Sadly, autistic people are at higher risk of suicide than non-autistic people. In non-autistic people, men have a significantly higher risk of suicide than women, but in autistic people, the risk is similar across genders. When researchers say that autistic women are the highest-risk group for suicide, this means in comparison to non-autistic people, rather than in comparison to autistic men.

When researching suicide in autistic people, it’s important to consider that many people may be undiagnosed. Researchers looked at people who had been hospitalised after a suicide attempt or were considered high-risk for a suicide attempt. They were screened for autism, and 11-15% of them met the criteria for an autism diagnosis, even though none of them had been previously diagnosed. (Takara & Kondo, 2014; Ryden et al. 2008).

Sarah also spoke about a study she led interviewing 400 families of people who died by suicide. The family members reported high autistic traits in 41.4% of the people who died. (Cassidy et al 2022).

These numbers are alarmingly high, considering only 1-2% of the population is autistic.

The best autism research listens and learns from autistic people's experiences. Sarah stressed the importance of working together with autistic people, and learning from their lived experience to keep research relevant and helpful. Sarah said:

“Because previous research and policy kind of decisions, they're very rarely made with or for autistic people. They're made by non-autistic people. And therefore the research that gets done and the policies that get made miss the mark a lot and don't necessarily address the issues that are important or useful or acceptable to autistic people and those who support them. And that can slow down our progress.”

In 2021, Sarah and her colleagues reviewed the existing international research and policy on suicide in autistic people. They found:

•Little research on risk/protective factors and suicide prevention/intervention strategies in autistic people.

•No relevant government policies for suicide prevention in autistic people.

Sarah said: “Despite being a very high-risk group, autistic people didn't have any kind of policies or government strategies or healthcare strategies on a national level in any country to help address and try to lower and prevent this risk.”

Building on a series of workshops and webinars with autistic people, Sarah and her colleagues developed the INSAR policy brief. This policy brief created an overview of the existing research on suicide in autistic people and outlined the community priorities for addressing this issue.

This policy brief fed into the Government's five-year suicide prevention strategy, published in September 2023. Sarah said this was a great start with high-level aspirational aims, but what is crucial is working out how to get there.

Over the past few years, Sarah and her colleagues have worked with autistic people and their families to develop research priorities in this area. Building on workshops funded by INSAR, and priority-setting exercises funded by us, Sarah and her colleagues have identified 10 research priorities. The most pressing being, “What barriers do autistic people face when seeking help, which might put them at greater risk of suicide?”

As a non-autistic autism researcher, Sarah stressed the importance of hearing from community members to help find these answers. She used part of the webinar session to gather thoughts and ideas from the webinar audience. She asked the audience the audience to feed into a Padlet and answer:

• What does ideal support for autistic people look like?

• How can we implement effective preventative support from the point of diagnosis/identification?

• How can we support autistic people to recognise when they are in crisis and seek help?

Introduction

[00:01:15] Georgia: Welcome to today's webinar. My name's Georgia Harper, I am the Policy Manager at Autistica, and I'll be the host for today. We're lucky enough to be joined today by Sarah Cassidy, who will lead today's webinar on Influencing Suicide Prevention Policy in Partnership with Autistic People.

For those of you who are new to us, Autistica is the UK's leading autism research and campaigning charity. We create breakthroughs to enable autistic people to live happy, healthy, and long lives. We do this through research, shaping policy, and working with autistic people to make more of a difference. A big part of that is sharing the latest research and evidence-based practice, which is what we're all doing here today.

Before I hand over to Sarah, I do have some webinar guidance to share with you. Live captions are available on Zoom by pressing the CC button on the menu bar. That will depend on your device, but for most people it should appear at the bottom of your screen. If you have questions, you can use the Q&A function, which is also in the menu bar, and you'll get to as many questions as we can after Sarah's presentation.

The webinar is being recorded and will be shared on Autistica's YouTube channel later this week or early next week. And finally, the topic today is a very difficult one. We encourage you to take a break if you need to. Again, the webinar is being recorded. You can come back later. And if you do need to speak to someone, please do reach out to a trusted person or contact Samaritans.

