by Guy Shahar
Published: 9th January, 2020
Guy Shahar asks whether there might be a more useful way to think about autism.
Autism is almost universally considered to be a neurological condition. However, I have been learning over recent months and years that while there is undoubtedly a very significant neurological element to it, autism is also a condition of the heart.
And I do not use the word “condition” in the traditional medical euphemistic sense to suggest “something wrong with you”, but simply literally, to refer to a particular state. We can each evaluate that state in our own way, once we understand what it is.
An Illustrative Story
My son, Daniel, was a joyful baby, enjoying our company and that of others. However, from about the age of 1, he started to withdraw from this way of being and from the interactions he had enjoyed, and became harder and harder to reach. The full story is available elsewhere (in the article, The Beautiful Reality of Autism, or our TED talk, or in more detail in our book).
Why exactly this happened, nobody can be sure. Some people think it was in his programming and therefore inevitable. Some think it was an experience that he must have undergone that he found to be too much. Some think it was his vaccines (the start of his withdrawal roughly co-incided with the second vaccine course he started). One psychotherapist suggested it might be some sort of post-traumatic stress reaction, though could not identify the root of it.
We do not have access to the why of it. What’s more important is what we can learn from it, and from what followed.
We were extremely fortunate to come across the Mifne Centre in Israel, which was the foundation stone of another turnaround in his life. We spent 3 transformative weeks there. Daniel arrived there in a state of constant anxiety, frequent distress, apparent disinterest in the world around him, and of complete inability to function anywhere near as expected at his age. He left a bright, happy, balanced, engaged toddler, keen to explore the world and enjoy shared time with his parents. It was a phenomenal change. When he was assessed for an autism diagnosis a few months later, he was judged to have jumped from what the professionals called “the severe end of the autism spectrum” to “the very high-functioning end”.
In the months and years that followed, we saw more of Daniel’s true personality coming to the fore. A real sense of wonder and joy, and a brilliant sense of humour. A painful sensitivity to the mildest harshness or violence, and to anyone else’s discomfort or inconvenience. A pure idealism and a yearning for a world of kindness and benevolence. When he eventually went to school, he was still a little different to the other children in his way of communicating, but more especially in his care and concern for others. If he saw another child upset, he would come home and lie on his bed worrying about them. His caring extended to plants and animals. If he saw a child scaring an animal or smacking the branches of a tree, he would automatically intervene. Any sort of cruelty – however insignificant an adult might judge it – was unbearable for him. And he decided to become vegan of his own accord (and insisted on a couple of journey’s to David Attenborough’s house to give him letters for clarification on this, both of which received replies, though we didn’t get to meet him).
Autism is Not What We Think It Is
This indicates that there was also much more to him in the period when he seemed to be “cut off” from us than we could have imagined. He was the same person at that time as he was later; he had the same extremely caring innate nature. But he never had the space to display or even connect to it when he was living in constant anxiety. Nobody would have.
It strongly suggests that autism is not what we think it is. It is commonly seen as a neurological impairment – a lack of ability in some areas – but that doesn’t ring true at all in our experience. The traits of kindness, gentle care, idealism, humour, inquiry and more seem to us to be very clearly great assets and strengths, and to be inherent in his autism.
Even in the years following Israel, when his communication was still a little different from that of others, we have to ask what was it that made it different? We did not accept that difficulty in communication is a “symptom” of autism, and we had the proof when we took him to certain Heartfulness meditation centres – environments that were completely safe from his point of view. There was only openness, full authenticity and universal inclusion; no possibility whatsoever of any unkindness. In such environments, he happily and naturally played with his peers and others in ways that nobody would have remarked as anything other than perfectly natural. He was open, eager to connect and form bonds and deeply joyful at the opportunity to do so.
In the environment of a British mainstream school, where he didn’t feel such safety and was constantly at risk of being knocked off balance by the next unkind joke or act, he didn’t feel safe to be himself and show himself. None of us would if we were in an equivalent environment that made us feel unsafe.
Again, it raises the question of whether this kindness, idealism and gentleness might be a more useful and accurate definition of autism than the prevailing disabling one. Our TED talk, which proposes this way of looking at autism, has resonated extremely deeply with very many autistic people, suggesting a strong instinctive recognition of this firmly heart-based sensitive inner-nature amongst autists themselves.
And if this is the case, it gives us a strong pointer as to how we need to treat autistic children. Our charity has always advocated an approach based on creating safe environments around them and strong, nourishing trust-based relationships with them as the surest way of unlocking this potential within. We have seen in our own experience that when this is done, a child can truly flourish and show more and more glimpses of the unsuspected beauty that was always within them but which didn’t feel safe enough to emerge.
Daniel didn’t suddenly “jump” from one end to the other of an imaginary line representing what some call “low-functioning” to “high-functioning”. The improvements in his ease of functioning was purely a result of the impediments being removed.
Imagine what we could create if the same impediments could be removed for all autistic children.
A Sad Reinforcement
This is reinforced by something very unfortunate that happened in 2017. My son’s differences in communication led to ongoing low-level bullying at his school. It was subtle enough to be dismissed by the staff as the normal cut and thrust of life, but potent enough to have a profound and lasting effect on him.
He, and we, went through the same devastating experience as during his previous regression. We watched as he became increasing withdrawn again, obviously in real pain but increasingly trapped within himself so it was not possible for us to effectively soothe it. He totally lost his orientation, appearing lost much of the time, shed the academic abilities that he had worked so hard to have access to, and developed long-lasting and debilitating new fears and anxieties.
