Autism is for A

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. 1

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’ 2 in social interaction, communication and imagination that seems to originate in a break down 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, its so bright – which one will it be? I want to cry, I’m born.” Being with Oli is surrealism in motion. At 7 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 3 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, homeopathy, sensory integration, floor time, PECS (Picture Exchange and Communication System) and social stories about appropriate behaviours, 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 3 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 3 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 7 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.

1 http://autismhour.com.au
2 http://www.autismspectrum.org.au/a2i1i1l237l113/what-is-autism.htm

What is an ism?

What is an ism?

what is an ism?
a prison or a prism?
the company of isms
requires some considerism,

Buddhism or Taoism
discipline kind
strings of faith and ritual
traditions of heart & mind,

Surrealism, Dadaism
or Cubism shapes
creative exploration of
authentic escapes,

heroism, pacifism or
optimism delay
being in the world
accommodate the way,

there are ism prisons
of a darker bent
distinguished easily
by harmful intent,

autism’s not a syndrome
nor a disease
a new vibration
an eternal lease,

consider a way
of being in space
of living stillness
and not a race,

this ism teaches us
something of love
something of being
below as above.

A clear mission

The story started long ago
Inspiring forerunners
to cultivate and grow.

Now it’s time for us
to open our hearts
allow true nature
to play it’s part.

If you are willing
Then you will see
The seed of truth
Grow into a tree.

Give of yourself
Through effort and love
Me becomes we
Below as above.

Obstacles will come
And then they will go
Through them we learn
Within them we grow.

Each moment in every day
Illuminates truth
and reveals the way.

Us is them
Then is now
Separation is illusion
All is how.

Forgive with heart open
Transform habits in time
Please, sorry and thank you
Lead to divine.

Infinity Revealed

Infinity Revealed

Within the world of Silence
That Oli brings to me
Rests a pool of stillness
A chance to stop and be.

Separate from ego
I sense a greater whole
Beyond my expectations
and my physical role.

Oli brings connection
a chance to search and find
A bridge leading to spirit
From my busy mind

A choice to nurture heart
A chance to be healed
Deep in definitions
Infinity revealed.

I wanna swap

I knew my son was somewhat outgrowing his diagnoses of autism when he put one of his star reward charts up on the fridge and said “Mum clean your room and you can have a star! – I wanna swap!”

Swapping is an intricate part of social interaction, communication and entertainment. Kids swap toys and cards, girls swap clothes, we have swap meets, reality shows to swap families, in movies and stories people swap identities to learn lessons, we swap recipes, swap ideas in think tanks and meetings and we swap beliefs for the sake of a good debate. Even though society prizes possessions and consumerism the culture of swapping allows us to speak heart to heart and say “I want connection”. The act of giving joy to another is a letting go of ego and attachment. It’s a part of who we are and what we are all capable of it.

Part of an autism diagnoses is often the inability to process more than a couple of instructions at once- there is often a single minded focus at any one time. Yet Oli will swap words in sentences and, surprisingly, this way can memorise a long list of tasks. He say’s to me “I watch my milk and drink the video, I play the toast and butter the computer and (his favourite part!) I eat my teeth and brush the eggie!” We laugh uncontrollably.

New areas of science are finding that people with autism process information differently and hence learn in a different way. (1) Oliver, like a lot of young kids, often writes numbers and letters backwards. I drilled him for weeks to do it ‘properly’ with slow progress. One day I decided to ‘swap’ and copy his numbers – just to experience what it is like to do something which goes against your natural flow. It is very difficult and I made a lot of ‘mistakes’! When I finally wrote the numbers 1-10 backwards Oli said “Mummy got it right!” Appreciating his view somehow allowed him to learn and now he can write his letters and numbers ‘properly’.

Other defining characteristics of an autism diagnoses are rigidity, repetitive behaviour, developmental delay and a resistance to change. Yet, Oliver seems to move in states of being that I can hardly comprehend. A door creaks in the wind steadily -open and close, open and close, open and close and Oli can concentrate for a long time, glancing at me and smiling with intense alertness enjoying the simple rhythm. What could be an everyday noise becomes a doorway to connection and mindfulness. Social interaction only requires two people.

