The Westminster Commission on Autism met for the second time on 2nd February 2016 in order to scope the inquiry on healthcare.
A recent study conducted in Sweden shows that people with autism are more than twice as likely to die prematurely in almost all ’cause-of-death categories’. This means that people with autism who have cancer will die quicker than others with cancer. This is the same for almost everything from epilepsy to heart disease.
Why are people with autism dying prematurely?
Well we need to find out. One tragic reason is that the leading cause of premature death for those with so-called ‘high-functioning’ autism is suicide. But autism is not a mental health condition nor should it inevitable co-occur with mental health issues. Other reasons for this increased risk of premature death may include poor access to healthcare or inappropriate healthcare.
Our autistic commission members talked about avoiding healthcare environments. Healthcare in the UK should be universally accessible. No one should find accessing healthcare so stressful that they avoid it entirely. Reasons for avoidance included difficulty using appointment booking systems, misunderstanding among staff including receptionists, fear of being dismissed/talked down to, harmful sensory experiences in waiting rooms and a lack of faith that the doctor will do anything for them.
There is much that needs to change.
‘Reasonable adjustments’ ought to be standard practice, GPs ought to be well-trained to consult appropriately with someone on the spectrum and people with autism should feel empowered and equipped to access all of the healthcare they need.
The commission members including the Parliamentarians are very concerned; not only are people with autism struggling to access quality healthcare but worse, they are dying prematurely – possibly as a result of poor access.
So what now?
Our inquiry will consider the following:
- The barriers people with autism face when accessing healthcare
- The role of training for health professionals to overcome these barriers
- Ways of empowering and equipping individuals to access the healthcare they need
- The role of data collection, inspection and regulation in improving quality of life and life expectancy for people with autism
- How to better implement existing resources/guidelines/reasonable adjustments
- Whether there is a need for new resources to help overcome the barriers and improve quality of life and life expectancy
Our Commission intends to produce policy and practice recommendations to see genuine action taken to change this. Quality healthcare is not available to all and this is a gross inequality; disadvantaging people with autism.
If you are autistic or are a parent/carer for someone with autism please get in touch with firstname.lastname@example.org