When you’ve met one person with autism, you’ve met one person with autism
Dustin Hoffman as Raymond, the mispronounced title character from the film Rain Man (pictured, right), defined autism for an entire movie-going generation. I watched the film in the cinema long before autism entered our lives and found it an affecting revelation of a condition I knew absolutely nothing about. Much more inspirational to many people who understood autism through personal experience was the story of Kim Peek on whom the film was based, diagnosed as an “idiot savant” and deemed unfit for society and prescribed a future in an institution.
However Kim had something in his favour, his father Fran. Because of Fran’s determination, Kim’s incredible ability did not disappear behind the walls of an institution and so he was spared being doomed to a life defined by what he couldn’t do. Fran Peek had other ideas. He ignored advice because he had seen his son’s ability, not disability, and these gifts were still baffling experts in the workings of the human brain at the time of Kim’s death in 2009, aged 58, from a heart attack.
Kim shares something in common with our younger daughter Emily, in fact something in common with many people on the autistic spectrum. He was entirely dependent on his father for all his needs. Although he had phenomenal skills of memory and recall, his inability to execute routine motor skills meant that he couldn’t perform the most basic tasks of personal care. So Fran remained Kim’s primary carer for life.
Together they travelled all over America, and later the world, as Kim spoke to lecture halls filled with people clamouring to hear from the man with the incredible memory for facts, leading to the renaming of his savant ability as “mega savant”. It was at one of Kim’s inspirational talks that father and son met Barry Morrow who turned Kim’s life into a screenplay and Oscar winning film. They inadvertently provided a reference point to the condition of autism and, although approximately 60,000,000 people have autism worldwide, current thinking on savant ability – as detailed by The National Autistic Society – suggests that this accounts for less than1 per cent of people on the spectrum. However, what can’t be understated is that the film and Peek’s global fame brought greater understanding to Autistic Spectrum Disorders.
For me, autism remains a condition as mysterious and baffling as it is at times challenging and heartbreaking. It’s a condition originating in the brain and primarily one of communication, social interaction, eye contact, and an all encompassing need for routine. What we know is that autism affects one in one hundred children in the UK, what we don’t know is why. Sometimes autism has accompanying learning disabilities like with our younger daughter Emily who was non verbal until she was seven, sometimes not, as with our older daughter Lizzy who has Asperger’s syndrome and of above average intelligence and gifted actress and artist. Which, of course, debunks the myth that creativity is impossible for those on the autistic spectrum.
Irrespective of the degree of severity of the condition, loving someone with autism is a beautiful, terrifying, rollercoaster. They have made our life beautiful because of their lack of pretention, spite, malice and superficiality with tendencies that transcend the mundane and banal and offer a unique perspective on life; and terrifying for the sheer vulnerability that these same attributes engender in our girls and many autistic people.
We watched as our girls were diagnosed and as they have grown they have endured and been perilously challenged by a world not made for neurodiversity. They say that society disables people and this is true but what is equally true is the disabling nature of ignorance, which pervades the condition and those who have it.
If I wished to I could “blame” the fillings in my teeth, my cold and unmotherly manner, too much television, not enough love, the MMR vaccine, plastics in toys, and food colouring as the cause for my girls autism. Then we get into the wackier end of craps Ville- Munchhausen’s by proxy, ‘demons’, attachment problems and good old-fashioned “naughtiness”. The truth is no one knows the cause, there is no cure and if truly autistic, the condition is lifelong. Far better to promote acceptance of difference with informed support and early intervention than search for a cure in my view.
The truth is simple. Autism is a physical brain dysfunction. As organic and as ordinary as that. The only proved effective intervention is an early intervention of education based on understanding, patience and a refusal to give up. The model demonstrated by the charity Ambitious About Autism with its amazing, state-of-the-art TreeHouse School gives voice to this wish everyday. I spoke to Mark Atkinson, director of policy at Ambitious About Autism. He said:
“From Rain Man to dazzling savants, we’re more than aware of the stereotypes of autism. The reality is, once you’ve met one person with autism, you’ve met one person with autism. Assuming that everyone with autism will behave the same is unhelpful and fails to recognise that autism is a spectrum condition, so while some people will share characteristics they will be highly individual in their needs and preferences – just like ever other human being.
“We know that autism is a lifelong learning developmental disability affecting the way a person communicates and how they experience the world around them. A person with autism doesn’t have the condition because they received a particular inoculation as a child or their mother didn’t love them enough. It’s a disability and we believe early intervention, education and individualised support are critical in enabling children and young people with autism to lead fulfilling lives. We want to make the ordinary possible and to achieve this society needs to accept that autism is a part of every day life.”
As a parent carer and advocate I know that Joe Public can be as vocal as they are ignorant at times. A journey into town is fraught with strangers sharing their stares and their thoughts with us as a matter of routine. The mantra of “what that child needs is a good slap” but the ignorant remains untested in this house. Slapping a child with autism to shake them out of their condition remains as pointless as slapping a blind child to sight.
But that doesn’t prevent desperate parents endorsing and promoting the latest therapy. In a world built on convention and sameness it may be a challenge to love someone who may not make you “proud” in the conventional sense. Parenting can at times, for some, be a deeply unsettling competitive game of attractiveness and ability and conventional attainment and if you simply want children who reflect your hopes and aspirations of perfection and mirror your own neurotypical achievements, may I suggest waiting until cloning becomes an option. We give birth to individuals not “mini me’s”. Disability and neurodiversity is more than difference dashing parental hopes and dreams. It is a binding contract of love that all parents should make to their child. However a child’s DNA is structured, it did not combine from cell-division onwards as a deliberate insult to a parental notion of transmutable perfection.
As the mother of girls with autism there is another myth which needs clarifying: the notion of autism as a gender-specific condition. Aside from Kim Peek probably the most famous autistic person is Dr Temple Grandin,a woman who again transcended notions of autism equalling ‘never’. As a Doctor of animal science, best-selling author and named in the Time 100 most influential people list of 2010, Grandin has disproved the myth that high-functioning autism remains an exclusive preserve of the male brain as she too tours the world, teaching and navigating for the rest of us the truth behind the myth of autism.
After 18 years of learning about autism 24 hours a day, 7 days a week, the greatest myth of the conditions lies in the declarations which stem from narrowness of our assumptions about it. I’m constantly surprised by what my girls are capable of in spite of the experts. To force autistic people to conform to an agenda for life created by nonsensical, neurotypical rules, which render non-autistic people ‘safe’ and autistic people terrified, seems such a waste of everyone’s time. Instead it is what we can learn from people with autism through broadening our own minds and by defining people as equal of value, not ability, which is my truth. In doing so we unlock their potential to be, to achieve and to give us the gift of viewing the world through the prism of uniqueness.
Rain Man was where I began my understanding of autism. It was a film which brought together many facets of a complex and evolving condition. It introduced me to a spectrum which was as unfamiliar to me as the interior walls of the institution which Kim Peek was prevented from entering by his father’s determination and frustration with a neurologist who, legend has it, decided Kim’s fate in five minutes on his way to a game of golf. All these years later the universal truth remains, whether expert, professional, parent or bystander. As Mark Atkinson said,“when you’ve met one person with autism, you’ve met one person with autism”.
As far as I’m concerned when it comes to my children or anyone on the autistic spectrum, the time to make up our minds about their ability is never.Tagged in: autism, disability, Dustin Hoffman, equality, learning difficulties, prejudice, rain man, tolerance
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