What we’re doing right (and wrong) on autism
As World Autism Awareness Week goes into full swing Dr Emma Gowen, a University of Manchester expert in the condition explains what more needs to be done to make autistic people’s lives better.
“As a researcher, I’m struck by how much more we talk about autism nowadays - but also by how many misconceptions still predominate. World Autism Awareness Week is a fantastic opportunity to talk about these issues and that’s been helped no end by the excellent drama on BBC 1, the A Word. Our project at Manchester, also aims to make an important contribution.
“The A Word does seem to reflect the difficulties that parents face after diagnosis, as support is so patchy and often poor: they are often left in limbo – with little or no support over decisions such as whether to be home schooled or not, and are often spoken to in professional terms that mean little to ordinary working people.
“Our project runs in partnership with Salfordautism, a local peer-support and advocacy organisation. During three workshops, we met many people who live with autism to discuss how academics and autistic people might work together to learn more about autism, resulting in a series of honest and revealing short films The films highlight misconceptions autistic people face – as well pointing us researchers to those areas which are important to autistic people themselves.
“Many people think that autistic people have extraordinary talents, but in fact, only at most 1 or 2 in 200 individuals can be described like that. Everyone has their own strengths and weaknesses, and that includes all autistic people.
"And while many people think the condition just affects children, it is simply not true: less than 25% of all autistic people are children and all autistic children grow up to be autistic adults. While over 75% of autistic adults are capable of and wish to work, only 15% are in full-time paid employment. And at least one in three autistic adults experience severe mental health difficulties due to a lack of support.
“And yes, women can be and are autistic, too. Officially, five times as many men than women are diagnosed with autism but research shows that autism spectrum disorders are vastly under-diagnosed in women, so the balance between the sexes may be much closer than that.
Women have autism too. Officially, 5 times as many men than women are diagnosed with autism but autism spectrum disorders are under-diagnosed in women, so the balance between the sexes may be closer than that.
“Societies awareness of autism has increased, so that’s a good thing. Sadly, this can lead to the misleading impression that it’s on the increase when there’s no indication that it is any more or less common now than at any time in the past. What we are seeing is actually a result of changes in how diagnosis was carried out up to the 1980s – when autism was defined very rigidly and perhaps inappropriately. The definition has now been much improved by greater awareness of newer discoveries.
“There is also a growing understanding of the inappropriateness of the 'medical model' of autism, which tends to look for a cure, and uptake of the 'social model' which seeks to understand and accept everyone's individuality: many healthcare professionals and most autistic people now seek to create a supportive environment in which autistic people can flourish. And that, most of all, is what I hope this week will get across.”
NOTES FOR EDITORS
Dr Gowen and Peter Baimbridge from Salfordautism, are available for comment
According to Peter Baimbridge, autistic people do not like the use of the term 'suffering’ when describing autism and so it should be avoided. He prefers the use of 'autistic people', ‘people with an autistic spectrum condition’, or 'people with a diagnosis of autism / an autism spectrum condition.
To see the video and complete a questionnaire, visit https://sbli.ls.manchester.ac.uk/local/autism/