The phone number is 116 123 or you can email jo@samaritans.org. Okay, thank you. I'll now hand over to Sarah.

Sarah Cassidy: Thanks so much Georgia and thanks to Team Autistica for inviting me to do this webinar and also to everybody joining me here today. It's really appreciated.

So the idea of this webinar really is for me to speak as little as possible and that's what I'm going to aim to do because I want to spend most of the time discussing, getting your feedback, your views that will help to feed into the next stages of our work and to answer your questions.

So I'm just going to give a very brief background. about the available research evidence regarding suicidal thoughts and behaviours on autistic people, what we did in our priority setting exercises, what did that actually entail, and what has been the impact of that work on policy so far. And then I want to spend as much time as possible really discussing what needs to happen next and there's opportunity for everybody in the audience to get involved by giving your anonymous answers to three questions and I've got them listed here and they were sent around in advance as well.

If you don't feel like you've got enough time, because we're only going to have five to seven minutes for people to write in their anonymous answers, please don't worry, because I'm going to leave the Padlet open for two weeks after this webinar. So if you don't feel like you've got time or space or feel time pressured to come up with answers to those questions, or you want to amend your question or add other things, Then just keep a note of the QR code and link.

We're going to send it around afterwards with a copy of the slides. So if you need a little bit more time to think about your responses, there will be plenty of time for that. So if you just want to sit back and listen. And think and ask questions in this webinar and think about these afterwards, then that is totally fine.

Then I'm going to talk a little bit about what will happen after the webinar. So why are we doing this? Why am I asking you for your views and what will that help make happen after.

So, suicidal thoughts and behaviours in autistic people, what do we know? Well, we know now, from a number of international studies, and a number of studies that have looked across whole populations, that autistic people are very sadly, more likely to die by suicide than non-autistic people.

There's a significantly increased risk and the highest risk is in autistic people without co-occurring intellectual disability and particularly in autistic women as well and that's compared to non-autistic women. So what that means is that autistic men and women are at equally high risk of dying by suicide. This is a different pattern to in the general population where men, non-autistic men, in the general population are significantly more likely to die by suicide than women, whereas this gender difference doesn't appear to be the case in the autistic population.

So when we say the highest risk of death by suicide in autistic women, we mean compared to non-autistic [people]. And we know that this increased risk of suicide amongst autistic people has been found in a number of countries in Australia, the US and Canada, to name a few. And we're also finding the same pattern in the UK as well.[05:00]

And just to reiterate, autistic men and women are both at similarly high risk of suicide. But the gender differences, particularly in the autistic women, are significantly more likely to die by suicide than non-autistic women, because they're that gender difference that we see in the general population disappears in the autistic community.

We also know that 1% of the population is autistic, approximately. More recent prevalent studies have shown that it's higher than this. But even considering that, we know that autistic people are overrepresented in groups at high risk. for attempting suicide and dying by suicide, regardless of whether they have been diagnosed or not.

So I'm going to show you a few statistics to illustrate that. So in 11-15% of patients who have been hospitalised for attempting suicide and are at risk for attempting suicide, in depressed patients and patients with borderline personality disorder, when studies have assessed all of those people for autism.They found that 11 to 15% of those people met criteria for an autism diagnosis, but they hadn't yet been diagnosed. So that's a really high percentage of undiagnosed autistic people in the highest risk group for attempting suicide who didn't previously know that that they are autistic.

41.4% of people in a study I led recently in the UK, where we interviewed friends and family of those who died and looked at medical records and coroner's inquest records, found a really high percentage of those people had high autistic traits, indicating possible undiagnosed autism. So 41% of people who die by suicide in the UK might be autistic, and haven't yet been diagnosed.

And similarly, about 41% of people who have attempted suicide at some point in their life who don't suspect that they might be autistic, who don't have family members who are autistic. They've nevertheless report significantly, clinically significantly high levels of autistic traits, indicating that they may possibly be autistic, but not yet diagnosed.

