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AUTISm AUTISm
DEfININg A SpEcTrUm that the children would grow into with the more neutral, Kanner-derived dead, their children are still disabled,
label: autistic.
and now middle-aged. One hopes that
autistic adults and that the condition
was a life sentence. By June that year the future, with its increasing incidence
Following the birth of his son Timothy in 1956, the founding group had gathered Prescient optimism of the disorder of ‘autism’ will be kind
What is today the UK’s largest
together more parents, mostly from
to them, but today who can be sure?
michael geoffrey baron became a founder member in London and the Home Counties, autism charity was reborn. And with
1962 of what would become the National Autistic Society. and the charity was formed. remarkable and prescient optimism The concerns we had, and which
Here he reflects on the early struggles, the huge changes The title of the new charity was Helen Allison and I drafted a paper devastated so many families,
about diagnosis and prognosis, early
dubbed ‘The Project’. We called for a
that have come about since, and the challenges that face a provocative. Were our children – in the special school for autistic children alone, intervention, public awareness,
new generation of parents in tough times. accepted meaning of ‘psychotic’ – the training of teachers, and an advice focused and informed education,
mad ? This title was at variance with and information service for parents. placement, training of teachers, work
our firm belief in special education. Our numbers were not large. Two years opportunities – I name but a few – are
Lorna Wing by then had discovered after the charity’s foundation, the Mid- still with us today against a backdrop
e were a young couple as we are by the publicity machines Everard, with her experience in and studied the work of Leo Kanner in dlesex survey carried out by Victor Lotter, of austerity in the shrinking state. And if
Wand Timothy was our of autism organisations like the NAS, marketing. All good people who Baltimore (USA) who coined the term with its diagnostic markers based on I put the A-word in quotation marks in
first born child. His initial Autistica, Ambitious About Autism, had the shared aim of starting ‘autism’. The Nine Points (of diagnostic the Creak Nine Points, only yielded an the preceding paragraph, it is because
development after a forceps Autism Independent UK, Child Autism an organisation to help their markers) adumbrated by Mildred Creak incidence of four cases of autism per more than half a century on, as a
delivery appeared normal. UK and others that back in the autistic children. at Great Ormond Street Hospital was 10,000 children. Today in the UK we parent and observer, I am unsure that
However my wife, who was summer of 1961, there was only the guide which granted admission settle for one in 100; and in the USA, the label of ‘autism’ is right: the
more familiar with babies, the small Mencap organisation In the early 1960s Lorna Wing was at to the ranks of affected children, with its incredible eagerness for spectrum of disorders is more like
was concerned at the way he and the quirky but expert Camphill the start of a brilliant career that would an entrance examination which might diagnosis, one recent statistic claims the a constellation of brain disorders
seemed to withdraw from (Rudolf Steiner) Movement. lead to her describing autism as a save a child from long-stay hospital or incidence at one in 45 among males. that are assumed to encompass men
her touch. He walked spectrum. She would delineate a triad training centre. and women who are just different or
suddenly at twelve months Medical bias of impairments as the key criteria for Concerns still with us exceptional, and their peers who are
and toilet-trained early but The Mencap conference hosted the diagnosis, which still holds today. Looking back I think we had a We did not know, in March 1962, severely intellectually disabled.
infant babble did not become luminaries of the day, now almost Lorna was to become the UK’s snobbish desire to differentiate ‘our’ that inputting ‘autism’ on Google And many too have co-morbidities
infantile speech, and ceased forgotten. There was a heavily medical intellectual guru of autism. Helen and kids from those for whom Mencap would lead to millions of hits in 2016. which we did not see back in 1962.
altogether when his sister bias, with Doctors O’Gorman, Peggie were already in touch with catered. The Society for Psychotic Or that in the UK there would be some Is one word the last word? But that is
was born a few months later. Creak, Soddy, Stroh, O’Connor. other London parents. Children (which began as an affiliate 16 autism charities and hundreds of for another generation of parents
Among the speakers there was one of the latter and was also associated autism websites; or numerous schools and ‘autistic’ people to argue over
Then Timothy developed encephalitis teacher, Margaret Chojko, and one No place at Mencap’s top table with the Invalid Children’s Aid claiming their credentials in ASD as science brings us closer to the
and although he recovered after a parent, Judy Fryd herself. Later the It seemed that Mencap had not got a Association), abandoned the affiliation education. A handful of driven parents knowledge of causation.
