The Beautiful Reality of Autism 4


by Guy Shahar

Published: 24th November, 2016

This is the article on which my recent TED talk was based (you can watch the video here).  It is a development and extension of the article, What is Autism, Really?, and represents the conceptual backbone of The Transforming Autism Project.

Autism is a lifelong disability whereby the affected person lacks the natural ability to interact with others, and suffers from various sensory issues. At least that’s what we were told, and like most parents of autistic children, we believed it, until our experience showed us otherwise.

A couple of months after turning one, our son Daniel started to exhibit some unusual behaviours. He started to forget the words he had learnt, and one of the first things we noticed was that he would start to let food he had been chewing fall out of his mouth. We were concerned, but didn’t think too much about it. Then he started to become more passive, and gradually spent more time staring into space. We thought this was cute at first and that he was being reflective, but it soon evolved into withdrawal – noticeably less engagement with us, until we could barely get any response from him at all. By the age of one and a half, he spent most of his time lying on the floor rolling a toy car backwards and forwards, resenting any attempts to communicate with him, especially if we used his name – he would growl in protest without turning around, and carry on rolling his car. Soon, we didn’t even get any eye-contact anymore. He lost the ability even to make clear consonant sounds or feed himself or process solid food (we had to go back to puréeing everything and spoon-feeding him again, and even then he would only take it if we distracted him with cartoons). And he became prone to intense and prolonged meltdowns at the slightest setback – there was nothing we could do to console him. It was totally distressing – especially when he resorted to hurting himself in frustration.

It was a clear case of regressive autism, but the doctors told us that all children have their own development path and we shouldn’t worry about this until he was at least 3 years old. I can’t imagine how we could have just carried on without worrying for a year and a half more. After a lot of exhausting insistence and a very long wait, we did get to see a pediatrician, who set the wheels in motion for an autism assessment with a view to a diagnosing him, but with no meaningful support in dealing with what we were going through in the meantime.

We had no idea how best to manage this unexpected turn in our son’s development, but it seemed that none of the medical professionals had either. Perhaps the most valuable decision we made was to side-step the traditional medical route and take it upon ourselves to find an alternative approach.

But it didn’t feel so wise at first. All we had was the Internet, full of promises of miracles and “cures”, at a colossal price, of course – each one with enthusiastic testimonials and promotional videos of transformations with evocative strings playing in the background. Where to start? How to separate the crooks and charlatans from those with something genuine and useful to offer?

Me and my wife both rely a lot on our intuition in such situations, and fortunately we tend to converge. By a remote chance, we came upon the very understated website of the Mifne Centre, a little known clinic in a small village in the north of Israel, which treats families with autistic children up to the age of 2. We knew almost nothing about them, but both somehow felt that this was the one thing that could change our family’s situation. We spoke to them; we found families who had been there previously, and we decided to take the plunge.

Driving from Tel Aviv across Israel to the village, I suddenly became full of doubts. I wondered whether there was even a clinic at all or whether it was a sophisticated marketing scam.

Fortunately, there was, and it wasn’t, and they spent 3 weeks treating our family.

There was nothing apparently remarkable about what they did – they basically played with him in a room one-on-one for 6 hours a day for 3 weeks – but under the surface, there was much more to it than that. They played in a particular way designed to protect him from the destablising sensory overload that is common in everyday life, and also from the more subtle but at least as potent emotional stressors that we were generally less aware of. This provided him with a sense of safety, of being understood, of being confidently looked after, and a space for the therapist to help him open up and allow his inner inclination to participate in the world and interact with others to be evoked. Then, his tolerance of sensory and emotional stimulus could be carefully expanded.

And it worked. Within a few hours of arriving there, he was sitting at the table and feeding himself with a big smile on his face. It was unthinkable. There were tough moments, and all sorts of challenges, as you would expect when you are transforming someone’s entire way of interacting with the world, but from that day, the trajectory was consistently upward.

How exactly the therapy worked is explained in an accessible but also detailed and thorough way in the book, Transforming Autism.

We were extensively trained in these techniques so that we could continue the treatment when we returned home. Essentially, though, it was about giving him full and dedicated attention – with phones and other distractions left out of the room – providing a sense of being listened to, fully understood and completely accepted; and continually inviting him – with no pressure – to join us in simple play,

And with the ongoing therapy – gradually reducing in hours as his strength returned – and with the integration of the principles of the therapy into our everyday life, things have gone on improving ever since. The meltdowns quickly receded; communication and meaningful interaction could again be nurtured, the sensory issues lessened. The clinic advised us that his language would likely return in about 6 months, and within about 4 he was understanding us and starting to use single words again. This video is an example of how engaged he had become just 5 month after we returned to England – aged just over 2 and a half.