And in a systematic review where we looked at all the available studies on this topic, we found similarly high rates of suicidal thoughts and behaviours in autistic and possibly autistic people. So those are people who self-identify as autistic but aren't yet diagnosed. So it doesn't seem to matter, or it's very high, similarly high rates of suicidal thoughts and behaviours, regardless of whether a person is diagnosed or self-identifies as autistic or is later diagnosed as autistic.

So we need to think of supports, interventions, research for autistic people who are diagnosed and those who are not yet diagnosed and those who may not even know or suspect that they might be autistic. We need to reach all of these groups of autistic people.

So we know that autistic people are at increased risk of suicide compared to non-autistic people. But when we looked at the available international research and kind of policy relevant to this. We were quite surprised that there's very little research on suicide and autistic people. And particularly what we don't know about, although there's a lot of research on the scale of the issue, which is very important to show that autistic people are at increased risk, including undiagnosed autistic people.

What we don't know is what kind of increases or decreases that risk. What are the risk and protective factors and what kinds of prevention or intervention strategies should we be developing? What are the service gaps? What can make a real difference in supporting autistic people? What are the best times to step in and help an autistic person to prevent or lower their risk of suicide? Very little research available on that.

And what we're very surprised about is that there was nowhere in the world, in no country, no relevant government policies for suicide prevention, which mentioned autistic people. So despite being a very high-risk group, autistic people didn't have any kind of policies or government strategies or healthcare strategies on a national level in any country to help address and try to lower and prevent this risk.

[10:00]

So we thought, well, we must work with autistic people and those who support them to set those future research and policy priorities. Because previous research and policy kind of decisions, they're very rarely made with or for autistic people. They're made by non-autistic people. And therefore the research that gets done and the policies that get made miss the mark a lot and don't necessarily address the issues that are important or useful or acceptable to autistic people and those who support them. And that can slow down our progress.

And that's why we thought it's really important to work in partnership with autistic people from the start to make sure that the kind of research that gets done, the kind of policy recommendations that get made actually take into account the views of those affected so that they're more useful and don't miss the mark.

So what do we do? Well, we started off with some funding. I got a post-doctoral research fellowship. This is very early on in my career, around 2016, 2017, where I got a post-doctoral research fellowship from the Economic and Social Research Council to set up the mental health in autism project.

And I ran some workshops as part of the research that I was doing that was developing. A new mental health measures with and for autistic adults to better capture depression, suicidal thoughts and behaviours in autistic people. And I got together a number of public engagement events, two workshops where I had equal representation of autistic people their family members, researchers, clinicians, service providers, and charities.

And I just discussed with them very openly: What kind of research do you want to see? What kind of practice changes do we need to make happen? What kind of policies would be useful? I just identified very broad topic areas from those two workshops.

And then, I was very fortunate to be supported by the largest autism-specific conference in the world. It's predominantly a research conference and it's called INSAR, the international society for autism research. And they hold an annual meeting and I was supported by them to run the three special interest groups. And these are really great events because it brings lots of people from all over the world interested in a particular understudied topic, discuss what should be the next steps for this topic in terms of research policy practice.

And in the first year, we had quite a small group attend. So 40 people attended, but in year three, we had over 100 attending, showing the growth in interest in this area. And we didn't just, although it's a predominantly research conference, we didn't just have researchers attend.We also had autistic people, autism advocates, family members, charities, and some policy makers as well from the U S and other countries who are really interested in this area. And we managed to hone down a number of interesting discussion points and ideas.

And after that I was also very fortunate to get funding and support from Autistica, to take forward the questions that we developed and identify hone these down a bit more and identify 48 questions and some policy and practice recommendations. And we did that in association with an independent organisation called the James Lind Alliance Priority Setting Partnership. And the James Lind Alliance specialises in bringing together researchers with those affected by the research topic, in this case autistic people with experience of suicidal thoughts and behaviours and identify priorities for research in particular, but also they supported us with organising the discussion so we could get some policy and practice recommendations related to the research priorities.

