Judy Singer started ASpar, the online support group for the children of Autistic parents in 1999. It was a world first: the first space to recognise that Asperger’s children do grow up, and some become parents. This may now seem obvious, but in 1999, the focus was all on children, and the next step hadn’t occurred to anyone. Let alone that some of the characteristics of AS might be problematic for their children.
As a child, Judy had sought the world over, in literature, in film, and even in psychiatry textbooks, for words to explain her mother’s odd behaviour. Finding nothing, she gave up, and assumed her mother, Agnes, had simply made a choice to be self-centred, invasive, lazy and helpless! But when Judy had a child of her own who began to show similar behaviours to her mother, the penny dropped. It was something hereditary!
Since discovering AS, she now has the words she sought: unable to recognise social cues, obsessive, compulsive, perseverative, anxious, short-fused,
Judy’s next thought was: “If this is a common disability, then I can’t be alone! But how to find others like me?”. As a sociology student, she had the academic tools to research the subject thoroughly. But she found absolutely nothing anywhere in the world. Then along came the internet, and Judy realised this was the opportunity to reach out that she had been waiting for. And within a few days of her setting up the ASpar website, the very first prospective member showed up! From then on it seemed like a whole new world of relief and amazement opened up for every new person who joined, the common theme being “At last, I am not alone!”
For Judy and Agnes, this was a healing journey, thanks to the support of ASpar members who understood at last, and the rivers of tears that so many of us let go forever.
There is a happy ending – Judy now understands what Agnes had to contend with as a disabled woman who the world simply did not understand. She respects her mother’s struggles and recognises that at heart Agnes had always been a loving, wholly innocent, trusting human being who could not comprehend her effect on the people around her, or their rejections.
But just as important as understanding is practical support, pharmaceutical advances and publicly funded social services. Having been evicted from her home because of her hoarding, Agnes now lives in a wonderful retirement village. With SSRIs managing her anxiety and depression, and getting the level of personal care and domestic help that she has always needed, she has gone from being someone constantly shunned and rejected, to the most beloved resident! Thus some of the traits of AS – a lack of herd behaviour, ie cultural bias, prejudice, or malice, a lack of interest in gossip, a love of music and ideas, and a childlike openness have come into their own at last. And the fact that retirement homes are places where eccentricity is the norm.
Judy still believes the necessary level of personal care is something no child should ever have to provide for a parent.
She remains sceptical about the value of interventions by
“professional” social welfare agencies in the family home