

So, a conventional life of work can be unavailable to an autistic person, at least for any significant length of time.  But as there is no recognition of the impossibility of this sort of life – especially for people who are undiagnosed and may even be unaware that they have autism – there is also no allowance made for it and no provision for them to follow any alternative lifestyle. They are left to take responsibility for their own financial situation.  Some may drift from part-time job to part-time job for their whole lives, or find something to start a small business doing, scraping a living if they are lucky, looked down on by others for not “making more” of their lives.  A few may be lucky enough to find work in an appropriate environment doing what happens to coincide with what they love, but this is a rare occurrence.

The result is a life with little chance of the lightness and happiness that others at least have a chance of, often with serious health and mental health issues to accompany this.  It is sobering to remember that only one in 6 autistic adults is in full time work, and less than a third is in any sort of paid work at all.

Is Autism the Problem?

You may be forgiven, having read to this point, for feeling sorry for those unfortunate to be afflicted with a condition that causes such hardship.  But it does not.  The situation I have described is not due to autism, it is due to the incompatible environment in which autistic people are required to live.

It would be no different for anybody if placed in a sub-optimal environment. 

I often invite people to imagine being forced to move to live permanently in a town where loud aggressive music was pumped into the streets 24 hours a day, where everyone was scornful and confrontational even with their friends and family, where strangers would yell violently at each other and smack or slap each other unpredictably, where knife fights were very common and the streets were punctuated with the corpses of victims, where even within homes, suspicion, rivalry and aggression reigned.  How long would it be before any of us, autistic or not, would have similar challenges attempting to fit in with life in those towns, with similar health implications and a similar inability to manifest the best of their potential?  The only difference is in what exactly makes an environment suboptimal.

On the issue of employment, there is a growing voice calling for greater understanding of autism amongst employers (the NAS has been running this powerful campaign) so that they might understand how to get the best out of an autistic person during an interview, recognise what they can bring and create a working environment that is more tolerable to them, including general awareness amongst everyone else and the possibility of some remote working.

This is valuable and clearly has its place, but as a sole strategy, it only re-inforces what many autistic people feel to be an imposition of the expectation to fit into a conventional life framework.  It seems to come from a pervading anxiety to get the most value out of each member of society, with “value” being measured in terms of financial profitability and based on an assumption that the more hours worked, the greater the productivity.

If this is what value means, then autistic people as a whole will always fall short, as they are rarely, if ever, ultimately driven by such values of material abundance.

Anyway, it is counter-productive.  We have talked of the additional space that autistic people generally need to function well, and so requiring them to fit into a conventional lifestyle – even with environmental adaptations – would be equivalent to requiring many hours of additional work from a non-autistic person so that they were sleep deprived and continually exhausted.  There is a point (for anyone) beyond which more hours and less autonomy cannot possibly lead to a greater contribution.

Are There Any Alternatives?

But if we could define value more broadly and allow for neurodiversity, wouldn’t it make sense to structure a system that allowed autistic people, and ideally some others too, the opportunity to contribute in a way that fits their capability to make the best contribution?  An autistic person may work better immersing themselves in intensive work for short periods; another may work best having certain blocks of time to work to or to be able to identify for themselves on an ongoing basis the times that feel optimal for work.  Some may like very clear direction from others so it is clear what they need to do; others might need much greater autonomy to engage on their own terms and in their own time.  And if any of these is what it takes to get true value from any individual in a way that also makes them feel positive about their contribution, doesn’t it make sense to find a way to make that possible? 

It might be that after an apparently minimal contribution (as conventionally measured) over a number of years, that person may generate a great breakthrough in how something can be done, or a ground-breaking philosophical or economic idea, or beautiful music or art or literature that changes others’ lives, or a landmark scientific discovery or solution to a social problem, or – more commonly – simply live in a way that sets an example and quietly inspires others to bring out the best in themselves.  Wouldn’t that be more than worthwhile?  Or would it be of greater value to society if they instead spent that time burning themselves out trying to persuade as many people as possible to switch from one mobile phone network to another in return for a modest commission?  Currently, only one of those models is validated and facilitated by our culture.

So, what’s Actually Going on with Autism?