And 40 autistic people and those who support them, equal representation of both groups, attended that meeting. And then after that, I got some funding again from the International Society for Autism Research, Lind Alliance who independently facilitated this work. And that was to write an INSAR policy brief and that enabled us to do a few more studies to take forward those 48 questions and policy and practice recommendations.

We had a large online survey with 788 autistic people and those who support them, a majority of those who took part in the survey were autistic. They ranked those 48 research questions online and produced, gave us kindly more policy ideas. [15:00] And then, in a meeting with 30 autistic people and those who support them, again, equal representation of those groups, they identified the top 10 research priorities and some key policy asks.

So a lot of work and a lot of consultation over a number of years with support from a lot of organisations, which we're very grateful for developed top recommendations and a policy brief. So these are the top 10 kind of research questions that we designed together through this stakeholder kind of exercise.

But the top one was "What barriers do autistic people experience when seeking help, which might put them at greater risk of suicide?" [There were a] number of questions about risk and protective factors, about being believed, understanding differences between the nature and experience of suicidal thoughts and behaviours in autistic and non-autistic people, how we should best assess people how should we develop interventions etc. And you can see how these research questions also directly relate to our policy asks and really important areas to develop practical recommendations. And we, in particular, focused on the top one about barriers.

So in our policy brief, we discussed, well, it's going to take quite a long time to get funding and develop research addressing this. So what can we do now? What kind of recommendations can we make to policy makers now before the results of longer-term research become available so we can make a difference sooner? And these are the recommendations that we put in our policy brief to policy makers about this top priority, about removing barriers.

And it included things like:

- Identifying autistic and possibly autistic people as high-risk groups for suicide, suicide prevention policy and clinical guidelines. Because that hadn't happened yet.
-Develop partnerships with autistic people and those who support them to ensure that future and policy and practice is appropriate.
- Having legislation requiring mental health services to provide autistic people with services for co-occurring conditions. Because what we're finding in research and from the experiences of people who took part in our survey about what needs to change, we know that there's a service gap where autistic people are being referred out of mainstream mental health services that don't necessarily have, the necessary autism expertise, who should go to an autism specific service, but there isn't one. So autistic people are falling through the gaps and not getting the support that they need.
- Improving systems of autism diagnosis across the lifespan, but not just that.
- Also providing appropriate post diagnostic mental health treatment and support post-diagnosis, because a lot of autistic people were telling us in our research, and again in our online consultation survey, that this just wasn't happening. You just get your diagnosis, you're given a leaflet, and that's it. Like what happens next? Well. There isn't anything.
- Also developing guidelines to ensure that service providers actually recognise high risk for suicide in autistic people and giving them the necessary knowledge and skills to provide appropriate treatment and support. Because we understand that because there's such a lack of research, a lack of interventions and evidence regarding what support looks like, ideal support looks like and what will work. We need to change that too
- Empower clinicians and services to be able to better support autistic people as well.
- Developing accessible and personalised support and treatment because there isn't a lot of research regarding that, and not a lot of options yet available; and
- Developing accreditation to recognise the mental health service providers who excel in the successful support of autistic people was another widely endorsed suggestion to try and help change things.

So we published our policy brief here's a copy of it and I've got a link to it at the end if you want to learn more about it and read it yourself. We shared it widely with policy makers and were approached by NHS England saying that there was an opportunity to feed into areas in the next suicide prevention strategy that's published every five years by the Department for Health and Social Care. [20:00]

It's an important government policy document. It highlights a number of high-priority areas for the government to tackle with regard to suicide prevention. And really delighted to say it's a really big step for us that this new document, the most recent version of this that was published in September 2023, finally recognises for the very first-time autistic people as a high-risk group for suicide.

Autism and autistic people has its own section. In this report, and it doesn't only recognise diagnosed [00:21:00] autistic people. Because of the research that I just outlined at the beginning of this presentation, that also undiagnosed autistic people are a high-risk group for suicide. So we don't only need to help diagnosed autistic people because we know that diagnosis can take a long time, really long waiting lists, a lot of barriers to getting a diagnosis.

