Content warning: This post mentions child death, suicide and bereavement.
Background:
Every child who dies in England has their death reviewed – This is to understand what happened, find factors that may have contributed to the death, and identify learning that could help prevent future deaths.
The national forms used to collect this information are being updated and we, Autism Action, have been working with the National Child Mortality Database team as well as autistic professionals to help improve the process.
It’s already been agreed that every single child death review will ask whether the child was autistic and/or had ADHD or a learning disability. It has also been agreed that if these were confirmed or even suspected, the professionals completing the review will also need to complete an extra form that gathers details about children who had a disability, including a learning disability, and/or children who were neurodivergent.
We have also made some suggestions for improving the data about deaths of autistic children. At the moment, information about autism can be hidden in long answers and difficult to include in the national analyses. The new suggestions would make the autism information much easier to analyse and learn from. As well as working with autistic professionals throughout this piece of work, we also want to include the views of our network members. To find out what our network members think about our suggestions, we designed a short online form.
How this work empowered people to make more of a difference:
This piece of work was a chance for autistic people and supporters of autistic people to share their thoughts about our suggested changes for improving the information collected about the deaths of autistic children. This is important as better information means better learning and may save lives in the future.
What did we ask people to do?
We sent a link to a short online form to members of our Community Network from the UK who hadn’t opted out of suicide prevention emails (at that time 932 people). We explained how the information collected about the death of autistic children could be improved and asked people to let us know what they thought of our suggestions and why.
33 network members completed the form. This included 29 autistic people (27 with a formal autism diagnosis) and 12 parents/carers of one or more autistic people (these groups overlap).
How we used responses:
Which child deaths should trigger the additional form that collects information related to disability and neurodivergence
- 94% of people who responded told us they agreed that the additional form should always be completed when: the child was diagnosed as autistic, autism was suspected but not confirmed, and the child had been assessed and told they weren’t autistic.
Suggested changes for improving the information collected about the deaths of autistic children
- 79% of people who responded told us they thought it was very important or quite important for a child death review to record whether an autistic child attended an autism-specific school rather than only recording that they attended a ‘special school’.
- 100% of people who responded told us they thought it was very important or quite important to ask whether the educational setting met the child’s needs.
- 100% of people who responded told us they thought it was very important or quite important for a child death review to identify whether there had been disputes, mediation or tribunal (legal) proceedings about the child’s EHCP support or education placement.
Opportunity to explain answers
We also gave network members a chance to explain their answers. Some of the most common reasons for thinking the suggested changes were very important or quite important were: to help identify patterns, to identify unmet needs, for accountability, and to help lessons be learnt.
What’s next?
We’ve shared these findings with the National Child Mortality Database team to inform their final decision-making.
Another opportunity: We also asked our Community Network members if they were interested in sharing their experiences of seeking support as an autistic 16- or 17-year-old, or supporting an autistic 16 or 17-year-old to get support. We will contact everyone who expressed their interest and report on this separately.
If you’d like to find out more about opportunities to get involved in our work, and you’re not already a member, please sign up to our Community Network here.
