On Friday 18th March, Autistica launched a report shedding light on the tragic levels of early death in autism. Before we launched this report we understood that this news would be shocking for most. I remember experiencing the shock and devastation when I read and reviewed the existing research on a Saturday morning in November. I thought of every autistic person I knew, every family member. When you do that, it is hard to deal with such a tragic inequality in outcomes.
Since November, every autistic person, family member, academic, doctor, professional body and fellow charity we have engaged in the writing of our report Personal Tragedies, Public Crisis have also expressed the same shock I experienced. But our aim is not to shock, our aim is to extend the lives of autistic people. Here are five things you can do to help achieve that aim.
1. Sign the petition
Tell David Cameron it's #timeforanswers and that we must undertake a National Autism Mortality Review. The data that we highlight in our report is from a large Swedish study so in order to get funders, government and services to really take action in the UK, we need to understand the problem here. If we can assess clinical and mental health services and understand best practice, recommendations can then be formed for reducing early death in autism. You can sign the petition here
2. Email or write to your MP
There are practical steps which we know should be taken now to extend the lives of autistic people now. Tell your MP to lobby for more research funding, clearer identification of autistic people, better health checks, and an autism-friendly NHS. Ensure you MP ensures action is taken following the unacceptable findings from the Mazars report which investigated the deaths of people with a learning disability or mental health problem and found clear evidence of systemic failures. (https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf). You can get in touch with your MP here.
3. Submit evidence to the Westminster Commission
The Westminster Commission on Autism are conducting an inquiry in to the access to quality of healthcare for autistic people. Let them know how improvements can be made by making a submission here
4. Get involved in research
To further understand why autistic people are dying early, we need research studies to track outcomes of families and autistic people. We currently fund two research databases at Newcastle University to enable people to take part in research, and to further the progress of families and autistic adults. If you have a child with autism you can sign up to this database here. If you're an autistic adult you can sign up to this database here.
5. Help us raise money to increase research funding into the major drivers of early death
We aim to raise £10 million towards tackling this mortality crisis in autism. We want to understand the views of the autism community, the link between autism and epilepsy, the factors which lead to suicide, poorer physical, and crucially how we can lower the risk of death and improve quality of life for autistic people. We need your help to raise that money. Find out more here.