Autism and Suicide Awareness Training - webinar transcript

Watch this section of the webinar: 00:00 - 03:30

So welcome everyone to the launch event for the suicide awareness training for autistic people. Thank you all so much for taking the time to join us today and really giving up your lunch time to learn more about this necessary training. So my name is Alex Close, I'm the project manager at the Zero Suicide Alliance, and over the past year I've been working with people with lived experience, people at Greater Manchester, at Mersey Care, to develop this necessary and essential training course. In today's webinar we'll be sharing more about why and how the training was developed. During the session you'll also hear messages and stories from people who'll share insights and lived the experience. A lot of this will help highlight why this is so important, and why the issue of autism and suicide needs to be addressed.

I'd like to take the time to just tell everybody if you do feel like stepping away from the session because it affects you in any way please do so. Please look after yourself, we know that a lot of this content can be quite triggering and that some some parts of this session may be upsetting, particularly if you've lost someone to suicide. So please look after yourself. We will be sharing information in the chat about available support, helplines and such, so please feel free to contact these at any time. We have a couple of people on side who are going to be answering any questions - we won't be doing a Q&A in this session just because we've only got an hour today with you and it would take quite a bit longer because I know we're expecting quite a few people on this call today. So please send in your questions and we will either answer them directly on this call or we'll follow up afterwards.

So this slide looks at the agenda for today. So we will hear from quite a few people today. I will be hosting, and I'll be handing over to a few experts and lived experience advocates throughout the session. So I'll be sharing more about how we developed the training, I'll give you a little bit of a preview of the training later on in the in the webinar, and I'll also be telling you about some of the evidence base that we've based this training on. We'll also be hearing from experts like Sir Louis Appleby, Adele Owen and Mari who have worked with us in the steering group and have worked on suicide prevention nationally and regionally. We'll also be hearing person personal stories from Jav and Sue who've been involved in the Steering group. Jav isn't with us today, he is otherwise engaged, but we'll be sharing a video of his experiences and Sue will be sharing those live on the call today. So we'd like to thank everybody who's been involved in the training so far and please send in any questions as we go along in the call.

Watch this section of the webinar: 03:31 - 06:04

So I'm going to start us off - so I work for the Zero Suicide Alliance, and we are a suicide awareness and prevention initiative hosted by Mersey Care Foundation Trust (that's a mental health and Community Trust based in the Northwest), and we believe that one life lost to suicide is one too many. We offer free online training and resources that aim to educate, equip, and empower organisations and individuals to take action against suicide. We believe that everybody should be educated in suicide prevention tools.

So our training aims to help you see the signs - so to recognise why an autistic person might be feeling suicidal, and identify what you can do to help them. We want you to be able to say the words, so we want you to be able to talk to someone if you're concerned, and we want you to have the confidence and be empowered to say the word suicide. And finally, we want to empower you to support someone and to help someone stay safe for now if they are having feelings of suicide or having suicidal ideation. So we will share throughout the training available resources such as support lines and useful websites, but we will also teach, try to teach you, how to approach those conversations with empathy and respect so that person feels listened to and feels safe within the support that you're giving them. We know that the people who see and talk to autistic individuals regularly are the most likely to recognise the signs, and we have acknowledged this within the training. We have also included scenarios which look at how you would identify signs in a stranger or an acquaintance because we do believe that everybody has the responsibility to be recognising these signs and having these conversations. Next slide please.

Watch this section of the webinar: 06:05 - 08:54

So we're now going to go on to a video which Professor Sir Louis Appleby has provided to us. So he is the director for the National Confidential Inquiry for Suicide and Safety and Mental Health. He's also an advisor to the current government around suicide prevention and mental health, and he shared this video to go into why autism has been included as a significant risk factor in the recent suicide prevention strategy and that was only published in September 2023 so I'll let you listen to this video.

