I had a piece in the Daily Mail last Tuesday about a couple, Sandra Beale-Ellis and her husband Joe Ellis from Herne Bay in Kent who found out as adults that they both have Asperger’s Syndrome. For both or them the diagnosis came as a huge relief as Joe in particular couldn’t understand why he behaved how he did – his obsessions with collecting salt shakers, hatred of the colour red, bright lights and clothes near his skin. For Sandra, the relief was also linked to the fact that she finally had an explanation for Joe’s sudden rages, something Asperger’s experts call ‘meltdowns.’
Many people report similar relief at getting a diagnosis often after repeated visits to doctors who know little about the condition. But others say it’s medicalising the human condition and claim that some conditions on the Autism Spectrum Disorder such as Asperger’s are over-diagnosed to the detriment of the people receiving the diagnosis.
Under the Autism Act passed in November 2009, the Department of Health in December 2010 produced statutory guidelines for local authorities and Primary Care Trusts to help improve the diagnosis and care of adults with autism. These include training for GPs in diagnosing autism and Asperger’s in adults, personalised services based on local needs and help in the transition to adulthood for young people.
But for skeptics, such as consultant paediatric psychiatrist Professor Sami Timimi of Lincoln University, the entire diagnosis of Autistic Spectrum Disorder (of which Asperger’s is only one sydrome) should be abolished.
For his book The Myth Of Autism: Medicalizing Men and Boy¹s Social and Emotional Competence (Palgrave Macmillian £18.99) Dr Timimi analyzed the scientific literature on autism. ‘From the start, autism has been nothing more than an idea,’ he asserts. ‘There is no evidence to show it has any medical or biological basis.
He says diagnoses of Autism Spectrum Disorders including Asperger’s Syndrome are not only unnecessary labels, they imply an abnormality that¹s not useful for an individual’s future.
‘Autism has been subject to the ‘elastic band effect’ in diagnosis’, he explains. ‘That’s where, once you define a particular feature, for example social communication in the case of autism and Asperger’s, it becomes easy to stretch the diagnosis and use it to explain all sorts of diverse individual problems such as unhappiness, obessiveness or clumsiness’.
But the behaviour may be linked to a patient’s diet, to their past or it may mask deeper issues of trust or abuse, he says. ‘By diagnosing autism, you not only miss out the possibility of exploring these and making the child or adult better through treatment, you can label people for life.
‘When you label people with a lifelong disorder for which there is no cure it can be a real obstacle to development.’
Dr Timimi looked at tests such as the AQ (Autism Quotient) and others used by psychologists to diagnose autism and Apserger¹s. ‘In my opinion, these so-called autism screening instruments are money-making exercises on the part of psychologists using them. There is an autism industry making money out of people¹s misery’, he says.
The huge rise in diagnoses of autism in the last 50 years (from four in 10,000 to one in 100) reflects a decreasing degree of tolerance in our culture, he says.
‘Men’s traditional roles have disappeared and now, those that don¹t show this strange thing called ‘emotional intelligence’ will be more likely to end up with a diagnosis of Asperger’s or autism,’ he says.
By labeling more people with disorders such as adult ADHD, Asperger¹s and high-functioning autism, we narrow our tolerance of what is considered normal, he asserts.
‘If people fail to fit into this ever-narrowing framework of normal the risk is that we medicalise more and more traits of human behaviour, more people are diagnosed and the autistic spectrum contunues to widen, while the framework of what is normal continues to get smaller. As a result, we miss the contribution such people could make because of the unusual way they see the world.
‘What if Albert Einstein was labeled with Asperger’s Syndrome at 15 or even 30 years old? Would he have picked up his disability card and given up?’
But for Sandra, having a diagnosis has been life-changing. ‘I no longer feel to blame for Joe’s rages and feel much more in control what is going on,’ she says. ‘I often hear people saying they don’t want to be labelled. But they’re going to end up getting other nastier labels anyway such as ‘lazy’, ‘unsociable’ or ‘badly behaved’ which could have a far more negative impact on their lives. I was labelled, a ‘wreck’, a ‘weirdo’ for years but having a diagnosis of Asperger’s has helped me understand and care for myself better. At least I know its accurate.’
I have a close friend with a son who has autism diagnosed when he was just under three, seven years ago. Since then he has received special care at a school focused on giving children like him the specialist teaching and education he needs to learn in a way that suits him. That’s not only better for the child – who has made great progress – it’s also been great for my friend as the schools special needs educators have helped her understand her child better.
It’s a personal thing I know, but if I was in Sandra’s position or in that of my friend – in both instances I would like to know.
Right now The American Psychiatric Association is revising the DSM – The Diagnostic and Statstical Manual of Mental Disorders, its first major revision in 17 years. One of the proposed changes is abolishing the diagnosis of Asperger’s Syndrome altogether in favour of the umbrella term Autistic Spectrum Disorder. The upshot is that I believe most psychologists in the UK use a different diagnostic manual. But if you disagree you can make your voice heard by signing one of the many petitions against the move online such as this one.