Is it time to rename Asperger’s syndrome?
The Asperger’s label was a means of overcoming the stigma that attached to austism diagnosis
The world of autism was recently thrown into turmoil by the revelation that Hans Asperger, the Viennese paediatrician whose name has come to be associated with “higher functioning” individuals on the autistic spectrum, was involved in the child euthanasia programme during the Nazi occupation.
A rigorous study based on contemporary documents by Herwig Czech revealed that Asperger was directly involved in the assessments of children with disabilities, many of whom were transferred to the Spiegelgrund clinic, where nearly 800 were killed. In her new book, Asperger’s
Children, American historian Edith Sheffer shows how Asperger’s career benefited from the antisemitic purge of the medical profession, and how his concept of autism emerged from the prevailing eugenic consensus (shared as much by Western medicine as the Nazis).
A former patient once asked me to refer him for a diagnostic assessment after he had completed an online questionnaire that suggested he had Asperger’s syndrome. He later told me that the psychiatrist had advised him that he met some of the criteria, but that it was up to him whether or not he should be given the “Asperger’s” label.
This sort of discussion over diagnosis – which never happens in relation to other conditions, such as schizophrenia – reflects the way in which the expansion of the autism spectrum has led some to embrace Asperger’s syndrome as an identity rather than a disorder.
The dramatic rise in the recognition of the syndrome, among adults as well as children, owes much to the work of the late Lorna Wing, who first introduced Asperger’s work to the Englishspeaking world in the Eighties. For Wing, a founding member of the National Autistic Society and the mother of an autistic daughter, as well as a clinical and academic authority, the Asperger’s label was, above all, a means of overcoming the stigma that attached to the diagnosis of autism. As she wrote, Asperger’s syndrome appeared to be “much more acceptable to parents”. Documentary filmmaker Saskia Baron, whose brother is autistic, has suggested that perhaps “Wing syndrome” would be a more appropriate label.
Disappearing doctors
The Ninth National GP Worklife Survey confirms the familiar picture of professional demoralisation. Perhaps the most alarming findings are that 39per cent of doctors are considering quitting within the next five years – rising to 62per cent among those over the age of 50.
Talking over these figures with a former colleague last week, he thought that what was really wearing GPS down was the apparently inexorable rise in patients’ demands and expectations. The most striking manifestation of this, in his view, was the trend for doctors to seek diverse ways of “hiding” from patients.
The proliferation of jobs in education away from what used to be called the “chalk-face” of the classroom has been recognised for many years. A parallel trend has developed more recently in general practice. More doctors work part-time, and more of their time is taken up with education and training, continuing professional development, appraisal and revalidation. Others are preoccupied with practice administration, local consortia and commissioning – and fewer are seeing patients.
The results are declining continuity of care, increasing patient dissatisfaction and doctors heading for the surgery door. At this rate, Jeremy Hunt, the Health Secretary, may need more than his target of 5,000 new GPS by 2020.
Fake news fines
Paul Offit, a professor of vaccinology and paediatrics in Philadelphia and defender of childhood immunisation against anti-vax campaigners, has come up with a novel way of dealing with journalists whose ill-informed reporting damages public health. He proposes “journalism jail”, where reporters found guilty of the crime of “bad science” reporting are fined up to $100. It could catch on, couldn’t it?
James Le Fanu is away
Email medical questions confidentially to Dr James Le Fanu at drjames@telegraph.co.uk