Hello good to be with you. About 6 months ago, the Government published its new National Suicide Prevention Strategy. Its message was that anyone can be at risk. That everyone has a part to play in prevention. But alongside the universal message, was a highlighting of people who were priorities for prevention. And for the first time, these included autistic people. To an extent, this was a reflection of evidence. Of higher risk, several times higher than in the general population. It was also a response to services for young people and mental health services who were saying that autistic people were a more prominent part of their suicide prevention work. Autistic people may face problems of emotional expression, of social interaction, of responding in a crisis. These are all important parts of emotional safety. And so staff are telling us that they felt they needed more skills in the recognition of autism and the assessment of the needs of autistic people. So that's where suicide prevention for autistic people begins, in an understanding of autism itself. But it isn't just that, it's also a recognition of the complexity of people's lives. Doesn't matter who you are, wherever you are in society. Suicide risk is influenced by a number of important things. Including whether you're facing loneliness or isolation. Whether you have a combination of physical and mental ill health. Economic adversity, particularly important at the moment. So suicide prevention for autistic people is not just about autism it is also about understanding the complexity of suicide is not one thing and suicide prevention is not one thing either. Enjoy your day.

Watch this section of the webinar: 08:55 - 14:12

We'd like to thank Louis Appleby for sending over that video. He is an incredibly busy man, but is very passionate about suicide prevention and particularly in this case for autistic people. And I like to hand over to Adele Owen who will explain why this training was commissioned by greater man Manchester NHS. Thank You Adele.

Well, thank you Alex. So as we said my name is Adele, I'm I work for NHS Greater Manchester as the suicide prevention and bereavement support program manager for the whole of our region, Greater Manchester region, and I oversee our 'Shining a Light on Suicide' campaign. Since I mentioned to others around the country that we were working with Zero Suicide Alliance to develop training focused on supporting autistic people and preventing suicide, there's been such a great interest for many from around the country, and this has only increased since autism was included in the National Suicide Prevention strategy shared last September. We've had so many people register for today, and it's been incredible and I suppose that just shows how important an issue this is to so many.

So why did GM, sorry, Greater Manchester Suicide Prevention Program, commission Zero Suicide Alliance to create this training module? Well we knew that Zero Suicide Alliance had successfully produced training previously, so in 2021 I attended a national suicide prevention program workshop and Sue Willgoss, who joins us today, spoke about her autistic son Daniel and his death by suicide. Her presentation was very powerful and it taught me a lot and it left a real impression on me. It's often the voices of those bereaved by suicide that leads to change and we should all be very grateful for their persistence through tragedy to see change happen. I asked Sue if she will be willing to share again at our own Greater Manchester suicide prevention steering group and she kindly accepted and we decided to dedicate our September meeting that year to focusing on autism and suicide prevention, and I linked in with Mari Saeki from our Greater Manchester Autism Consortium who'd also been considering how they included Suicide Prevention into their work. We were also, we also had doctors Jane Goodwin and Emma Neilson from Nottingham University at that meeting who talked about autism safety plans they were about to start piloting as well and it was a really great meeting. We have a large and diverse membership in our steering group and the impact of Sue's presentation, the impact it had on me when I heard it in London was shared by most in the room in that September meeting and we decided as a group to make autism a priority in our work in the year ahead.

Professor Sir Lewis Appleby shares a slide in some of his presentations, you can see it here, and it shows a rise in the number of people who are under mental health care dying by suicide who are diagnosed with autism and ADHD. There's a separate line as you can see for that. He believes the rise is probably the result of greater awareness of autism and ADHD by mental health staff, and therefore more an increase in diagnosis rather than the risk the rising risk itself. But it does mean that autism needs to be a growing part of suicide prevention efforts in mental health services and beyond as he referred in his (in his) short video.

Our intention in Greater Manchester in commissioning this training was to fill a gap we saw in autism focused training, which could be available to everyone and be free to access to increase awareness while building confidence in people to have these much needed suicide preventing conversations. We know more needs to be done in so many areas to help autistic people from receiving a prompt autism diagnosis to them being able to access support they may need throughout their lives, while reducing feelings of isolation and loneliness too. But hopefully this training will be a positive contribution and save lives. So my main ask of you today is please do complete the training your yourselves and please share it widely. Thank you.

Watch this section of the webinar: 14:13 - 26:31

Thank you, Adele. So how did we develop the training? So we're often asked about how we go about developing our training, and what I would say as part of the Zero Suicide Alliance is we are dedicated to co-design and co-production.

So the first thing we did when we were successful in the bid for this training, was establishing a representative steering group. So our steering group was a mix of people who were autistic, carers, and professionals who'd worked with autistic people, and those bereaved by Suicide of an autistic person. So their guidance throughout this process has been absolutely invaluable, and I'd like to thank them personally for their input during this time.

