Harry is my wonderful 9 yrs old grandson who from an early age has had to cope with being severely autistic. In addition, he won’t eat; has speech language difficulties; some mobility issues, and has also suffered poor health requiring a number of serious operations. Yet despite such problems Harry remains – generally – a good natured, tactile young boy who loves his younger brother Ben and enjoys the many activities my daughter, Carrie, and her husband provide. Harry’s greatest love in life is his mobile phone which he handles incessantly with a dexterity that frankly baffles me, and his laptop with games he can access but can’t actually play, cartoons and repeated vibrant commercials for new cars that he loves. Daily life however is a struggle and I am exceptionally proud of the way my daughter copes with being a mother of two young boys with such differing abilities and interests, a carer to Harry, and a wife – all whilst holding a senior position within a marketing and event management organisation. Living too far away to be involved in their daily well-being, I often reflect on the issues facing children such as Harry, and their families as they struggle to keep abreast of the daily rigours of life.
I recently read a splendid book, The Autistic Brain, by Temple Grandin and Richard Panek and found some of their thoughts moving. Grandin is the ‘face of autism’ in the USA and her online lectures have been viewed millions of times and she was also consulted by Dustin Hoffman when he was preparing for Rain Man in which he plays an autistic savant.
In the US, one in every 68 children currently has an autistic spectrum disorder, whilst here in the UK there are around 100.000 children with autism (one in 100 children) affecting more than half a million people. As the name suggests there is a spectrum of disorders from those with profound disabilities such as those unable to talk, to those with more moderate difficulties such as having problems understanding patterns of behaviour which makes them uncomfortable in company. For many autistic people they have little natural intuition for the unwritten codes of behaviour and human interaction. Grandin has problems with the label autism and in her book is concerned that too many children are being diagnosed with autism when with the correct nurturing environment and discipline from better informed and trained parents as well as more specialists within schools – in the UK 71% of children with autism are educated in mainstream schools and the remainder in specialist provision – they should still be able to live full and useful lives.
Grandin was born into a wealthy Boston family but at six months it was already clear to her parents that their daughter was different and she was diagnosed autistic at the age of three. She would become rigid when held; she would claw at her mother, and as a small child she was paralysed by heightened sensations, for example when the school bell sounded and then there was her lack of understanding society’s myriad rituals. Doctors said it would be best if Grandin was put into an institution as for centuries this had been the fate of the profoundly autistic. In the past those with autism were banded together with the retarded, the psychotic and the criminally insane. Happily Grandin’s mother ignored the doctors and insisted she participate in a functioning life. Her mother employed speech language therapists and after dozens of one-to-one sessions she began to talk. Other mentors emerged and a teacher recognised her gift for science whilst another identified her love of animals. Grandin wanted friendships and could see that conversations between friends followed a rhythm, but she would interrupt at the wrong time thereby stopping the rhythm and the flow of conversation. However perseverance enabled her to learn how to cope with her autism.
The modern history of autism began in the 1940’s when the condition was described independently by Leo Kanner, a German-American psychiatrist, and Hans Asperger an Austrian medical professor – although the two men saw it very differently. For Kanner, autism was a disaster whilst Asperger by contrast felt it could have positive aspects – a ‘particular originality of thought and experience, which may well lead to exceptional achievements in later life’. This helps explain why Asperger’s syndrome is often the label attached to high-functioning autistics. Asperger suggested that autistic people tend to become fixated with detail. This often means they can’t see the wood from the trees but they have a way of looking at a situation that can change its meaning profoundly. Grandin believes that the likes of Einstein (who had no speech until he was 3) and van Gogh were almost certainly on the spectrum, as was in all probability the famous Sherlock Holmes character with his peculiar fixations. About one in ten autistic people are capable of incredible feats – a superhuman memory, incredible IT skills or extraordinary mathematical ability – even though they lack ‘common sense’. The Atlantic magazine has referred autism as ‘the signature disorder of the high-tech information age’, whilst the New York Times has written about ‘the Autism Advantage’. Grandin believes that too many children get too deep into their autism. Instead of learning how to get on in life, too many of them are self-obsessed, believing they are disabled.
In the past, people at the mild end of the spectrum were more likely to find jobs that harnessed their aptitudes, for example, those good with details might be clerks; picture thinkers could be mechanics; and those adept at seeing patterns could be engineers. However on both sides of the Atlantic too many schools are phasing out manual and vocational skills training that autistic individuals can excel at. Schools like Riverston in south-east London are unusual. They deliberately have a large number of autistic students within their mainstream school setting and are expanding their range of manual skills training coupled to independent life skills and the basics like good manners, punctuality, independent travelling (Titan) programmes and independent thinking. Grandin, like many of us, is frustrated that many autistic children spend far too much time playing computer games withdrawing into fantasy worlds, and believes cloistered, cosseted upbringings are leaving too many children ill-equipped to manage their emotions and learning to adapt to human interaction. Riverston’s inclusive, integrated and bespoke curriculum enables a growing number of autistic children – as well as others with special educational needs – to acquire meaningful and life-changing skills in a quasi-mainstream environment that celebrates the success of each and every child. Riverston’s growing reputation for their innovative model is attracting significant interest from educationalists in the UK and internationally. (www.riverstonschool.co.uk)
Rates of diagnosis are running at record levels and with so many in the UK now diagnosed there is a fear that too many doctors are making glib diagnoses. Recent images of the structure of the brain that illustrate the difference between an autistic and a non-autistic person are illuminating and Grandin hopes that genetic explanations may help shift the emphasis from the deficits to the strengths that autism can confer. With the term Aspergers syndrome being phased out (due in large part to an inconsistency in application and definition) in favour of autistic spectrum disorder (ASD) or autistic spectrum condition (ASC), new guidelines in the American Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a key publication for clinicians around the world, propose the main criteria for autism are twofold: impairment in social interaction and social communication along with repetitive behaviour. Grandin is dissatisfied with this nomenclature as she feels it will disadvantage the gifted but frustrated. Grandin sees herself as an alien visitor observing humanity. She says, ’I see how much trouble people have in their lives. I’m really glad I don’t have that. Fighting over stupid things. Not thinking logically. I’m kind of appalled at just how irrational humans can be’. This it seems is her credo: emotions are secondary to tangible results. I think Harry would relate to that!
Prof. Michael Lewis (with thanks to Rhys Blakely, Sunday Times)