One of the nicest things about my current post is that I’m working in a transdisciplinary department, and that means having the opportunity to look at issues that are interconnected. One that urgently needs addressing is autism and health disparities, as outlined in the 2016 Westminister Autism Commission report: https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autism-report-july-2016.pdf
Drawing on research from Sweden and elsewhere, the Commission outlined ways in which poor access to everyday and specialist healthcare shaves decades off the life expectancy of people with autism. While those in institutional care are most severely affected–which will be quite shocking to those parents and referring practitioners who wrongly assume that being in institutional care means receiving more attention to health needs, not less (those of us familiar with institutional practices know better…)–but the findings hold true for adults living in family care or independently as well. And they are not related to autism itself, but to abuse, neglect, lack of appropriate care provision, poor communication efforts by care providers when working with autistic people, and mental ill health. And rather than seeing the latter as some intrinsic part of autism–it isn’t–it is imperative that healthcare providers, care providers and wider society take an honest look at their role in producing mental ill health, through devaluing people with autism (and especially those who also have intellectual disabilities and/or severe communication barriers), providing unequal opportunities in education, work, and the community, dismissing health concerns presented by people with autism or their parents/carers, and failing to take necessary steps to improve communication.
This is an issue I’m familiar with from the experience of family members, including one who has needed to use an advocacy service to gain access to quite basic healthcare via the NHS, and from the results of research in the UK and the US. Unfortunately, so far the responses to the issue have not been robust enough, and researchers need to look at factors not only within healthcare systems or institutional care, but in social attitudes towards autistic people.
Dr Mitzi Waltz 