When Oli was first diagnosed 4 years ago I was trapped in the cycle of diagnoses, grief and fear for the future. This cycle is natural and ongoing but it is only part of the story. Oliver has taught me that the shortest distance between any two people is acceptance. One of my favourite swapping games is when Oli say’s “I want to love mummy so…big!” and laughs hysterically. Then he will substitute all his favourite things to express the extent of his love – “I want to love mummy so…train set!” and “I want to love mummy so…computer!” and so on…

The essence of swapping is a conscious act of non-attachment. It prompts me to question whether this is a pathway to our true nature? Perhaps the ‘alarming’ increase in autism is a compass to guide us on our spiritual path?
We practice swapping so much in our culture acknowledging the transience of the physical world and possessions. What if we could take a leap of faith and swap our beliefs, judgements and habits as easily as a recipe or a dress? What limit would there be to the connecting of our hearts?

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(1) “The Brain that Changes itself” – Norman Doidge

The Triad of Awareness

When my son, Oliver, was diagnosed with autism 4 years ago we were given little information and no hope for the future. The labels we were given were DELAYED AND DISORDERED. I played these words over and over in my mind. I thought this was truth. I thought something was really wrong with my son.

At that time, our local autism organisation gave us a business size card that we could hold up in awkward social situations that said in big letters “PLEASE UNDERSTAND MY CHILD’S BEHAVIOUR, HE HAS AUTISM”. On the other side of this card it explained that autism was a ‘lifelong developmental disability due to some form of brain disorder’ and that it prevented people from ‘properly understanding what they see, hear and otherwise sense’ as well it prevented people from behaving ‘appropriately’. I felt hopeless.

Not long after this my son began to walk backwards…

Not long after this my son lightly scraped his knee and for a week ‘walked’ low to the ground scuttling like a crab – everywhere we went…

Over the last year I have read a lot about brain evolution science. This demonstrates that our brains are physically capable of constant change and that positive thinking can have measurable impact on our bodies and minds. It made me wonder if I could become more positive and hopeful about autism? Could I unplug my mind from the diagnoses and labels? What would it be like to live without comparison to a mythical ‘normal’ child? Is it possible to transcend definitions of self and other that divide?

For months I observed Oliver closely. He has a unique capacity to be joyful with himself and a close circle of family and friends. His connections, though few perhaps compared to the multi-communication world we live in, are full of love and presence. He does get upset if someone is angry and loud, if a day is crammed with activity or if we try to take him to a shopping mall. So far so good – I can accommodate less activity and less noise. Oliver’s words are playful or functional – they are sometimes meaningless to me but seem to make sense to him. There is no gossip or meanness, no complaining over and over about the same things he can’t change, no worrying about the past or the future, no demanding the latest toys. I have come to believe that Oli sees dimensions of life I can’t even imagine and I am beginning to wonder if that has to bring fear.

Life inevitably brings suffering – an accident, death, diagnoses of something or other, divorce and so the list goes on… I now believe that within every challenge is contained the seed of opportunity to grow ourselves. Autism, because of its complexity and omnipotence is a greater opportunity – I believe it is an evolutionary signpost pointing towards an age of great acceptance and connection.

Being with Oli has given me an opportunity to let go of certain habits – I have become more aware of what is truly necessary or important and what is not. Some of the losses have been painful, but only temporarily so. I like to have my shower and breakfast in the same order every day. I hold beliefs that I cling onto and fight for. My social interactions need a little work at times. I get anxious. I can see that, in many ways, what society calls autism is just part of the human spectrum condition. By trusting and letting go of my attachments Oli seems to also learn that change is ok.

I now try to choose words and actions with reflection and care. I try to listen more and talk less. I look beyond what I am told is possible to imagine greater things for Oliver and myself. The gains are still unfolding. Autism has taught me that underlying every social interaction and every word that I choose is the potential for non-awareness and illusion. If I follow my heart they are always grounded in truth.

Sometimes Oli does retreat to what seems like another world, either filled with joy or pain, that I cannot see – but I am learning that by being peaceful and present in myself Oli feels safer wherever he is and that, in this calm place, we can more easily find strategies to grow together.

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