After this, the improvements have kept coming, and a couple of years ago, he started at a wonderful mainstream school, where he is very well looked after and which he loves.

But this isn’t just about our son or our family. It’s not about parading what our family has “achieved” as some sort of triumph against adversity. It raises much bigger questions than that. If, as we are told, autism is a lifelong condition, and if it is characterised by difficulties in social communication, sensory issues and so on – how could it be possible that within a period of less than 6-months, this boy went from being utterly resistant to any form of communication, resentful even of the sound of his own name; totally dependent on others for his most basic functions, completely unable to regulate his emotions when faced with the tiniest setbacks – to becoming the delightful, calm and fully engaged individual you have just seen?

It’s not considered possible. The paediatricians were staggered when they assessed him for autism shortly after this and he was only just over the line when they had expected him to register at the extreme end of the spectrum.

So if a few weeks of therapy- could transform him so radically, what does that tell us about how we’ve been understanding autism? There’s obviously something wrong with it.

I don’t believe Daniel was “cured” of autism. I am sure that autism is a lifelong condition. But it is the nature of that condition that we have misunderstood. We see that autistic people have difficulties with social communication, so we assume that this part of what autism is – or that it’s a “symptom” of autism. Same with the tendency to sensory issues and so on.

But what if those things are not a part of autism at all, but just a manifestation of what autistic people have to do to survive in this world – this culture – that we have created around them? What if the autistic condition is not naturally one of incapacity or disability, but one of profound sensitivity in the most positive sense, which, given the right conditions, could lead to a flourishing and impressive life and bring much of great value to us all?

In my experience, I see the autistic child as being generally full of a genuine selflessness, goodwill and idealism. I don’t see them as naturally disengaged from their physical and emotional surroundings, as is often assumed. In fact, they are so deeply connected to them that they cannot prevent themselves being fully absorbed in what is going on around them, hence the need to protect themselves by stepping back from it.

As my son began to come out of himself following our treatment, and there was less need for this sort of protection, we really saw this connectedness with his surroundings coming to the fore. For example, any form of sadness he observed in anybody else was a source of evident pain for him. He would be visibly distressed even by a story book if a character looked sad or angry. There was one lovely book about a cat and a dog who lived together, and one day the cat was out and the dog was hungry and ate the cat’s food. At that point, Daniel exclaimed “no!” and slammed the book shut, and it was weeks before we could persuade him to look at it again – and only then with a lot of preparation (he was worried about how the cat would feel coming home to an empty bowl). On seeing someone in distress, his first instinct became to go and offer them a hug and a kiss and assure them that everything would be all right. More recently – earlier this year – one of his friends was playing with a stick and started to knock some weeds out of the way with it. Daniel is far from the most assertive boy, but feeling distress about the destruction of the weeds, he bravely grabbed the stick from the other boy and ran away with it, to save them.

How should we understand this? Is he just too soft or unable to put things into their proper perspective? Is he just unable to understand the correct way to behave in such situations?

I think that probably the opposite is true. His actions are inspired by his deep connection with the world around him; he is motivated by the impulses of his heart, which don’t allow him to hurt anyone or anything, even if they hurt him. He can express himself and his concern for others free from fear of judgement, because it makes no sense to him whatsoever that acting on his heartfelt care could make him the subject of other’s disapproval or mockery simply because he comes across as a little different. And when that does happen (and it does), it can only be unimaginably confusing, disorienting and painful for him. Still, he maintains that the people who do this are not bad people – they are merely good people who haven’t yet learnt how to be the best they can be.

reality-2Whenever our family has been in those rare social environments where such genuine unintimidated and unconditional openness does exist, we have seen a completely different boy. My wife and I have both practised Heartfulness meditation for over 15 years – since before we met – and actually, it has helped us beyond what we could have imagined to survive and cope pro-actively with the past 5 years. A couple of years ago, we went to a Heartfulness meditation centre in south India, where the huge majority of people were there in such a condition of openness, and realityDaniel was instantly transformed into an open, sociable and naturally integrated child.  Nobody would have looked at him there and thought that there was any sort of issue or problem or certainly not a disability. This was the sort of safe environment in which he could thrive, and in which, probably, we all could if we were prepared to let go of our fears and inhibitions.

So who’s got the problem here? Is it the autistic person who is inherently ready and yearning to be a part of an open, collaborative, inclusive, mutually respectful loving world in which there is nothing to hide and no reason to judge each other, or is it the rest of us, who have created and imposed a culture of fear, concealment and indirect communication to protect ourselves from being judged?