So secondly we look at the evidence base around it. So we've already been through some of the evidence base and we will go through a little bit more in this call, but we carried out a literature review on all of the existing research and available data, but we didn't think this was enough. So we went out to speak to people people who had lived experience with autism but also with mental health issues and suicidal ideation. More than 200 people shared their experiences with us during this the development of this course and I'm incredibly proud of that, as someone who's been involved in it and I think it's absolutely incredible that that many people felt inclined to share their experiences and I think it just highlights the point that this course is very much needed within not just Mental Health Services but across the UK population. So we gathered these views through questionnaires, focus groups and one to one conversations, because we wanted to make sure we were being inclusive with how we collected this data to make sure that people were comfortable with sharing their experiences with us.

So after we've done this we analysed the findings with the steering group and we identified different themes that we could address throughout the training. We then developed, reviewed and revised a script through a number of months, and once the script was finalised we worked with our online training developers Dynamic to film build and test the training course and that brings us to today - the day we officially launch this training with this webinar. And thank you for joining us for that.

So over the next few slides I'll share some of our findings and we'll hear a little bit from some of the people who have contributed to the course. So when we look at the research and data behind this training course, the statistics are quite harrowing. Suicide is the leading cause of early death for autistic people. More than six in ten autistic people have considered suicide. Three in ten autistic adults have attempted suicide, and autistic women are 13 times more likely to die by suicide. I think we need to take time to take that in, and it really demonstrates why we need to do more around suicide awareness and prevention for autistic people. So when we look at the reasons behind that, research shows that some of the challenges that autistic people face can contribute to suicidal thoughts or feelings. So some of these challenges can be Alexithymia, so that's a difficulty recognising your own emotions and being able to describe them to other people, and that is a challenge that many autistic people face. Then we have masking, so that's the tendency to camouflage or to cover up your autistic traits in public to try and fit in or cope or make yourself feel like you can fit into a social situation. There's then repetitive thoughts and unmet needs within support services. And all of these things were brought up within our questionnaire and focus groups and one to ones with autistic individuals.

So when we asked autistic people through our questionnaire how many of them had experienced suicidal thoughts, 94% of them responded that they had had suicidal thoughts, and that is a significant number proportion of people. While we know it is a small sample size I think it is good to draw from the experience of these people and to make sure that we take this into account. So 76% of those people had been asked directly if they felt suicidal, so in some ways that is positive that there are some people who feel confident enough to ask directly if someone is feeling suicidal, and there are people out there who are comfortable with saying the word suicide. But there is a significant gap there and what we're trying to do here is to make sure that people feel confident asking that question, making sure that they would speak to someone if they were worried about them taking their own life.

But I think it is extremely important that we take into account how we ask that question and that we do it with dignity, respect and empathy for the person who were asking it because we did find within our questionnaire that many people felt that they were being asked as a tick box exercise rather than an empathetic questioning. When we look at this, it is about how we ask the question and it is important that we think about how we make someone feel heard and let them know that they matter, and that is what our training is trying to do. It's trying to teach us how to express empathy in a way that it can be seen by the other person and the positives of doing that are helping people speak about their suicidal thoughts. So this person the quote here was extremely relieved when someone asked them about their suicidal thoughts and it's made an absolute difference in their life and it can actually save a life so so it's extremely important to take into account when we're asking questions about suicide that we do it in in the compassionate way that will make that person know that they matter.

So I realize this is a very overwhelming slide and that is for a reason because we know that suicide is complex and it's not it's rarely a result of one single reason. In our research we heard similar experiences and factors being repeated again and again and some of these are on the screen here. A lot of the time when people are experiencing suicidal thoughts it's a buildup of a lot of different factors and some of those are included on these slides. So feeling misunderstood, different, isolated, stress, sensory overload, frustration, trauma, grief, mental health, poor mental health, and exhaustion from constant masking. It's hard for me to say that so it must be difficult to feel.

So we're now going to share a few quotes from the feedback that we received to provide some insights from the lived experience that we based the course.

