I learned today that Dr Lorna Wing died on Friday. Her contribution to our understanding of autism is unsurpassed. I think it was Dr Ekkehart Staufenberg, speaking at a National Autistic Society conference on Extreme Behaviours within ASD in June 2004 who remarked that if we examined every original and productive idea in the field of autism we would find that Lorna Wing mentioned it first. Or perhaps I heard it the following year at the inaugural NAS International Conference, which was introduced by Lorna Wing. Her opening address is available online. It ended with this prescient nod in the direction of the new diagnostic criteria for autism in DSM-V. I hope that ICD-11 will not be far behind.
The present sections in ICD-10 and DSM-IV on pervasive developmental disorders with their illogical mix of criteria should be thrown out of the window. They should be replaced by a sensible system based on a dimensional rather than a categorical view of autism and other developmental disorders. Each person’s profile of skills and disabilities is far more informative than saying they have Asperger’s syndrome, PDD NOS or any other subgroup in DSM-IV or ICD-10.
I never met Lorna Wing. But like many parents I felt I knew her via her book, originally published in 1971, The Autistic Spectrum. Her academic rigour and accessible style combine to make this one of the few books that can justify its subtitle as “A Guide for Parents and Professionals.” This is probably down to the fact that Dr Wing was herself, both a parent and a professional. Her daughter, Susie (1956 – 2005) was diagnosed with autism when she was three at a time when the cruel notion that bad parenting caused autism was the height of orthodoxy. Adam Feinstein, in an excellent chapter in his History of Autism, “The 1960’s; the parents fight back” describes the role of Lorna and her husband, John, both trained psychiatrists, in helping to establish autism as a neurological condition and not a psychiatric disorder. From the very start rigorous research was allied to parent advocacy for their children. Feinstein quotes from Lorna Wing’s personal memoir of the time.
Up to the end of the 1950s, the general public was profoundly ignorant concerning autism and the same was true of most professionals, even psychiatrists and psychologists. Among the few who were interested and aware, many agreed with the theory that the children were potentially normal but had been made to withdraw by cold, distant and overintellectual parents. Diagnosis was difficult or impossible to obtain and there was no help or support for the parents. Children could be excluded from education in school if they had severe learning difficulties or disruptive behaviour and there were virtually no special schools for children with autism.
According to Lorna Wing two things combined to overturn this state of affairs.
One was the development of objective, scientific investigation into autistic disorders, which showed that children had real disabilities underlying their unusual pattern of behaviour. The approach of the pioneers in research was very different from the armchair theorizing that had gone before. The other was the creation of the National Autistic Society [in the UK].
Lorna Wing played a central role in autism research and in setting up the NAS. At that time it was all about parents and children. And following from Kanner’s pioneering work, the children were seen to have a very rare and disabling condition. But Lorna Wing, in partnership with Dr Judith Gould pioneered the concept of an autistic spectrum in which varying degrees of impairment rather an absolute absence of social recipricocity was key to understanding autism. Their finding were published in the landmark Camberwell Study in 1979, which suggested a fourfold increase in prevalence for autistic spectrum disorders of 20 in 10000 when compared to the 5 in 10000 figure for the narrow definition of Kanner’s autism.
Even under this broad definition most children with autism were still severely impaired and most were found within the special education system. But if, as Wing and Gould have consistently argued, autism is fundamentally a disorder of social cognition what about children of normal or above average intelligence with a similar impairment? Do they have a place on the autistic spectrum. Clinicians in continental Europe who were familiar with the work of Hans Asperger would answer yes. But Asperger’s work was largely unknown in the English speaking world until Lorna Wing published Asperger syndrome: a clinical account in 1981. She also contributed a chapter to Uta Frith’s book, Autism and Asperger Syndrome (1991) which contained the first published English translation of Asperger’s original paper.
So, over the course of thirty years, Lorna Wing was instrumental in countering the “refrigerator mother” theory of autism. She brought it into the mainstream as a developmental disorder which encompassed the full range of intellectual ability and brought the work of Hans Asperger to the attention of the Anglophone scientific community.
Lorna Wing has also been connected to the other great change in our thinking about autism, that for some people its positive aspects may outweigh the disability. A profile published in 2011 in the Guardian quotes her thus.
Another change has been a focus on the positive elements of autism; a kind of autism pride. “I do believe you need autistic traits for real success in science and the arts, and I am fascinated by the behaviours and personalities of musicians and scientists,” says Wing. She also believes that most of us have some autistic traits. “One of my favourite sayings is that nature never draws a line without smudging it. You cannot separate into those ‘with’ and ‘without’ traits as they are so scattered.”
Lorna Wing was never “either/or.” For her autism remained a complex and fascinating area of study in which the needs of the more able and the less able were acknowledged. This has particular poignancy in relation to her daughter Susie, who was one of those more disabled. The same Guardian profile ends with an account of Susie’s death.
“We were devastated. We were so close to her,” says Wing. “She couldn’t express her emotions but when you came home, her face would light up. That was absolutely wonderful.”
Lorna Wing leaves us a massive legacy embodied in her writings and in the Lorna Wing Centre for Autism. This is a diagnostic centre which pioneered the taking of developmental histories from parents alongside the clinical assessment of children and adults with autism. My son was diagnosed there. Most important for me, considering the horrors that have been inflicted on autistic people and their families in the name of science, is that Lorna Wing showed us how to combine academic rigour and fidelity to the scientific method with a deep humanity. She will be missed.