After a long process, we switched him to an autism school in 2018. Given fresh hope by the safer environment there, he slowly began to rediscover himself, his abilities, his joy and inner-goodness. The fears receded, though he still has to fight the tendency to create new ones and lives with much more ongoing low-level anxiety and restlessness than was the case before.
During that worst period in 2017-18, and to some extent still now, many people found his condition to be “typically autistic”. But this is only typical because so few autistic children are recognised for their true nature and encouraged to discover and exhibit it, and because so few parents get the opportunity to be exposed to an understanding of how to truly support and get the most out of their autistic children. We knew that this new insular condition wasn’t his condition; it was the condition of a sensitive person who had been pushed beyond the limits of their ability to tolerate.
Even now, his aversion to change, for example, is much stronger during times of stress. When things are more settled and calm, he is a creative pioneer, enthusiastically embracing new ways of doing things. It’s a strong testament to the importance of the environment and its safety in outcomes for autistic children.
There are specific ways in which autistic people commonly tend to manifest this stress, which does point to there being an inherent neurological element to autism. But this outcome is not inevitable. If an autistic child is given a safe environment, there is no need to manifest stress at all. The “typically autistic” behaviours are only so common because the prevailing cultural environment is suited to a different neurological type. If non-autistic people were forced to live in an environment that was constantly stressful and demanding for them, would it make sense to say that their resultant stressful behaviour was “typically non-autistic”?
The experience that my son had of being bullied can only be described as traumatic, and the anxiety that resulted from it can only be described as post-traumatic stress. Sadly, this is extremely common in autistic people brought up in a non-autistic culture. Because of our good fortune early in his life, he was able to experience some of his early years free of this anxiety, and this has hopefully given him a foundation to eventually transcend it. It has also demonstrated that in optimal conditions, the prospects for autistic children are very different from what is often assumed.
The gifts that an autistic person brings come with a price, and in this case, sensitivity is both the gift and the price.
It is sad that in such situations the withdrawal and other developments are most commonly assumed to be aspects of autism, rather than of the stress they have been subjected to, while the underlying sensitivity and continued good-will and good-nature in the face of this stress are not seen as being associated with autism; that’s if they’re even noticed at all.
It is also true that autism – like any human categorisation – is a spectrum. There will be some people who react to stress in ways that are more urgent and appear more controlling than others. They can also learn and imitate forms of expression from the prevailing culture. So, autism might not always look like a condition of the heart if we only see the surface. That’s why a light needs to be shone on what’s going on underneath.
That way, perhaps we can work towards creating the conditions in which autistic children can really thrive from an early age, and we can all benefit from (and be astonished by) the possibilities they can bring.
A psychotherapist friend of mine told me that she’d had a couple of clients referred to her because they were perceived to have no drive or ambition in life, and she was asked to get to the root of the problem. She found that they had both had extremely loving childhoods, and as a result, had very high self-esteem and didn’t feel they had anything to prove, and so appeared to lack motivation, at least in the way it was expected to be demonstrated.
What can we learn from this very simple story (and what’s it got to do with autism)?
Firstly, it turns the original premise of the referral on its head. The clients had been perceived to be the problem, while others who are more driven were considered the healthy norm. It turned out that while they may have appeared to be the ones with the problem, they were actually psychologically extremely healthy. By implication, more driven people may appear to be strong and sorted, yet it may well be their own lack of self esteem – and their impulse to try to seek external validation through success and achievement in a vain attempt to make up for this – that gives them their drive. This reminds us that our initial evaluations of others can sometimes be completely incorrect.
Second, even though these clients had the sort of psychological condition that we would all aspire to have and which we would consider extremely positive, this world is not designed for them. Our cultural values venerate and reward those who are trying to compensate for a self-esteem problem with external achievements. They demand the same compensating behaviours from those with nothing to prove, rather than adapting to and offering different motivating factors that might work much better for them. When these people are not able to respond as expected to these demands, they are seen as inadequate, and our perceptions of who is healthy and who has a problem are reversed.
The parallels with our perceptions of autistic people are obvious. Autists are considered disabled for not thriving in a fear-based competitive society where being open about what is within us is felt to be a deeply uncomfortable weakness and where putting the concerns of others on a par with our own is feared to expose us to danger. Because they are unable to enthusiastically participate as expected in the sort of unkind humour and harsh interactions that characterise society, and to pursue their expected ambitions with uncompromising ruthless determination, it is assumed that there is something wrong with them. An evaluation is made of them that takes no account of their true nature, and no consideration is made of the sorts of interaction that would be optimal for them, and would allow them to bring out the best in themselves on their own terms.
We have explored what this “best in themselves” consists of – a bold, pure, idealistic nature with natural kindness, respect and active, determined concern for others’ wellbeing, even a potential for strong ego-free leadership. These heart-centred attributes are not disabling features except in a society that is proudly based on the lack of them. While our society is currently suffering enormously from this lack, the potential of autistic people to solve the problem – indeed to form the new foundations of an evolving society– is almost never even alluded to, except in the most tokenistic ways.
Autism is still widely judged as disability because those evaluating it put their focus purely on how successfully autistic people fit in with prevailing societal norms. Little attention is given to their underlying nature and to the tremendous potential they are able to bring to the world – and to transform those societal norms – through what is in their hearts.
Let’s play whatever small role we can in reversing this devastating mis-perception.
Transforming Autism is a new UK Registered Charity (1173134) dedicated to the very best and most effective early intervention to relieve anxiety, provide affirmation and understanding and create a very strong foundation for the future for autistic children. We’re raising money to launch our first face-to-face services. You can find out more about them here, or click here to make a donation to help make them possible.