We also need to help undiagnosed autistic people, including those who might not yet know that they're autistic. Because we know from previous research that that is also a high-risk group as well. It also recognises that we need to improve access to autism diagnosis and mental health support post diagnosis and also before diagnosis.

And it also recognises that we need to consider results of ongoing trials, of and research looking at what ideal support or personalised support might look like. And one example of a study that we've just completed actually, but it was still ongoing at the time of publication of this report is considering results of autism-adapted safety planning research, for example.

And more participatory research to inform suicide prevention policy, which is really excellent because the government is realising we need to continue to work in partnership with autistic people to make sure that the research, the interventions, the recommendations being made, they don't miss the mark. That they're doing helpful things that are acceptable to autistic people and those who support them as well.

So this is all good. This is a really good step that the government has made this recognition important, but there are some issues. The policy is very high-level aspirational aims and there's nothing particularly wrong with that. We want to be aspirational. We want to know where we want to be. The problem is that there isn't much in the policy about how we get there.

So how do we actually achieve these things? So we know we want to have better autism diagnosis and better support. But how will we achieve that? And what will it look like?

And if we don't do that work and make the recommendations to answer those questions, then what we found from previous kind of experience of the autism strategy and other policies, particularly relevant to autism, is that things don't change. And in some instances, they can get even worse, so we need to continue to work with autistic people and those who support them to help develop those recommendations and the good time to do it. Well, the best time to do it is now and to continue that work.

We've made policymakers aware that there's an issue and the kind of things that need to change, but now we need to work together to tell policymakers about exactly what changes need to happen. And make sure that any kind of services that we get as a result of the strategy actually reflect the needs and priorities of autistic people and those who support them, so we don't end up with something that doesn't work or isn't acceptable or that we you know, really don't like.

So this is where I'm going to try and stop talking. Because in order to do this, there's no good in me deciding what the support should look like as a non-autistic researcher. I need the help of you. an input of autistic people and those who support them to begin this process. Much like we did for the first set of recommendations to get to the next stage. We need your input.

So I'm going to start with three questions and the reason that I chose these questions was on consultation with some of the people who took part in the initial stage of the exercise, also with colleagues at Autistica as well. And also building upon the work that we've already done because they relate to the priorities that we've already found but I want to really focus on how we can make the suicide prevention strategy aims a reality.

And I think in order to do that, I really need to know, well, what does ideal support for autistic people actually look like? [25:00] How can we actually implement effective preventative support from the point of view of diagnosis or identification? It's not only being diagnosed, but self identifying as autistic before a diagnosis, or even if A person chooses not to be diagnosed but prefers to self-identify given all the difficulties in getting a diagnosis.

And how can we support autistic people to recognise they are in crisis and seek help? So I'm going to go through each question in turn. There's going to be five minutes about to focus on each question. There's going to be some space to ask questions through the chat, enter anonymous ideas on Padlet.

And like I said at the start, if you've joined more recently, Don't worry if this is all a bit too much to kind of race noting down your answers within that five minutes. These padlets are going to be open for two weeks. So, if you just want to sit back, listen, think, ask questions, and then fill out the Padlet afterwards, within the next two weeks. That's totally fine because it will still be available. So, this is the QR code. And also there'll be a link posted in the chat Q&A, so that you can click on it and access the Padlet. So, you can scan it on your phone. or click on the link. You can use anything. You can use a phone, tablet, computer, any is totally fine.

And it's completely anonymous. Your name won't be posted or anything like that. All you do is click on the plus button. I've got it highlighted with a red box around it, and then you can just add your anonymous ideas to each question.

So the first question, let's spend five to seven minutes. having a look at this. Have a look at the Padlet. You'll be able to see what other people are posting. You'll be able to comment, like things. But what do I mean by this is a very open question and I appreciate that, but I think it's important to be open to get your ideas, but there are no right or wrong answers to this. Everything that you say will be useful.

And you'll also notice on the Padlet that there's a final section saying, If I've missed anything, or you think that these questions are just not the right questions, then please feel free to post your feedback. Post your own questions and say, “I don't think you should be asking this. I think you should be asking that.” That's really useful. So there's a fourth column for that too.

