Why Life with Autism is a Struggle

How Early Intervention can make such a difference

by Guy Shahar

Published: 26th July, 2018

In almost all cases, life with autism is a struggle.  But it is not the autism that is the cause of this struggle.  We have suggested many times that autism itself is a condition of open-hearted goodwill with mutual support at its core and in which competitiveness, unkindness and self-aggrandisement make no sense whatsoever.  It is the sort of condition that most of us would claim to aspire to.

The difficulty comes when beings with this sort of inclination are placed in the middle of a world where the opposite is the norm; where the primary motivation is fear, fostering a climate in which people automatically (often involuntarily) compare themselves to each other, seeing others’ virtues as a threat, and do whatever is necessary to prove themselves worthy even if that involves putting others down.

And when the autistic person is expected to conform to the norms of such a culture, the tension begins.  It is a tension between their own perceptions, values and inclinations on the one hand, and how they are expected to think, feel and behave on the other.

This tension has nothing specifically to do with autism.  We would all undergo a similar tension in an environment in which our own values were routinely violated and we were considered somehow defective for not going along with the expected behaviours.  Imagine being suddenly placed in a world where there was nothing unusual about witnessing and experiencing several acts of what we would consider to be extreme physical violence every time we went out of the house (and even within the family), and we were considered abnormal for not being “strong” enough to absorb it or to participate in it.  How long would we retain our sanity in such a world?  How long would it be before we would simply emotionally disengage from it all due to the unbearable pain not only of what we were having to experience, but of what we were seeing around us and of the wasted potential of such a place?  How easy would it be to access the best in our potential?

The norms of that world would just happen to be in conflict with our own values and inclinations, just as the norms of this world happen to be in conflict with the values and inclinations of people with autism.

So, it is they who are forced to undergo the effects of this tension, just as we would in the other place, at the expense of their ability to realise their own full potential.  From the earliest period of life, as soon as they are exposed to how other people – even their own family who they trust most – behave towards each other, and after not too long to towards them too, must be deeply confusing and upsetting.  The earliest twangs of not being understood set the scene for the rest of their lives.  All people need to be understood, and at such a young age, our very survival appears to depend on it.  The more often this feels like it is missing, the greater the anxiety about it that builds up.  After some time, the slightest hint that their needs are about to be misunderstood and not fulfilled by those whose job it is to fulfil them can provoke extreme panic and an episode that we call a meltdown.

This usually leads to a self-perpetuating cycle, where the parents have no idea how best to support their child during the meltdown and the child’s worst fears about not being understood are thereby reinforced.  Over time, this pattern not only justifies the child’s feeling of being misunderstood, but embeds within their system a sort of post-traumatic stress from which other aspects of what we consider to be the “autistic condition” emerge (though, as Professor Tony Attwood pointed out in our Trauma article and in his interview with us – to be published soon – many of these aspects are actually symptomatic of anxiety rather than of autism).

Could it even be that what we consider to be the very earliest indications of autism, like social withdrawal – indicated by low levels of eye-contact, more interest in things than in people, etc – could actually be the first stages of this process, where the pain of not being misunderstood brings about this withdrawal, which develops over time as the experience is repeated, giving rise to what we think of as the various shades of autism?

By intervening very early in a child’s life and providing the child with a real and soothing sense of being understood so that they can truly trust their parents and others very close to them, we have the possibility of reversing the trauma before it becomes irredeemably entrenched, providing the child with reassurance and inner-strength and allowing the most positive essence of their autistic condition to become realised.

I have learnt a lot about this potential by observing my son.  He was lucky enough to receive an exceptionally effective form of early intervention at the age of 2 in 2011.  This was the Mifne Method, which it is a central purpose of our charity to bring to the UK as soon as we are able.

This method focuses on providing the child with that deep feeling of being fully understood, and very gently inviting them to participate in fulfilling and satisfying interactions, largely through play with a trusted adult.  Critically, it is also about training the parents to better understand their child and respond to them in a way that constantly reassures them that everything is fine, that they are loved in a way that they can recognise as love, and importantly, that their parents understand their needs well enough to be able to fulfil them.

If we had discovered the clinic a few months later, he wouldn’t have been able to be treated there, as in 2012, they reduced the maximum admission age to 2, following a study showing that long-term outcomes were significantly better for children treated there between the ages of 1-2 than those treated between 2-3.

However, even at his age (he was 27 months old when we went there), the results were transformative.  He went from being at what had been described as “the extreme end of the autism spectrum” to starting to develop in a way that had been unthinkable previously.  Critically, as he became able to trust that he and his needs were understood, his anxiety dramatically reduced (he now hasn’t had a meltdown for about 5 years, after previously often having several a day), opening a gateway to his coming out of himself in a very natural way.  In many ways, he has rediscovered his connection with others and his innate interest in the world around him, becoming a happy, deeply loving and caring child, with great curiosity and intelligence, which there had been little sign of before our treatment.  He has extremely strong values, which he will bravely defend even if it costs him, and has become great at finding solutions to all sorts of problems that would otherwise have sent him into distress.

His story and details of how the treatment worked, are included in our book, Transforming Autism.

He still has some difficulties in life, and primary amongst them is his understanding of conventional social interaction and social cues.  As such, the social world is still daunting for him.  I see this as a conflict between his inner nature, which is all about mutual support, positivity, unconditional goodwill, openness and authenticity; and the nature of our current social culture.  His motivation is co-operation and not fear.  In a world where people behaved as we would all claim to aspire to behave, I don’t believe there would be any social issues at all and he would be at the heart of social life.  This is one sense in which the inner nature of autistic people is something that could serve as an example to improve our world.  But as it is, the uncertainty of how others will react to him, the unwarranted unkindness he could face and that he sees others face (which I think is more bewildering and disorienting than painful), and the inauthentic and indirect communication that constitute social cues cause this aspect of life to be overwhelming.

Having said that, many children who are treated at an earlier age at Mifne do develop more of a natural understanding of social interaction and participate fully and indistinguishably in it.  They have gained the ability and strength not to find it daunting or overwhelming and nearly 90% of them go on to become integrated in mainstream schools.

To be clear, this treatment – or any other – is not a “cure” for autism.  Such a thing does not exist.  This is not because it hasn’t been discovered yet, but because autism is not a disease to be “cured”.  These children treated at Mifne are not changed in their essence in any way.  They remain who they are, with their true nature and idealism intact.  The difference is that the anxiety caused by being misunderstood and continually frustrated is removed so that they can develop more in line with who they really are and what they can bring to this world.

And the fact that this happens successfully time and again clearly shows that life with autism doesn’t need to be so difficult.  It can be deeply rewarding with a huge unique contribution to make to society.

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