Defining a spectrum

Following the birth of his son Timothy in 1956,Michael Geoffrey Baron became a founder member in 1962 of what would become the National Autistic Society. Here he reflects on the early struggles, the huge changes that have come about since, and the challenges that face a new generation of parents in tough times.

We were a young couple and Timothy was our first born child. His initial development after a forceps delivery appeared normal. However my wife, who was more familiar with babies, was concerned at the way he seemed to withdraw from her touch. He walked suddenly at twelve months and toilet-trained early but infant babble did not become infantile speech, and ceased altogether when his sister was born a few months later.

Then Timothy developed encephalitis and although he recovered after a few months, I now suspect the seeds of the behaviours, now described as autistic, began at the very beginning. Perhaps it was the brusque forceps delivery (an injury to his brain), perhaps it was the inflammation of encephalitis, perhaps there were genes present in his very DNA that predisposed him to autism; we will never know and always wonder.

And so it was that in the summer of 1961, faced with our son who did not speak and who rarely slept, we sought the opinion of a respected paediatrician. First, he said his disordered speech, agitated behaviour and limited comprehension was juvenile schizophrenia but after a visit to the USA, he pronounced it was childhood psychosis. In those days that was the accepted label among the psychiatric fraternity.

Where to turn?

It was the early days of the organisation we now know as Mencap. Judy Fryd, one of its founding parents, organised a conference in September 1961; its subject was ‘The Psychotic Child’.  We forget today, surrounded as we are by the publicity machines of autism organisations like the NAS,  Autistica, Ambitious About Autism, Autism Independent UK, Child Autism UK and others that back in the summer of 1961, there was only the small Mencap organisation and the quirky but expert Camphill (Rudolf Steiner) Movement.

Medical bias

The Mencap conference hosted the luminaries of the day, now almost forgotten. There was a heavily medical bias, with Doctors O’Gorman, Creak, Soddy, Stroh, O’Connor. Among the speakers there was one teacher, Margaret Chojko, and one parent, Judy Fryd herself. Later the same year a TV programme chaired by Dr Gerard Vaughan, who later became a Tory MP, introduced to the UK four parents and their puzzling, disturbed children  all labeled ‘psychotic’.

My wife and I watched the programme. Their kids were just like Timothy. I rang Mencap, got the conference transcript, joined as a member, and volunteered my services. At the time I was a solicitor of five years standing. At a meeting in Mencap’s Holborn office there were a few parents; I met Lorna Wing, then a young psychiatrist  at the Maudsley Hospital, Helen Allison, a vigorous American, Oxford-educated and with a background in the CIA ; they were both married to doctors. And I met the indomitable Peggie Everard, with her experience in marketing. All good people who had the shared aim of starting an organisation to help their autistic children.

In the early 1960s Lorna Wing was at the start of a brilliant career that would lead to her describing autism as a spectrum. She would delineate a triad of impairments as the key criteria for diagnosis, which still holds today. Lorna was to become the UK’s intellectual guru of autism. Helen and Peggie were already in touch with other London parents.

No place at Mencap’s top table

It seemed that Mencap had not got a place for us at their top table; all middle class, university graduates, professionals, with children who behaved unusually but did not have the classic look of learning disabled children. We agreed to meet again. Our kids were holding on, just, at tolerant nursery schools; our instincts were to reject the medical model and the apartheid-like division into the ineducable and the educable; one track to the training centre or the sub-normality hospital, the other track leading to some ideal school. We believed that it was not a matter of children who could not be taught; it was instead a matter of teachers who had not yet acquired the skills to enter the world those children lived in and so bring them out into the sunlit uplands of normality.

We felt and hoped passionately that our children were in a phase of infantile disorder that would pass, if only…  So when a slightly larger group of parents met in March 1962 at a house in North London, and quickly decided to form a new charitable organisation, our preferred title was the Society for Psychotic Children. We did not for a moment believe, or want to believe, that the children would grow into autistic adults and that the condition was a life sentence. By June that year the founding group had gathered together more parents, mostly from London and the Home Counties, and the charity was formed.

The title of the new charity was provocative. Were our children – in the accepted meaning of ‘psychotic’  – mad ? This title was at variance with our firm belief in special education.  Lorna Wing by then had discovered and studied the work of Leo Kanner in Baltimore (USA) who coined the term ‘autism’. The Nine Points (of diagnostic markers) adumbrated by Mildred Creak at Great Ormond Street Hospital was the guide which granted admission to the ranks of affected children, an entrance examination which might save a child from long-stay hospital or training centre.

Looking back I think we had a snobbish desire to differentiate ‘our’ kids from those for whom Mencap catered.  The Society for Psychotic Children (which began as an affiliate of the latter and was also associated with the Invalid Children’s Aid Association), abandoned the affiliation to Mencap. Under the inspired guidance of Lorna Wing we also dropped ‘psychotic’ and replaced it with the more neutral, Kanner-derived label: autistic.

Prescient optimism

What is today the UK’s largest autism charity was reborn. And with remarkable and prescient optimism Helen Allison and I drafted a paper dubbed ‘The Project’. We called for a special school for autistic children alone, the training of teachers, and an advice and information service for parents. Our numbers were not large. Two years after the charity’s foundation, the Middlesex survey carried out by Victor Lotter, with its diagnostic markers based on the Creak Nine Points, only yielded an incidence of four cases of autism per 10,000 children. Today in the UK we settle for one in 100; and in the USA, with its incredible eagerness for diagnosis, one recent statistic claims the incidence at one in 45 among males.

Concerns still with us

We did not know, in March 1962, that inputting ‘autism’ on Google  would lead to millions of hits in 2016. Or that in the UK there would be some 16 autism charities and hundreds of autism websites; or numerous schools claiming their credentials in ASD education. A handful of driven parents just did what was necessary  for their children at the time. But today, save for a handful of oldies, those parents are dead, their children are still disabled, and now middle-aged. One hopes that the future, with its increasing incidence of the disorder of ‘autism’ will be kind to them, but today who can be sure?

The concerns we had ,and which devastated so many families, about diagnosis and prognosis, early intervention, public awareness, focused and informed education, placement, training of teachers, work opportunities – I name but a few – are still with us today against a backdrop of austerity in the shrinking state. And if I put the A-word in quotation marks in the preceding paragraph, it is because more than half a century on, as a parent and observer, I am unsure that the label of ‘autism’ is right: the spectrum of disorders is more like a constellation of brain disorders that are assumed to encompass men and women who are just different or exceptional, and their peers who are severely intellectually disabled . And many too have co-morbidities which we did not see back in 1962. Is one word the last word?  But that is for another generation of parents and ‘autistic’ people to argue over as science brings us closer to the knowledge of causation.