But what do I mean by this question? The suicide prevention strategy says that post-diagnostic support and mental health support needs to improve autistic people. How should this ideal support? What should it look like? What kind of ethos should it have? What should it include? What would you like policymakers, services, practitioners to know about how to best support autistic people experiencing suicidality?

So, put your feedback in that Padlet about what you think ideal support for autistic people should look like. [30:00] I'm going to stay silent for three more minutes to give people an opportunity to put their ideas into the Padlet.

Thank you everyone. I'm sure that you're still putting new ideas or just having a think about that previous question. Just had a look at the time and we should probably carry on to the next one.

So this one's about how can we implement effective preventative support from the point of view of diagnosis or identification that includes self-identification.

So self-identifying as autistic, or perhaps suspecting that, or might be autistic but not yet diagnosed. I've had to think about what ideal support for autistic people might look like, but how can it actually be implemented? So ,what would you like policymakers, services or practitioners to know about how to best implement support for autistic people before reaching crisis point?

What I mean by that is not just thinking about, well, how can we implement it at crisis point where the person has reached suicidal crisis, but how can we actually prevent that happening? Things like maybe supporting, employment or education or anything else that could help prevent an autistic person reaching that crisis point.

So not just thinking about what crisis support looks like, but things that could help before, way before, or prevent that from ever happening in the first place. What kind of things do we need to implement to look at suicide prevention? Not just helping people when they reach that point, but actually stopping that happening in the first place.

I will stop talking for about three more minutes just to give people an opportunity to fill in their ideas for this section as well.So somebody asked in the chat if there's a link to a Padlet for the second question. All of the questions are on the same Padlet. So if you follow the link, You'll see all of the questions and you'll be able to add comments under each question, but it's all the same link.

So thanks for everybody who's added their thoughts so far. That's really great. So I'll go on to the third question. How can we support autistic people to recognise when they're in crisis and seek help. This is a really big theme in previous research and was also a big theme in our consultation exercise as well because research shows autistic people can find it difficult to identify and know when they're approaching crisis and seek help.

And this is what our autism adapted safety plan study tried to address by helping autistic people to know when they're approaching crisis and seek help. But there might be lots of other strategies available as well that we haven't thought of that could also be useful.

So let us know your suggestions from research, lived experience, clinical experience anything which has helped yourself and or others to help identify when they're approaching crisis and to seek help.

So I'll give three minutes for everybody to put in their ideas for this third question. And remember that there is a fourth column for questions that we've missed or things that we think that we should be looking at, but aren't in these three questions.

Thanks so much, everyone. Quite a few comments and ideas have come through, which are really useful.

So what will happen next? Why are we asking you for this information? Well, we're going to write a summary of this workshop, the kind of things that I've talked about, and the recommendations overall, and the ideas submitted

[00:40:00]

And that summary will be shared with everybody who attended this webinar and more widely including funders and policymakers. It would be shown in terms of groups of individuals. So the kind of themes that have emerged and anonymous kind of quotes, but that will really help us shape the next stages of our research and policy impact work. It will really help us to support funding applications for future workshops to further develop and expand on the ideas submitted today.

We found that really useful in our previous work and it will help feed into guidelines for policymakers, services and practitioners to help them actually implement that recent suicide prevention policy with and for autistic people. So it help us, it's on a long road to the next step. So thanks so much for for taking part.Thank you also to everybody who was involved in the initial, stages of the work. It was a real team effort. It involved a lot of organisations, a lot of people over a thousand people taking part and joining me on this journey. And thanks for continuing the journey with me.

I've also got links if you want to know anything more about the suicide prevention strategy the information about our INSTYLE policy brief, a copy of the policy brief, more information about how we actually undertook the exercise in lots of different formats including kind of video summaries and things, and a copy of the link to our website that's got details of our research, all of our publications, and all our resources, just to reiterate again that those Padlets will be open for another two weeks. So if you want more time to think and you want to add to it at later date, or if you're looking read, listening to the recording of this webinar and still want to take part, then hopefully there'll still be opportunity for you to do so. So I'll stop sharing my screen.

