GUY SHAHAR turns an apparent tragedy into an opportunity for love, light and transformation.
The advent of our son’s autism forced and guided my wife and me to learn to become better parents than we could ever have hoped to be otherwise.
Between the ages of one and two, Daniel went from being a playful and energetic baby, to being almost totally cut off from his surroundings, including his family. He would spend his days lying on the floor rolling a toy car backwards and forwards and resenting any attempt at communications, especially if it included his name. He stopped looking us in the eye, lost all of the words he had acquired, lost even basic self-care capabilities including the ability to swallow solid food, and became susceptible to prolonged and intense meltdowns for very small reasons, during which he was totally inconsolable. This left him utterly exhausted.
It was heart breaking for us. The memory of our happy baby was so recent, and now we were seeing him suffering like we couldn’t have imagined. It felt as if the condition was robbing him of his life, both now and for the future.
We started frantically researching what we could do to help him. The Internet was full of therapies offering miracle ‘cures’ in exchange for colossal sums of money. They promised so much, but their marketing felt so commercial and when we explored the therapies in depth, neither of us really resonated with them. Luckily, we both relied on our inner feeling of what was right, and the vast majority of the time we came to the same conclusions.
When Daniel was born, we had bought only one book about parenting, which we hadn’t read. Now, in desperation, we looked in the index to find ‘autism’. There was a single reference, which led us to a short paragraph about a small clinic in the north of Israel that had great success treating autism in babies and toddlers. In contrast to all the others, its web presence was small and understated. It didn’t make any promises or even say much about its method, but we both had a positive feeling about it. We sought out other families who had been there and listened to their experiences. We applied to go there and we were accepted. We went shortly after Daniel’s second birthday, and it transformed our family’s life.
What did they do there? It was so simple, and yet nobody back home had suggested anything like it. They simply played with him – one on one, in a quiet room – for six to seven hours a day for three weeks. That’s all. Of course, they used their immense understanding of his condition to be able to build a solid relationship with him. They brought out his hidden interest in the world, showing him that it could be safe to interact with those around him, and more fulfilling than retreating into himself. They taught us how to do the same. Faced with this warmth, trust, understanding and attention, we saw more and more of his inherent character re-emerge, and by the end of our time there we were gratefully getting used to seeing his beautiful smile again.
This continued as we pressed on with the same therapy at home in the years following our return. He became ever more confident, resilient, imaginative, warm and affectionate. Now, aged six, he is such a loving and joyful boy, thriving in a mainstream school. He is still learning to navigate the social world, but is doing far better than we could ever have hoped in the difficult times.
Far from being unaware of emotions going on around him,
he is profoundly affected by them…
This could easily be dismissed as poor self-regulation,
but for us it shows he cares very deeply
about other living things and feels profoundly connected to them.
Living through all of this, we learnt something too about the nature of autism. It is often thought of as a disability, in which a person is withdrawn and finds it difficult to communicate with his or her surroundings, has unusual sensitivities to sensory stimuli but seems unaware of emotional phenomena. But we rarely ask why. What it is that creates these symptoms, which are assumed to be a lifelong condition?
Seeing Daniel’s life renewed has given us a new understanding about this. Far from being unaware of emotions going on around him, he is profoundly affected by them. It is difficult for him to even look at a picture in a storybook where someone is sad or frightened. If he sees another child crying at school, he carries this painful memory with him and it weighs him down. If he sees someone knocking weeds out of the way, it is a matter of great distress for him, as he feels for the plants. This could easily be dismissed as poor self-regulation, but for us it shows he cares very deeply about other living things and feels profoundly connected to them.
We believe it is the pain of unrelenting exposure to the unnecessary cruelty that humans inflict on each other and on other living species that makes it impossible for autistic people to remain open and engaged in this world. That is why they need to protect themselves by retreating inwards and reliant on ‘autistic’ behaviors.
The only difference for Daniel is that, with support, he has built an admirable ability to cope with some of this pain, which is still evoked in him.
We don’t see autism as a set of symptoms, but as the condition that underlies them and makes them necessary. It is a condition of innocence, idealism, goodwill, care, a readiness to put other’s needs above their own – we could call it love. This is what exists beneath the apparently impenetrable exterior of the autistic person.
There is so much they can contribute to our world, to make it the sort of peaceful and mutually supportive place that we all wish for, but they can only do so if we nurture them and create an environment around them that enables them to feel safe, understood and loved.
I want to share as much as we have learnt about how to create such an environment to transform an autistic child’s life. Earlier this year, I unexpectedly found myself writing a book about our journey and this book has now been published. I have since launched the Transforming Autism Project, which aims to further spread awareness of the true nature of the autistic condition and empower other parents to make transformational changes in their own family.