Content warning: This post discusses suicide.
Background:
Autistic people are at increased risk of suicide compared to the general population. As a charity, we wanted to invest in suicide prevention, but it wasn’t clear what areas autistic people, and their supporters, would want us to focus on.
We therefore initiated a major project aiming to find out, from autistic people and their supporters, what needs to be prioritised to prevent suicide in autistic people. Some of the results from this work have been prepared in the form of two academic papers, which we wanted people with lived experience to comment on.
How this work empowered people to make more of a difference:
Being involved in this piece of work meant community members were able to share their views about academic papers before they’re published, helping to ensure the interpretation and communication of the results is acceptable to as many people with lived experience as possible. The papers will go on to guide messages to policymakers, as well as inform our next steps towards developing approaches to suicide prevention for autistic people.
What did we ask people to do?
We emailed members of our Community Network (known then as the Community Advisory Panel) who hadn’t opted out of suicide prevention communications (at that time 1239 people), asking them to express their interest in reading and commenting on an academic paper about suicide prevention. From the 174 people who responded (with experience reading academic papers), we selected 31 people from different backgrounds to take part.
We assigned people one of two papers and asked them to read the paper and then answer questions about the paper, explaining how helpful they thought the paper would be for autistic people and their supporters, if the language was respectful, and if they thought any statements should be changed. There was also a chance to give any other comments about the paper.
14 people submitted their responses, all of whom were autistic (9 with a diagnosis, 4 without a diagnosis and 1 person who thinks they might be autistic), 4 were also parents/carers/supporters, and 8 people worked with autistic people or in the field of autism (these groups overlap). One person reported having a learning disability.
How suggestions/responses were used in both papers:
- People who took part had experience reading academic papers and recognised that the language used was appropriate for a scientific paper. Once the papers have been published, we will add a link on our website to versions written for a general population audience. This will help to address some of the comments around tables needing to be ‘simplified’ and the language being too ‘academic’.
- Throughout the papers, “supporters” has been changed to “supporters/allies”. This was in response to comments about a power imbalance that is implied by using the term ‘supporter’.
- Based on some suggestions, some of the wording within the papers has been changed to improve clarity and ensure the papers are respectful. For example:
- In paper one, based on a suggestion, the authors added that the list of appropriate ways to prevent suicide in autistic people shouldn’t be perceived as an “exhaustive list”.
- In paper two, instead of saying participants’ responses “corroborate expert consensus”, it now says “academic consensus”. This is to address the comment that the original wording positioned participants as ‘outside the expert group’.
- The font was changed in the tables so that the quotations from autistic people didn’t appear less significant than those from supporters/allies. There has also been a line added explaining that “These font choices were made to most clearly bring out the contrast between participant groups and do not indicate lesser importance of either.”
How suggestions/responses were used specifically in paper two:
- Originally, the researchers included all quotations from participants and tried to handle the topic of self-diagnosis as sensitively as possible. However, following concerns about some ‘bold statements’ in the paper, which could potentially be ‘inflammatory’, the authors removed 11 statements about self-diagnosis from the table in the main paper. It’s important that scientists try to be as transparent as possible, and that they don’t seek to hide or distort findings as collected from participants. For this reason, the views are described in the text, but the strongly-worded quotations are included in the supplementary material – as such, nothing is hidden and readers can look for the original quotations if they choose to do so.
- To also address some of the concerns about the self-diagnosis quotes, the authors added ‘‘views may not be shared by the broader community of autistic people and those who identify as supporters and/or allies of autistic people”.
- The authors have added a discussion about participants who might have been under-represented in the research. This was in response to a comment that certain groups (e.g., autistic people with a learning disability) are excluded from co-production and co-design.
Autism Action’s learning:
We recognise the under-representation in our work and are planning to focus on expanding representation in our Community Network.
In future commissioning, we will also support researchers to improve representation in their research.