So I'm just going to go a little bit in more in depth about how we scripted and filmed the course. So we went through before, the fact that we analysed the research and questionnaire responses, and you've just heard some of them there. So when we were looking at this we also looked at demographics and risk factors and used this alongside the themes that we identified to develop ideas for scenarios. So the scenarios within the training are two people or more talking to each other and one of them is showing signs that they may may be having feelings of suicide and all of these ideas were discussed and refined with the steering group that I mentioned earlier. We then worked on a full script for training which went through several edits with input and feedback from the steering group and other clinicians.

Once we had that script, we then went on to film our lived experience videos. You can see some of the pictures from Sue's lived experience video there. We did this across the country. We, I'd like to thank Dynamic our development team our, yeah our e-learning development team because they did go above and beyond with this course. And we're extremely grateful for Jav and Sue who came forward to share their stories. We knew wanted to include real experiences as part of the training but Jav and Sue really went above and beyond again with sharing their stories and really what they've done for suicide awareness for autistic people. Once we've done all that filming, the course was built over the last couple of months and we've been testing and tweaking the training and preparation for today. So we'll now share a short clip of Jav who will share why he wanted to get involved in the training in the first place.

Watch this section of the webinar: 26:32 - 34:52

I volunteered to be part of this program was because I'm neurodivergent and I went through phases of difficulties going through services and facing difficulties in the community, and I think it's important the people see it, to educate people that are neurotypical to understand what it's like to be neurodivergent. When I had suicidal thoughts, at that point it felt that I couldn't express myself both like verbally emotionally I became significantly isolated. And I think the other issue was some words I know in English, and some words I know in my own language, yet I won't be able to paraphrase or translate them across because the words sometimes don't exist. It put on another layer of complexity because if I can't express my emotions or feelings it's how can I make people understand what I'm going through.

Neurodivergent people will communicate slightly different and you need to accommodate that or learn more about it, and I don't think there's enough information out there for people to fully comprehend what it means for a person to be neurodiverse.

Watch this section of the webinar: 28:43 - 34:53

So Jav uses the language in that video and neurodivergent throughout this call. We will be using 'the autistic person' (language) although we do understand that some people prefer to use different language and we haven't policed that because it is people's personal preference and experience. I'll now hand over to Sue, (who) Adele's already introduced Sue she is the person who inspired this training to be taken up, she is an absolute inspiration and she's here today to share her story and to share Daniel's story so I'm gonna hand over to Sue now. Thank you.

Thank you, Alex, lovely introduction. I'm Sue Willgos. I'm from Loftestoft in Suffolk and I'm mum to Matthew, Daniel, Jamie, and Elliot, and sadly we lost Daniel in 2018 when he took his own life. He had had a lot of struggles and people didn't listen really to me, and the night that he died I promised him that something positive would come from our loss and that I would make change, something had to change from what we'd been through with our own experiences. Consequently our mental health trust held their hands up and they said that they had failed Daniel, and I now work for them as an adviser for suicide prevention with lived experience. But I also do a number of other things, I've got a number of hats I wear including being a lived experience influencer for the national autistic (society), the National Suicide Prevention Alliance and I was given the opportunity to present last year at their conference. I've had the opportunity to meet with people, spoken with people at Westminster, MPs, and obviously that opportunity to speak at the National Suicide Prevention program Workshop where Adele then asked me to speak at at Manchester. And I've been given the opportunity to speak at many other places too.

Why do I do this? Because of Daniel and because of my other children. You know my all my all my boys, all of our my family neurodivergent so we're, I'm so keen that nobody else goes through what we did and that we spread the awareness. It's important to me that people are aware of the differences in communication and interaction the autistic people may have and that it's really really hard for many autistic people to describe their feelings, we've already heard a bit about that. It's really really important to listen to parents, to carers, loved ones, friends, whoever is the closest or the person that the autistic person might go to to share what they know because I could have shared so much about Daniel that may have helped him still be here today.