And I'm open to any questions that people have.

Georgia: Perfect. Thank you so much for that, Sarah. That was really interesting. It was great to see some of the discussion on Padlet as well. So if you do have any questions, please put those in the Q&A button at the bottom of your screen. We've had a few through already.

41.4% stat, is this focused on traits or people with a diagnosis?

[35:00]

Georgia: So first of all, the figure you mentioned at the start of the webinar 41.4% of people, I think that is possibly, like, people who die by suicide who could be autistic. Does that include those who already had a formal diagnosis of autism at the time, or was this more, more focused on traits?Sarah: No, it's more focused on traits. So that figure does not include those who were diagnosed as autistic before they died. This is looking just at traits. And I can't remember exactly how many, but quite a few were on the diagnostic pathway before they died. I know that much.

Georgia: We've had another question through that says, I'm currently a law student considering working in the court of protection. I was wondering if there were any resources available so that I can best support my autistic clients.

Sarah: Yes, there are. And this isn't a particular kind of focus. So I'm going to go through some examples of my research specifically, but there's really brilliant research by somebody called Katie Maras looking at how to support autistic clients in lots of different areas of anything involving law and courts. So I could point you towards their research. They've got some really great practical guidance.

Georgia: Thank you. And then we've had a question through about LGBTQ+ autistic people in particular an area this person says that many autistic people say to me is sort of sexuality issues. And do you have any information research and so on about suicide and LGBTQ+ autistic adults? And to what extent does the the suicide prevention strategy focus on this group.

Sarah: That's a really excellent and important question. It's something that has been understudied, but it needs to be studied. And that is something that was discussed in our priority setting exercise, but it was as part of the risk and protective factors and discussion. But gender really, and gender identity really came into that as well.

We know from our research that we've had a much higher rate of LGBTQ + genders taking part in our research compared to the general population. But there haven't been, to my knowledge, any specific studies on it yet, but they really need to happen.

Georgia: Did any of your research indicate an increased risk of crisis with alexithymia? It might be helpful actually for those who don't know to explain a little bit about what alexithymia means.

Sarah: Yeah, so alexithymia is difficulty in describing and identifying your own internal emotional experiences.And it sort of feeds into, and it's been a really key part, like theme of our research in particularly autistic people, saying things like, well, I don't know how I feel on a typical day. So I don't really know if I'm approaching crisis and that's a real difficulty because I can just, it just happens explosively in the moment. And I don't really know how to cope with it and I can't really pre plan what will happen.

And our safety plan study tries to develop cope, co-develop a way. of working with autistic people to help them identify those warning signs for suicidal crisis and come up with a plan to help them keep them safe.

So that is a really important point. I don't think it's been explored in a specific study, although it has in the general population. There's so many things, there's so many risk factors that we know are factors in general population, but haven't yet really been explored in autistic people. So a lot of research about the why and the risk and protective factors, really still needs to happen, which is why it's on that list of top, research questions that are really important that autistic people and those who support them who've been prioritised, but we definitely have found it as a theme in our qualitative research and in our safety planning study.

And also when I was developing the suicidality assessment tool with them for autistic adults as well, that came up as a theme. So I do think it's really important, but again, to my knowledge, a quantitative study that has actually looked at the correlation again, hasn't really happened yet.

[40:00]

Georgia: We've also had a question through about autistic people with eating disorders. And we know that, for example, anorexia was especially prevalent in this group. Are you aware of any research in terms of the links between sort of autism and eating disorders and suicide?

Sarah: I do know of some really excellent work by Will Mandy and colleagues that have looked at I think it's actually funded by Autistica some really excellent work looking at the prevalence and nature of eating disorders in autistic people and how best to identify and treat eating disorders in autistic people.

But again, as far as I know, there hasn't been kind of risk studies looking at, whether autistic people with co-occurring, eating disorders and a whole host of other disorders actually, like mental health conditions, how that increases risk of suicidality. There have been a few studies that have looked at mental health problems such as depression, anxiety camouflaging and other mental health conditions, but I don't know if it's included eating disorders specifically.