few months, I now suspect the seeds same year a TV programme chaired by place for us at their top table; all to Mencap. Under the inspired just did what was necessary for their
of the behaviours, now described as Dr Gerard Vaughan, who later became middle class, university graduates, guidance of Lorna Wing we also children at the time. But today, save for Photo of Timothy Baron by courtesy
autistic, began at the very beginning. a Tory MP, introduced to the UK four professionals, with children who dropped ‘psychotic’ and replaced it a handful of oldies, those parents are of the estate of the late Mrs Baron
Perhaps it was the brusque forceps parents and their puzzling, disturbed behaved unusually but did not have
delivery (an injury to his brain), children all labelled ‘psychotic’. the classic look of learning disabled EVENTS 12-15 September 12 october
perhaps it was the inflammation of children. We agreed to meet again. royal Holloway birmingham
encephalitis, perhaps there were Timothy aged 6. Our kids were holding on, just, at 12 September – birmingham University, london ‘right Time, right place,
genes present in his very DNA that Children of tolerant nursery schools; our instincts changing our lives – The 4th European conference right care’ continence in
predisposed him to autism; we will the founder were to reject the medical model and ‘got my back’, a National on fetal Alcohol Spectrum children and teenagers
never know and always wonder. members of the the apartheid-like division into the conference on postural care Disorders (fASD) This conference by ERIC will
NAS behaved ineducable and the educable; one track This conference will focus on This conference brings together showcase new research, highlight the
And so it was that in the summer of unusually but to the training centre or the sub-normal- postural care. If tackled consistently academics, educators, non-governmental impact of continence problems on the
1961, faced with our son who did did not have ity hospital, the other track leading to around the country it would have organisations and charities, legislators everyday lives of children and
not speak and who rarely slept, the classic look some ideal school. We believed that it a big impact on people’s quality of and politicians, lawyers and individuals teenagers and discuss innovative
we sought the opinion of a respected of learning was not a matter of children who could life. Speakers include: Chris Hatton – involved in the criminal justice system, approaches to managing them.
paediatrician. First, he said his disabled children not be taught; it was instead a matter of Professor of Psychology, Centre birth and adoptive families alongside Go to:
disordered speech, agitated behaviour teachers who had not yet acquired the for Disability Research, at Lancaster individuals who themselves have FASD; http://www.eric.org.uk/conference
and limited comprehension was My wife and I watched the programme. skills to enter the world those children University, Jenny Whinet – shared learning will help promote the
juvenile schizophrenia but after a Their kids were just like Timothy. I rang lived in and so bring them out into the Family Carer and Anna Marriott – understanding of this disorder in the 25 November
visit to the USA, he pronounced it was Mencap, got the conference transcript, sunlit uplands of normality. Improving Health and Lives Learning UK, Europe and internationally. london
childhood psychosis. In those days joined as a member, and volunteered Disabilities Observatory (iHal) Go to: http://www.eufasd.org/ Autism and social skills
that was the accepted label among my services. At the time I was a We felt and hoped passionately that project manager. EUFASD_2016/home.php This conference run by the
the psychiatric fraternity. solicitor of five years standing. At a our children were in a phase of infantile To book your place at the National Autistic Society will
meeting in Mencap’s Holborn office disorder that would pass, if only… conference tel: 0300 302 0770 13-15 September look at how unwritten social rules
Where to turn? there were a few parents; I met Lorna So when a slightly larger group of Email: ask@changingourlives.org chingford, london can be anxiety-inducing for autistic
It was the early days of the Wing, then a young psychiatrist at the parents met in March 1962 at a house Be Free festival organised by Paradigm people. It will also discuss the
at Gilwell Park Scout Activity Centre
effectiveness of social skills
organisation we now know as Mencap. Maudsley Hospital, Helen Allison, a in North London, and quickly decided Subscribers can advertise their Go to: http://www.paradigm-uk.org/ development programmes
Judy Fryd, one of its founding parents, vigorous American, Oxford-educated to form a new charitable organisation, events frEE in this section. events-training/free-festival/ and apps.
organised a conference in September and with a background in the CIA ; our preferred title was the Society for contact the Editor: Email: loreb@paradigm-uk-org Go to: http://www.autism.org.uk/
1961; its subject was ‘The Psychotic they were both married to doctors. Psychotic Children. We did not for a elinor.harbridge@btinternet.com Tel. 020 870 8643 socialskills2016d
Child’. We forget today, surrounded And I met the indomitable Peggie moment believe, or want to believe,

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