Cause, care, cure and celebration. What do these words have in common? Answer: they were identified and named as conflicting disability agendas by autism policy theorist, Dana Lee Baker, from Washington State University, in her 2011 book, The politics of neurodiversity.
They are her words but they make sense to me as someone trying to understand why autism policy (and disability policy generally) can be so complex, why we seem to have trouble agreeing and getting it right. It depends on your relationship to autism (or disability).
Research money is often directed to cause and cure. People doing this work have high status and are often conference keynote speakers. Meanwhile care usually has a negative focus which is reflected in reports about how much disability costs. So there is resistance to paying family carers, or staff for sleepovers when caring for disabled adults in residential care; benefit payments have rigid eligibility criteria, and punishments for noncompliance are severe. Meanwhile, the autism/disability celebration movement is growing.
Cause research is big business. But it privileges clinicians and professionals. It can also soak up limited autism research funding, meaning less is available for research to improve access to education, employment, independent living, welfare support, and public health care.
Care most often means work for mothers (or other family members). But it is not valued work. The extra stress when there is a disabled child in the family means the parental relationship often breaks down leaving (usually) the mother with no support, no income and a community often hostile to their autistic child. Meanwhile disabled adults and their family carers had to fight in the courts for a decade for the family carers to be paid on the same basis as strangers coming into the home.
As the Minister of Health said last year when announcing the minimum wage for a maximum of 40 hours a week for only some parents (not parents of children, nor spouses) and denying any further access to legal challenges, ‘Our society expects parents to care for and support their dependent children’ (with a sub text – for no pay and whatever their age).
Eligibility for and uptake of this policy has been, unsurprisingly, minimal. Large scale institutionalisation used to be the answer, albeit one that often denied the humanity of disabled people. But government policy has not yet worked out equitable support mechanisms that dignify autistic or other disabled people and their families.
A cure for autism excites many clinicians and pharmaceutical companies. However, many autism self-advocates fear the eugenic consequences. If pre-natal screening, for example, becomes effective autistic people might cease to exist. We also need to remember the mistaken ‘cures’ of the past such as lobotomies, heavy drug regimes or un-anaesthetised ECT. Cure language is all about deficit and suffering, and media stories emphasise the ‘tragedy’ of autism. It is not healthy for our autistic children to hear such talk.
In contrast, the most significant development in the last 20 years has been the growth of the autism identity movement. The view of autism as something deficient is now challenged by members of the autism self advocacy community. In what is sometimes called the ‘autism cultural wars’, autistic adults now challenge as abuse the therapies and interventions for which some parents of autistic children pay a great deal. Some family members are also joining them. This can also be seen as part of the bigger disability rights and celebration of identity movement.
Cause, care, cure and celebration may be four divisions but people need not be in just one camp, and their perspectives change over time. As a parent of an autistic child, I started with a care focus and now celebrate autism. I know adults who celebrate their autistic identity but are also very interested in genetic research and take medication hoping for a cure for their most annoying symptoms.
Four kingdoms of autism: illness, identity, injury and insight
One of the most influential people in autism is Dr Thomas Insel, a psychiatrist and behavioural neuroscientist and the director of the United States National Institute of Mental Health which oversees government funded autism research. Last year he wrote a blog post trying to make sense of the contradictions. He called them: illness, identity, injury and insight. Illness refers to biomedical approaches.
He has learnt about identity because in his role he has had to work with members of the Autistic Self Advocacy movement who have challenged the system in order to be heard in that space. Their leader, Ari Ne’eman, is also on Obama’s National Council on Disability. However, Ari’s nomination was held up by senators aligned to the cure autism lobby who objected to someone being positive about living with autism.
For Insel, injury reflects the concern of some that autism is caused by vaccines or something else inflicted on a healthy child. What he calls insight reflects his own background and the value he places on the work that cognitive neuroscientists are doing to understand the social brain. He has developed his thinking in further blog posts.
Viewing autism or disability like this via what can be called a ‘critical diagnostic’ approach may seem divisive, but it can be inclusive with room for all, and it allows for attitudes changing over time. Whatever their priority, all groups aim for better understanding. Where do you fit?