When my son, Oliver, was diagnosed with autism I threw myself into research and my son into therapy. What is autism? How could we cure him? How much is enough therapy? What services are available and how do we access them? What are the rights of children with disabilities? What community education was available and what support was available for carers? I was overwhelmed with options, definitions, studies and statistics.
Much later I realised that, though these processes and systems were essential, they weren’t enough to accommodate the extraordinary and dynamic phenomenon of autism. Social and political processes take time and are up for debate (over and over and over!) while autism requires early and immediate intervention.
Every hour a child is diagnosed in Australia.
There is no official cause or treatment for autism, and the incidence has risen rapidly and cannot be accounted for. Autism has spawned a whole new industry of assessment, therapies and treatments worth millions. The definition of autism embraces a ‘triad of impairment’ in social interaction, communication and imagination that seems to originate in a breakdown in sensory and neurological processing. Repetition, ritual and routine govern behaviour. These ‘skills’ allow people with autism to ‘fit in’ even though their inner struggles and isolation are lifelong.
Autism can be described but the true nature of the connection between Oliver and I does not conform to social and linguistic rules. I believe that living with autism requires a quantum leap of the heart and mind.
When I was younger I loved nonsense poetry with its non-conforming patterns and rhythms that somehow gave birth to truth. I loved the surprises and the absurdity – that all is not as it seems and seems what not it is all. Oliver’s autism definitely makes him different but there is something divine about the way he looks at the world and I suspect he sees and feels more deeply than I ever will. The other day he looked at the sun and said “It’s bright, it’s really bright, its very bright, it’s so bright – which one will it be? I want to cry. I’m born.”Being with Oli is surrealism in motion. At seven years old his toddler-like curiosity has not abated and his sense of conformity has hardly begun…and so it goes.
When Oli was first diagnosed three years ago I wanted to change him and ‘bring him back’ from planet autism. I travelled the dark forest of fear and loss and guilt.
We have done regular speech therapy, kinesiology, homoeopathy, sensory integration, floor time, PECS (Picture Exchange and Communication System) and social stories about appropriate behaviour, nutritional improvements, continuing education (both early intervention and now special school), medications for epilepsy and insomnia. We have tried a gluten-free diet, NAET (Nambudripad’s Allergy Elimination Technique), physiotherapy, cranio-sacral therapy and researched many others. In addition to Oli’s ‘treatment’, his father and I have done many courses and research on how to understand and teach him, and we have changed our lives to make sure we both get lots of respite and support for our own minds, bodies and spirits.
I have been blessed to meet many people over the last three years who have offered me wisdom, warmth and friendship to bring home.
In the last 12 months I have begun to let go. Oli started full time special schooling this year and he has been steadily, if slowly, improving. It was time to let the seeds planted the last three years do their own growing and take their own shape – time for me to let go of the illusions of what Oli could be and embrace who he is. In this expression of faith (born also from hours of counselling and reflection on myself) I have found a deeper meaning, freedom and growth.
I now spend more time being with Oli rather than constantly doing around him. Our connection and love have strengthened though our communication is often in silence rather than words. I laugh with him more and enter his world with pleasure and anticipation rather than an agenda to change him. Our world is still largely surreal but it has its own form and purpose that brings us joy, and for that I am truly grateful.
Oli is now seven years old. He wakes at 6am rather than 4am, he can respond ‘Yes’ and ‘No’ and have a basic conversation, he toilets mostly without prompts and his capacity and willingness to be affectionate have grown immensely. He will now cuddle for up to half an hour – not long ago he would recoil from any touch. He even makes his own social stories to process an event (over and over and over and over and over and over again!). People say he seems happier and more peaceful.
Still, if I break Oli’s routine too much then aggression, seizures and self-harm return immediately. I still depend on visual aides and puppets to try and soothe out difficult situations that arise frequently. There are some things that may never change about Oli but I now know that accommodation and appreciation of his differences are part of the journey.
One day, recently, while Oli was having a bath he said “I want a fish, water oesophagus!” When asked he translated, “I want to drink the bath water!”, and we both broke down laughing hysterically for a good few minutes. I didn’t see any point in correcting him as the twinkle in his eye told me he was playing with me and knew exactly how to say it ‘properly’ the first time.
Monique Nazzari is an artist and social worker whose philosophy is to embrace and learn from all experiences with the aim to become a better person and walk a meaningful spiritual journey here on earth.
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