World Autism Awareness Day is marked on Tuesday April 2. It was established in 2007 by United Nations Resolution 62/139.
According to Autism Speaks:
This UN resolution declares WAAD as one of only four official health-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.
Raising awareness is fine and the National Autistic Society has a full programme on the day including a live webchat with Chief Executive, Mark Lever and a special Autism supplement in the Independent newspaper. The NAS also points out that raising awareness matters because
a lot of myths still surround the condition. These misconceptions can have a damaging effect on the lives of people living with autism, making it more difficult to have their condition recognised and to access the support they need.
One of those myths, perpetuated by narratives like the one above from Autism Speaks and the wording of the UN Resolution is that autism is primarily a problem of childhood. Early diagnosis and early intervention are indeed often associated with positive outcomes. But what about adults? If you missed out on the early stuff does that mean it is too late for you? Autism Speaks has another narrative for that.
World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.
The key words here are growing global health crisis and autism epidemic. The recorded prevalence for autism has grown dramatically in the last twenty years. The generally accepted figure today is 1 in 100 or 100 in 10000. I take this as a vindication of the pioneering work of Wing and Gould(1979) in establishing a prevalence of approximately 20 in 10000 for autism and related conditions in a special school population in Camberwell, Middlesex in the early 1970s together with the work of Ehlers and Gillberg (1993), who established a prevalence of approximately 70 in 10000 for Aspergers and related conditions in mainstream education in Gothenburg. These studies are referenced in a discussion document on prevalence on the NAS website. Probably the best explanation of the growth in numbers is the redefinition of autism as a broad spectrum condition affecting individuals of all levels of cognitive functioning instead of a narrowly defined disorder. Pressure from parents and, latterly, self advocacy by autistic adults has also helped to push autism up the agenda and modern epidemiological studies using the latest diagnostic criteria have revised the figures upwards from the 5 in 10000 of the early studies in the 1960s.
Autism Speaks, along with a number of parent advocacy groups, primarily in the United States but with representatives in many countries around the world, argues that the growth in numbers cannot be explained by increased awareness, improved methods of ascertainment and the broadening of diagnostic criteria. Instead we are presented with the narrative of an epidemic. And as twenty years is too brief a time-span for a genetic epidemic there must be an environmental cause. Or causes. At one time vaccines were in the dock. In the UK MMR was identified in studies that were at best inept and at worst fraudulent. In the USA thimerosal was indicted. The evidence for these claims has been refuted yet again but campaigners insist that there must be something or some things, in vaccines, in the atmosphere, in food or household chemicals or maybe an unspecified combination of them all contributing to the so-called epidemic.
This is bad for three reasons. Firstly, quack doctors continue to prey on parents and persuade them to subject their children to costly and potentially harmful treatments that have no basis in science. Secondly, the rhetoric of the epidemic has created a fear of a coming deluge of severely disabled autistic adults who will swamp health and care services. These fears have been fuelled by coverage of a recent survey purporting to show that one in fifty children in the USA are autistic. Emily Willingham makes the important point in her discussion of this story that much of the increase is in teenage children, predominantly boys, in mainstream schools. They are emerging as autistic now, not because of environmental toxins, but because factors now at work in their social environment make their autism more obvious. If you are a reasonably intelligent autistic child you can learn to get by unnoticed by imitating your peers and learning the rules. Then all the rules change in adolescence. No one tells you they have changed and you are busted. Plus you are changing as well. Teenage years are difficult for everyone. Imagine trying to navigate your way through adolescence with the added impairment in social understanding that features in autism.
But most autistic teens do get through it and can become contributing members of adult society if society is prepared to make the necessary adjustments and accommodations to meet their needs. This is happening in the world of physical disability with technical advances in the design of wheelchairs and other prosthetic devices alongside a social revolution in attitudes and a willingness to spend money on lifts, ramps and other means to make our public spaces and workplaces accessible to all.
But there is a third and potentially more damaging consequence of rhetoric like that employed by Autism Speaks. If autism is presented as a new and growing threat, the many autistic adults who already exist and are struggling with needs that are unrecognized and unmet will, in the words of a previous NAS campaign, continue to be ignored or ineligible. While research funds concentrate on finding causes and cures in order to head off a tragedy fabricated out of fear and uncertainty, the certain tragedy of adult lives mired not because they are different but because we are indifferent will continue.
In my private life as the parent of an adult autistic son, in my professional life as a teacher in special education and in my public life with the National Autistic Society I am well aware that autism does bring enormous problems. But these are compounded by misinformation, misunderstanding and the missing resources that could make all our lives so much easier. If Autism Speaks really wants World Autism Awareness Day to be an occasion to celebrate the unique talents and skills of persons with autism and [be] a day when individuals with autism are warmly welcomed and embraced in community they should spend less time scaremongering about autism and pay more attention to what autistic people and their allies are saying. Autism Listens perhaps?