It's so important to be aware of those different presentations and hopefully the training, although it's only you know 30 minutes of your time, hopefully it will give you the skills that you might need to help and support an autistic person who may be in crisis. It may be that they don't look like they're in crisis because my Daniel here, you know pulling that face he is now, could have well been in crisis. He would mask really really well and he would present very matter of fact in the way that he would say that he was, he would never usually use the term suicidal he would say I want to go to sleep and not wake up and that was his way of saying help me. And it's just so important for people who are closest to an autistic person will know those subtle differences. I could see I knew when he was going downhill probably before he did, and to me I had so much information to give as well as his brother, he was really close to his brother Jamie, he would always want Jamie with him too, or Sam his one of his good mates. There would be enough of us that could have told somebody else just how how poorly he might be and those last few months that we had with him there were so many signs that people didn't acknowledge and respond to, including education. Daniel had an education health and care plan at the time we lost him and there is so much that people can do when our autistic people, children, are younger to ensure their needs are met and they don't go through the traumas that Daniel did. And many of our other autistic children do. We can give them a good start in life if we meet their needs as early as possible and acknowledge those differences and make our world a much more autism friendly world. Thank you.

Thank you very much Sue. We'll just take a moment to remember Daniel and think about how his influence is really spearheaded this program.

Watch this section of the webinar: 34:53 - 41:06

I'll now take you through a training preview. If you do want to step away for a minute just to recollect yourself this would be a great time because you can take the training in your own time and this is just a five minute preview of what you might see on the course. So this is just a little bit of an overview of what we have created based on the stories and experiences that we've heard what can you expect.

"Background information on autism and suicide risk."

"Tips to help you be able to recognise the signs and start a conversation about suicide with an autistic person."

"Four conversation examples with a sibling, friend, parent and an acquaintance."

"Videos from a bereaved mother and an autistic adult who share their experiences of mental health and autism."

"A directory of support available to both help you and the person you are supporting."

We will now guide you through four conversations using the steps see, say, support.

See. Recognise why a person may be at risk of suicide and identify some of the signs.

Say. Talk to someone if you're concerned and ask them directly if they're thinking about suicide.

Support. Help them stay safe for now and direct them to helpful resources.

A buddy will help you understand what's happening in each conversation and how you might respond in a similar situation. These conversations are based on real experiences of autistic people. They provide good examples of conversations with people who may be feeling suicidal. They are not the only way to deal with these difficult situations, but each example will show you how you could use the see, say, support model to help you support someone who was at risk of suicide.

Please select a scenario to continue.

Jake and Connor. Connor has just moved out of the family home for the first time his brother Jake notices he isn't acting like himself.

Aaliyah and Katie. Aaliyah has been diagnosed with autism in her early 30s she talks to her friend Katie about a difficult experience with her GP.

Alice an Aman. Alice and Aman both have autistic children. Aman seeks advice about how to support Jazz, his non-binary child.

Chris and Jenny. Jenny is a server at a local cafe and notices that Chris, a regular customer doesn't seem himself.

Chris is an autistic man in his 40s he lives alone and has recently been made redundant from his job following a company acquisition. He visits his local cafe every Saturday where he gets a cup of tea and a current teacake and he sits and he reads the papers or looks at his mobile phone. He's been doing this for over 3 years. Jenny is the coffee shop manager and only knows Chris from these encounters.

What does Jenny know about Chris? Chris is autistic. Chris wears a sunflower lanyard. In the UK these are sometimes warn by people with a hidden disability. For Chris this can help to discreetly let people around him know that he may have additional needs. After Chris had been into the cafe a few times, Jenny politely asked him about it to see if there was anything they could do to make his time in the cafe more comfortable. Chris was recently made redundant and is looking for a new job. Redundancy can be very scary. Changes to financial situation can increase stress anxiety and have an effect on mental health.

What does Jenny notice about Chris? Chris usually gets to the cafe at 9:00 a.m. every Saturday and always sits in the seat near to the counter. Today he arrives at 12:10 p.m. Some autistic people find having a routine comforting as it allows them to know what's going to happen every day. Changes to this routine can be distressing and cause anxiety or other changes in behaviour. The cafe is very busy and Chris seems very agitated. Chris usually arrives earlier in the morning as it's much quieter in the cafe and he prefers the peace and quiet. It's immediately clear to Jenny that Chris is affected by the Cafe being busier than he's used to.

Please note we use the term autistic people or autistic person throughout this training as this is the term more commonly preferred by autistic people. This is based on current guidance from the National Autistic Society. Some of the external resources may use different language.

So that's just a short preview of the training. So that basically what that's took you through is just a short bit around the scenarios.

