One of these founders was Helen Allison, an autism hero, advocate, and mother to Joe, who is autistic, and Miles. To celebrate our 60th birthday, we caught up with Miles, a part-time gastroenterologist. He spoke to us about his brother Joe, and Helen Allison’s incredible legacy...
Your mother, Helen Allison, is an autism icon! Would you be able to tell us more about her, the work she did for autistic people, and what inspired her?
She was born in New Jersey, USA in 1923. She won a scholarship to study Oriental Studies (as it was then called) at the University of Oxford, which is where she met my father, a research doctor. They moved to Mill Hill, North London, in 1958.
It was then that my mother realised Joe was not developing in a typical way, being agitated and avoiding eye contact. Child psychiatrists deemed him “mute and hyperactive” and therefore “ineducable”. My mother suspected Joe may be autistic, and an American friend gave her an article describing a group of parents of autistic children who bought a house in Long Island, New York. They found teachers and many autistic children “came out of their attics” and went to school for the very first time. This is what inspired her to become founding secretary of the Society for Autistic Children, as the National Autistic Society was then called.
In 1962 a parent introduced my mother to Sybil Elgar, a Montessori trained teacher who ran a small nursery. By this time, the situation with Joe was desperate: our house was wrecked and we lived with locked doors, stained walls and ceilings, broken windows and furniture, and interrupted nights and days. Sybil started the first school specifically for autistic children in Ealing in 1968, Sybil Elgar School, which continues to be run by the National Autistic Society today. And a friend of my mother’s, Wendy Landman, was the first principal of the charity’s second school (in Kent), called the Helen Allison School.
Did you know any of your mother’s fellow founders, and what were they like? What inspired their work?
I think they were inspired by my mother! Key parents were Michael Baron (a solicitor), Ilse Burnell and Gerald DeGroot. She also met with Professor Michael Rutter (the first professor of child psychiatry in the UK) and Dr Lorna Wing, one of the first learning disability psychiatrists. Both were based at the Maudsley hospital in South London. Between 1962 and 1968, society administration and meetings took place in the garden room of our house in Mill Hill before they moved to a proper office in Golders Green. The phone used to ring frequently, even occasionally at night, with anxious parents seeking advice.
What impact has their work had on autistic people today?
Attitudes towards autism and autistic people have definitely improved, thanks to the work of people like my mother and her fellow founders. Obviously, neuroscience and psychiatry knowledge have contributed to this, leading to much earlier diagnosis and treatment.
When I was growing up, autism was considered a rarity, and was not viewed as part of a spectrum. Finally, wider society is much more accepting of autistic people, and supported living in the community is being encouraged.
