The Autism Alliance responds to LeDeR annual report

The latest annual Learning from Lives and Deaths report – known as LeDeR – focusing on people with a learning disability and autistic people, has been published by King’s College London.

The LeDeR programme is vitally important. Autistic people and people with a learning disability have a substantially lower life expectancy than the general population, and it is critical to learn from reported deaths so that improvements can be made across the healthcare system, and more people can live happier, healthier, longer lives.

The report is distressing to read. The figures are shocking, showing the continuing gap in life expectancy experienced by autistic people and people with a learning disability, and behind these figures are individual tragedies: too many people dying too young, many from avoidable causes. Within the report’s findings, the further increased risk of premature death for people in ethnic minority groups, and particularly those who are Black, Black British, Caribbean or African, is a huge cause for concern.

The report finds that care packages that meet individual needs, and appropriate use of Deprivation of Liberty Safeguards to deliver care, are associated with reduced risk of premature death amongst people with a learning disability. The same is true for appropriate treatment and prevention. While these conclusions are to an overwhelming extent what we would expect, it is important to have this evidence, and it should be acted on with urgency. It is good to see the many individual pieces of work taking place across the NHS to improve health outcomes, but there needs to be an overriding focus on system-level reform.

Although the report indicates that 8 out of 10 care packages reviewed were judged to meet the needs of the individual, and overall there is evidence of the quality of care improving, the proportion of reviews that found the quality, availability and effectiveness of care fell short of expected standards is still far too high (over 30%). It is also of great concern that in one quarter of cases, reasonable adjustments that should have been made were not made – although this too is improving, the proportion of failures to make adjustments remains unacceptable.

For the first time, the report includes data relating to the deaths of autistic people without a learning disability. At this early stage, the data is limited, but it highlights some significant differences in comparison with autistic people who have a learning disability.

Research has shown that almost 80% of autistic people experience poor mental health, and that autistic people are at a far greater risk of death from suicide than the general population. Although the number of LeDeR reviews carried out for autistic people without a learning disability was small and not representative, the highest number of reviews were for people whose cause of death was suicide, misadventure or accidental death.

The LeDeR team is right to be cautious about drawing conclusions, but it is equally important to note where the findings from this small sample reflect other research and the reported experiences of autistic people and their families. The lack of understanding and acceptance of autism, the frequency of diagnostic overshadowing, and the lack of appropriate reasonable adjustments, are all known issues in the healthcare system which the NHS and the Government must address.

It is vital to collect and improve this data, and to focus on the issues it has already highlighted, including the low proportion of reviews for autistic females. But it is more important still that the Government and health and care commissioners act now, with pace and focus, to address the unacceptable difference in life expectancy for autistic people and people with a learning disability.

The shifts in this year’s data are positive, but they are not the sustained, substantial improvement that individuals and their families need to see. We need Real Change, and this means addressing the underlying causes of system failure for autistic people and their families, and for people with a learning disability. This will require investment in the right care and support, in the right place, at the right time; strong accountability and a proactive approach to meeting legal duties; and an unrelenting focus on increasing acceptance and understanding of autistic people in public services, and across society.