On Friday 18th March, Autistica launched a report: Personal tragedies, public crisis, highlighting new data on tragic levels of early death in autism. The report shows how people with autism are dying 16 years before their time, with the leading causes of early death being epilepsy and suicide. Life expectancy in autism has been very much overlooked before, and there is virtually no research in this area, but we aim to change that.
Before we launched this report we understood that this news would be shocking for many people, so made sure that whilst putting the report together, we worked very closely with autistic individuals, family members, academics, doctors, professional bodies and fellow charities to ensure that we were communicating these statistics and recommendations for action as sensitively as possible. We held a press conference to ensure that the media got the true facts, and stressed with them the need to present the news responsibly with families and individuals affected in mind.
As a research organisation we hope that this new data, although saddening, brings attention to the issues, and importantly encourages people to take action.
You can read the full report here.
Autism East Midlands have also kindly produced an easy read version of the report.
For those that have concerns, there is an easy read guide for where to go for help.
If you want to take action as a result of hearing about the problem of early deaths in autism, there are five ways you can help now:
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 problems and found clear evidence of systemic failures. 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 health, 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.
If you are affected by the issues highlighted in this report, these organisations offer advice and support:
Samaritans helpline: 116 123 (freephone) or firstname.lastname@example.org www.samaritans.org
Mind helpline: 0300 123 3393 or email@example.com or text 86463 www.mind.org.uk
The National Autistic Society: 0808 800 4104 www.autism.org.uk
SUDEP (Sudden unexpected death in epilepsy)
Action: 01235 772850 www.sudep.org
Epilepsy Action: 0808 800 5050 or firstname.lastname@example.org www.epilepsy.org.uk
Epilepsy Society: 01494 601400 www.epilepsysociety.org.uk
Cruse Bereavement Care: 0844 477 9400 www.cruse.org.uk