Georgia: We've had another question too from a mental health charity that are seeking to adapt their suicide prevention program to meet the needs of autistic people. They've said while our program is holistic, our main offering is group therapy and the social aspect may be a barrier. How do you think they could ease that transition into a sort of community setting for autistic people?

Sarah: Well, one of the things that came through on the Padlet that I've heard a lot of other people also suggest is peer support. And also, I think offering, and this is what we find in our research as well when we're doing our safety plan study and other studies, is offering different ways to access support. Because one size won't fit all, and some autistic people may actually really benefit from and like, small group sessions with other autistic people experiencing similar things.

Those kinds of peer support and social support groups can be really beneficial. We run a social support group at our university for autistic students. And it's really popular as a group. So it's more about offering choice. And different kind of ways of accessing your service. So that might be on a one-to-one basis. It might be online. It might be a text-based service or a text chat like an online chat might work for some people. It's about offering choice.

But I would say involving autistic people in what that kind of support looks like, maybe having autistic people who are already involved in your service, who have some suggestions about how it might be how it might work for different people with different kind of access needs would also be a good idea. But just keeping an open mind and not making any assumptions about what might and might not work.

Georgia: Thank you. And similarly, we've had a question through about suicide crisis hotlines and the support that they may or may not offer for autistic people. For example, this person says we communicate differently and require questions that are direct and not laced with context. What sort of experience the people you work with have had with those kind of helplines and do you have any advice in terms of how to adapt those?

Sarah: Yeah, so, I think that's a really good question as well and it sort of needs its own study because we don't have, a study about what the best access, would be, but some of the kind of general really useful feedback that we had through our priority setting exercise is, and it was actually included in our policy brief.

Is that picking up the phone and having conversation with somebody can be really difficult really anxiety provoking and just having some alternatives to that. So being able to text, for instance. Can be a lot easier rather than, having to pick up the phone and speak to somebody.That was the main theme, and I think it's been shown in quite a few other studies as well.[45: 00]

And there might be other things like, say for instance, with some, kind of suicide prevention hotlines, it, it might be that people over the phone ask very, are trained to ask very open questions very open. And that can be really difficult as well. But again, working in partnership with autistic people who have experience of accessing that service and have some suggestions about how you can adapt those questions or other kind of ways of accessing the service, I think is really important.

Georgia: Thank you. And I think probably the last question we've had a question through around trauma and neurodiversity and how is how is trauma informed practice essentially being explored within this research? That's really important. And again, a really under investigated area.

We're at that stage of the research. So for a lot of these kinds of answers, say that's a really excellent question. It's something that we need to do. But there's just so, there is so much more to do trauma in autistic people post-traumatic stress disorder. And all of these things are really under investigated in autistic people, the research is only just starting to be done.

But I know for really at least one excellent project led by a colleague Don Adams in partnership with other colleagues at Strathclyde University, looking at the intersection between suicidal thoughts and behaviours in autistic people and trauma using art=based methods, which is really interesting. But I think, I just think it's a really important point and something that needs to be explored as part of, what does ideal support look like?

Georgia: Thank you. And I'm afraid that is all the time we have for today. But thank you so much for all your questions. They really do allow us to dig a little bit deeper into such an important topic and thank you for all of your participation on the Padlet as well.

I think that's going to stay open for a little while longer if you do have any additional thoughts. As I mentioned earlier, this is a really difficult topic and I encourage you to take a short break after the session, do whatever helps you to reset, whether that's going for a walk, having a cup of tea, whatever helps you.And if you do need to speak to someone, please reach out to a trusted person or contact Samaritans, that's 116 123 by phone, or you can email jo@samaritans.org, that's j-o-@samaritans.org. You can also refer to the resources that we're going to be sharing through the mailing list after the session.

All that's left for me to say is a huge thank you to Sarah for sharing your work with us today and for answering the questions so thoughtfully. It's been an absolute pleasure having you with us. Thank you so much, everyone.

Sarah: Thank you.