Autism is not an impairment.  At Transforming Autism, we propose a distinctive and positive conception of autism, and emphasis the role of sensitivity – not just on the well-recognised sensory level, but on an emotional level too, with an acute degree of emotional perceptiveness and empathy being far more common amongst autistic people than is commonly recognised from a superficial observation of behaviour.  We also see a high degree of idealism often inherent in the condition.  This is outlined in our TED talk and in many of our articles.  There is a tremendous amount that beings with such qualities can bring to the world.  They could be huge assets.

The problem comes when people with such sensitivity and its associated potential are forced to live in an environment that they experience to be as harsh as non-autistic people might find the town I described.  From the earliest age, their energies are expended trying to find ways to cope with what they experience as coldness and violence in others’ behaviour and intentions (which they are very well-tuned into).  Over time, as this happens again and again, it develops into a form of trauma which is easily triggered later as a post-traumatic stress reaction at the slightest provocation as painful memories re-emerge of how past situations have turned out and panic ensues at the fear of repetition.  This explains many of the supposedly strange behaviours of autistic people, including the apparent lack of social awareness, which is in fact a form of unconscious self-protection from the inevitable amplified pains of interpersonal interactions in a culture of fear, where selfishness and competitiveness can suddenly assert themselves at any moment and where paramount importance is placed on the observation of abstract social rituals in which autistic people can’t easily find meaning.

Why is this Self-Protection Necessary?

There is nothing exclusively autistic about the tendency to self-protect.  All humans (like other species) have been conditioned by millions of years of frequent food scarcity to fight for their place in the pecking order and to fear the potentially catastrophic consequences of losing it.

Some try to protect themselves from this by seeking power and domination to try to make themselves important enough to remain at the front of the queue.  Many others by interacting in a friendly and co-operative way, but retaining  some degree of inner-distance so that it’s not so difficult if they ever feel under threat and need to suddenly defend themselves against the other person, or so that they can avoid intense pain if others do so to them.  More sensitive people have more difficulty coping with this sort of environment.

My sense is that this is far more difficult for autistic people because autism comes with a profound (and unavoidable) underlying assumption and feeling of interconnectedness.  So, while the same fears may be triggered in autistic people as in everybody else, they cannot respond by selectively distancing from others.  Therefore, when someone turns against them or is unkind to them (or to anyone else) the experience can be far more painful, confusing and utterly devastating.  It is also totally counter-intuitive to have to protect themselves in such a way, though some may end up adopting similar means to others out of a perceived necessity or as a result of being completely overwhelmed.

There is therefore little prospect of securing what would be experienced as safe and nourishing relationships.  So, many autistic people end up avoiding much social interaction at all.

It is an irony that the prevailing culture gives an outward appearance of being open and connected whilst inwardly retaining the option of disconnecting; whereas autism can often give an appearance of being closed and distant while inwardly being unavoidably, involuntarily firmly connected.  The autistic heart is always open.

Imagine what sort of a world could be created if this sense of interconnectedness were the norm.  We would have the social foundations to avoid any sort of confrontation and to finally transcend a fear-based world.  It could be seen as a significant evolutionary step.

The Possibilities

So, now imagine a different town – one which is designed for autistic people: not for autistic adults like me, who have already been shaped by life in this world, but one in which each person experiences from birth an environment which is optimally tuned for them.  Imagine what they would be able to bring with their heightened perceptions, empathy and idealism without the need to expend the best of their energies trying to recover from unnecessary assaults on their senses and values.  Nobody visiting such a place and seeing them in action would think of them as disabled in any way – rather they would be inspired by what they had achieved and by what learning they could take away from there.

That’s why Transforming Autism is so focused on very early intervention – not intervention in the sense of changing the person into what we require them to be – but in the sense of providing a safe and nourishing environment so that they avoid the early years of frustration where the trauma builds most and have a real chance of going on to develop much more of their full potential.

My own son went to the Mifne Centre in Israel (which we aim to bring to the UK as soon as we are able), and it allowed us to see unsuspected purity, idealism and open-heartedness in him, after more than a year of his apparently being totally shut down.  It totally transformed his life.  He went at a slightly later age than the Centre now serves, and he still needs to live in this world that gives him more than his fair share of challenges to deal with, but he also spends much of his time far happier and more connected than could have been imaginable before we went, and his future potential to live a fulfilled life is infinitely greater than it was.

Our vision is for the opening out of this potential for happiness and fulfilment in all ways to be the norm for as many autistic children as possible from as young an age as possible.

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