So when we were carrying out the research originally when we started scripting for the training we did realize that this course was going to be a little bit longer than our other courses because we wanted to make sure that we could include a scenario around parents who were supporting each other, somebody who was looking after a stranger or acquaintance, a family member and a friend. We wanted to make sure we had that rounded view around it, so this course could take you up to an hour if you choose to go through all of those scenarios, but you can choose to just do one, or to just watch a couple of the videos and take the training at your own pace. So the course takes up to an hour and you will get a certificate at the end of the course, this will download onto your browser.

Watch this section of the webinar: 41:06 - 44:36

I'll now hand over to Mari who is also part of our steering group and works for the National Autistic Society, she also works with Greater Manchester. She couldn't join us today but she wanted to share a message on behalf of the steering group.

Hello my name is Mari Saeki and I'm the Project Lead for the greater Manchester Autism Consortium Project, which is part of the National Autistic Society. I'm sorry that I couldn't be here today, but I just wanted to do some thanks on behalf of the steering group. There are so many people who have been involved in the development of this training, in particular I want to thank the 200 plus people who took the time to share their experiences and hopes through the survey and some focus groups. The various clinicians who consulted with us from Mersey Care and across Greater Manchester, the team of e-learning development company Dynamic, and the NHS greater Manchester Suicide Prevention board who commissioned and funded this training. I'd also particularly like to thank Jav and Sue who shared their personal stories. It's been a privilege to hear those stories and I'm just so grateful that they've shared those so generously. Also thank thank you and all to my colleagues from across Greater Manchester and Mersey Care who were also on the steering group.

I was keen to get involved in this work because for a number of years we've been concerned in Greater Manchester and increasingly aware that autistic people are at greater risk of suicide. I was really pleased when the GM Suicide Prevention board decided to make this a priority and obviously even more delighted when they agreed to fund this training. What I've learned through this process is that suicide and talking about suicide is everyone's business, and we have to find a way to talk about it honestly and openly. Sometimes people think that working with autistic people there's some kind of magic formula or special way that they have to have very specialist training on. What I hope most people will take away from today's training is that what you really need is to show compassion and interest and I hope if you take nothing else away today you just remember to show kindness. Thank you.

Again thank you to Mari she's been involved from the beginning. And I think that message about kindness is something that she's carried throughout the development of this course and I think is the main takeaway from this training.

Watch this section of the webinar: 44:37 - 47:56

So what do we hope that people will take away from today. So we want you to be in empowered to act, to educate yourself and keep learning from others and about others. We want you to better understand autism and suicide but we want you to keep an open mind because we know that things change and people change as they grow. We want you to equip yourselves and others with the skills to make a difference, we know that a conversation can save a life and one life lost to suicide is one too many. So if we take away all these three messages we could save a life.

So what's next. So we're about to make our training live on our website, so we will be sharing a link to that within the chat's function before the end of this call, and we'll be sharing that with all of the people who signed up to this call and weren't able to make it. We are also currently have a, are running a fundraiser until the end of May so we can translate this into British sign language because we don't, we want to make sure that this is accessible as possible.

So we would like to thank everyone who's already donated to this cause and if anybody would like to donate we will be also sharing that fundraiser within the chat. I hope you found today's webinar interesting - we'd love to hear feedback about today's webinar and hopefully you found that we've shared interesting and insightful facts and insights into suicide and autism. If you have any questions feedback or would like to receive a copy of the communications toolkit for this course we've included a short online form in the chat. I'd like to just thank again Sue and Jav who have shared their experiences on this on this course and on this call today, they have been absolutely in instrumental to the development of this training. I'd also like to thank everybody who was on the steering group and who helped us shape this training as we went along long. And finally I'd like to thank those 200 plus people who took the time to tell us their experiences so we could develop an authentic course that really worked for people who are struggling with suicidal thoughts and really helps people understand how to display kindness and compassion to people who might be struggling.

I'm going to leave you today with a thank you from Jav and he will finish the webinar today with a message of hope. Thank you.

Watch this section of the webinar: 47:58 - end

The one message I'd like to give for people viewing this video or this and doing this training, don't be afraid. Ask questions. Even when you think that person's not engaging, you'll be surprised how much information they taken because you might not put the same reaction if you talk to and you're a typical person but don't be afraid like ask questions this is the start of a journey for you to be a better person for yourself and to help society.