The report from Autistica is timely and illustrates the power properly and necessarily exerted by charities that focus on crises (Report reveals ‘shocking’ life expectancy of autistic adults, 18 March). However, your article appears to ignore groundbreaking research from Bristol University in 2013 – the Confidential Inquiry into Premature Deaths of the Learning Disabled.
There were earlier reports, too, in 2008, and in 2004 the World Health Organisation (WHO) identified individuals with intellectual disability as a disadvantaged group. A US paper, Unique and Universal Barriers: Hospice Care for Aging Adults with Intellectual Disability (Friedman et al), summarised the WHO report thus: “inequalities in access to healthcare experienced by this group extended to care at end of life”.
I suppose parents like myself of ageing adults with autism needed yet another study from Sweden and the Autistica report to bring to public knowledge what has been obvious for years.
A paper in 2006 in the journal Mental Retardation and Developmental Disabilities used the words “a cascade of disparities” and cited as causes adverse conditions, inadequate attention to healthcare needs and limited access to quality care.
What distinguishes the other reports from that of Autistica is that they show that premature death is a scandal that affects the entire community of learning disabled people. That’s more than 700,000.
As for end-of-life care for the many that include my son, the Guardian reported (2 December 2015) a piece on guidance as death approaches and quoted Department of Health research. How many reports do there have to be compiled at considerable cost before there is action for the learning disabled on what has been the reality since 2004, if not the last century?
Michael Baron
(Chairman, National Autistic Society, 1962-67), London