Is it the autistic person whose heightened and refined senses and empathic and perceptual abilities are best preserved by a calm environment in which they can be nurtured and deployed for the benefit of all, or is it the rest of us, who overload ourselves with bright lights and loud noises everywhere to try and induce an artificial state of excitement to compensate for – or divert us from – the lack of meaning we perceive in our lives?

Is it the autistic person who craves to bring only positivity and support to others, or is it the rest of us who bombard them with depictions of tension and cruelty that we habitually titillate ourselves with, and even add our own cruelty to the mix, directed at each other and at them, not realising how intensely painful that is for them.

It’s not surprising that autistic people can often seem so shut down and cut off from what is going on around them. I often think of it in terms of how we would feel if we needed to walk through a war-zone whenever we wanted to go anywhere, even to school or to a shop, and had to walk through people being ruthless and nasty to each other – with death and mutilation all around, and the fear that we could be subject to all that at any moment. And even when we were in a familiar situation with the people we knew best and could trust the most, even they sometimes reverted to behaviour in that direction. How long would it be before we were rocking and shaking and being fussy with food and whatever else – just to try and maintain some sort of control in a world that was unbearable and virtually uninhabitable to us? How long would it be before our neural pathways realigned to conform to an expected configuration for someone in such turmoil?

The National Autistic Society recently released this very short but extremely powerful film – Too Much Information – which attempted to give us a glimpse of what a simple daily activity must be like for an autistic person whose senses were overwhelmed by what we consider to be normal. It asked the question, could you stand more than a minute in a shopping centre?.

So depending on the environment we create around an autistic child, they have the potential on the one hand to thrive and be a source of joy and a true inspiration and even to us to teach us to be as we would actually like to choose to be ourselves; and on the other to be overwhelmed beyond the point of what they can bear and to shut down almost completely, requiring a level of practical care that would not be necessary if we were just a little more mindful of how they experience their surroundings.

I don’t see autism as a set of symptoms, but as the beautiful condition that underlies them and makes them necessary only if the right environment is not available. It is a condition of innocence, idealism, goodwill, care, a readiness to put others’ needs above their own – we could call it love. That’s why I launched the Transforming Autism Project – to inform and empower parents and carers to bring out the essence of this condition in their autistic children by creating in a real and practical way – at least in their immediate surroundings – an environment conducive to their well-being.

If we could create a world around them where we were all primarily motivated by these values, I can imagine many, who currently rock and fail to communicate, being fully integrated in such a world. Some would even be natural and pioneering leaders of absolute integrity, with a clear purpose to safeguard and enhance the well-being of others, as the best in their nature is able to shine through, without being dragged down by undue sensory stimulation or of debilitating emotional negativity.

It might sound like a naïve and clichéd Utopian fantasy, but isn’t it is the hidden and usually ignored craving that each of us carries silently within ourselves?

Let us do all we can to bring as much of this ideal as possible into our lives, at least for our autistic children to benefit from.


Leave a comment

Your email address will not be published. Required fields are marked *

4 thoughts on “The Beautiful Reality of Autism

  • Warren Gilchrist

    I am 70 years old but the description of your son’s experience and behaviour brought memories of my own childhood and the continuing battle to cope with the world. I obtained a diagnosis of Asperger’s Syndrome at age 63. It brought also some misting of the eyes to see the best and most sensitive description I have seen of how we perceive the world and how we are affected by the actions of people which we cannot anticipate or often understand. Your son is privileged to have parents such as yourselves. I was subject to brutality and intolerance of my differences and now have complex PTSD to complicate my life. This sensitivity makes us doubly prone to shocks of this nature. I have not been able to find a therapist who is able to help me to overcome these difficulties more than the inadequate coping mechanisms I have had since childhood, such as avoidance and hypervigilance. I have psychosomatic symptoms such as uncontrollable shaking when playing music as a solo performer. Nonetheless, I have achieved a PhD and a public service career and am a playwright. I would appreciate any suggestions that may be helpful in potentially relieving my constant distress.

    • Andreas Rosenboom

      Hi Warren
      I have just read your mail in response to the published article. I wonder whether you have ever tried out music therapy as a way to support you with your challenges.
      I am not sure where you are based but we offer a service in Richmond upon Thames and I would be happy to talk more and consider whether music therapy might be worth trying out. You can find information about our music therapy service for children and adults on our website: http://www.richmondmusictrust.org.uk/musictherapy

      Best wishes
      Andreas

  • Irene Couzyn-Haas

    Beautiful in so many ways, but heart wrenching too and brought way more than mist to my eyes. Yes, I am a sensitive person, maybe more so than others but nowhere near an autistic person’s sensitivity. How beautiful your child is and how blessed you all are! In my opinion if parents of all children were as sensitive, compassionate, loving and courageous, our world would be a better place!