Voices For Suicide Prevention
Voices For Suicide Prevention
What If Calm Is A Warning Sign: Autism and Suicide Prevention
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Autistic people are at higher risk for suicidal thoughts and behaviors, yet too many support systems still treat autism and mental health as separate worlds. Stepanie and Scott sit down with Lisa Morgan, an autistic adult and founder of the Autism and Suicide Prevention Work Group, and Dr. Brenna Maddox, a clinical psychologist and co-chair of the work group, to talk about what that gap looks like in real life and how to close it.
We unpack how language preferences differ, why a strengths-based view of autism matters, and how the social model and neurodiversity-affirming care can replace the harmful idea that autistic people need to be 'fixed'. Then we go straight at the misconceptions that can increase suicide risk, including the dangerous habit of skipping suicide risk questions just because someone is autistic. We also explore a theme we hear again and again: invalidation. Not being believed can be constant, and it can push suicidal ideation higher.
Our conversation is very practical too. Some warning signs can look different for autistic people, including intense internal crisis paired with a calm exterior, and alexithymia that makes emotions hard to name. We point listeners to autism-specific crisis support resources, including guidance for using the 988 Suicide and Crisis Lifeline and tools like a reasons-for-living worksheet that can help even when therapy is hard to access. If you care about autism suicide prevention, share this conversation, subscribe for more, and leave a review so more people can find these resources when they need them most.
Welcome, Guests, And The Stakes
SPEAKER_00Welcome everyone to this episode of Voices for Suicide Prevention. As we like to say, our conversations are real talk, real honest, real life. I'm Scott Light, and I'm Stephanie Booker.
SPEAKER_03Today we are diving into a very important topic. It's the connection between autism and suicide prevention. To give a little context, research shows that autistic individuals are at a higher risk for suicidal thoughts and behaviors compared to their non-autistic peers. Despite all of that, there's still a really big gap in awareness and resources.
SPEAKER_00And fortunately, Stephanie, we are joined by two experts today to talk about a lot here. So let's introduce you to them. Lisa Morgan is here. She is founder and co-chair of the Autism and Suicide Prevention Work Group, and Dr. Brenna Maddox, co-chair of the work group and a clinical psychologist. Welcome to you both. Hi. Lisa, let's begin with you. Would you share a little bit more about yourself? Tell us about you, your family, and why this topic, why this issue is so important to you.
SPEAKER_02So I am an autistic adult, um, diagnosed later in life at 48 years old. Um I was a teacher for most of my adult life and have a uh master's in um special education. I'm working towards becoming a licensed clinical social worker right now so that I can support autistic people individually. But I'm most passionate about meaningful crisis support and suicide prevention um for autistic individuals. And the topic is really important to me because I am a suicide loss survivor. I lost a nephew to suicide in March of 2015, and three months later, um, my husband of 30 years died by suicide. And there were really no resources or support that I understood. Um, so the first thing I did was publish a memoir to help other autistic people who went through the same experience I did, and then I started to work towards getting more autism-specific support by founding the Autism and Suicide Prevention Workgroup.
SPEAKER_03Wow, thank you so much, Lisa. We appreciate you sharing that. And Brenna, what's your background and how did you come into this work?
SPEAKER_01So I'm a clinical psychologist by training. And one interesting thing to note, when I was going through my graduate training for clinical psychology, I was specializing in autism, autism and mental health, actually. And even with that specialty, I learned very little, if anything, about suicide risk and suicide prevention for autistic people because it just was not being studied or being talked about that much. It's really been in the last 10 years or so that we've seen an increase in research in this area. So I graduated with my PhD in clinical psychology, admittedly, knowing very little about suicide prevention or crisis supports for autistic people, but I had this passion for improving mental health for this population. And so it was actually during my postdoctoral research fellowship where I was interviewing autistic adults about their experiences with mental health services generally. So nothing specific to suicide, but asking them about their experiences with mental health and their recommendations for improving mental health services for autistic adults. And spontaneously during these interviews, multiple participants were bringing up their experiences with suicidal crises, um, suicide attempts. And I've felt like I had no idea what to do. And so I Lisa's heard this story so many times at this point. I, you know, did what anyone probably would do in that situation. I went to Google and I Googled crisis supports for autistic people. And I was so lucky to stumble across on the very first page of those Google results. I saw the crisis supports toolkit that Lisa had developed with the work group. And we'll we'll talk some more about those resources in a minute. But that was the first resource developed by the work group, and it was exactly what I needed in that moment, just full of practical information about how to support autistic people in crisis. And so that led me to reach out to Lisa and learn more about the work group, um, later join the work group. And then, of course, such an honor to be invited by Lisa to be a co-chair of the work group with her. So that's really my journey into this specific area of suicide prevention and autism.
Language And What Autism Means
SPEAKER_00Hey, no shade to Google. I hop on Google. I mean, Dr. Google, it it comes through most of the time, right? Absolutely. Yes. Uh let me ask you both uh kind of a level setup, maybe a little bit of a clearing question here in terms of language as we begin our conversation, because preferences uh have changed over the years. I can remember years ago, nonprofits dedicated to to autism, advocacy, education, and and the preference then was to say a person with autism. And Lisa, you said as we started, uh I think you said an autistic individual. Help us understand which is appropriate or okay when we're talking about this.
SPEAKER_02There's really no um set appropriate way of talking. It's really preference. So the the kindest thing to do is to ask an autistic person how they want to be identified. I prefer identity first language, but some people may um you know prefer person first language. So asking is exactly the right thing to do.
SPEAKER_03So let's talk about for those who may not be familiar with autism, how how would you describe autism to someone who does not understand?
SPEAKER_02Autism is really a different way of um experiencing the world. I mean, it is a neurodevelopmental spectrum condition, but um it's typically just it's a different way of communicating, a different way of understanding language, a different way of understanding, you know, interacting with the environment. Um there's differences in, you know, um sensory, um, routine-based behaviors. It's just it's a really a difference in being.
SPEAKER_01I would add to that, um, you know, thinking about differences, absolutely. Lisa described those very well. Um, we also talk a lot in our work about taking a strengths-based approach. Um, and there are so many autistic strengths, just meaning strengths that many autistic people have. Um, so many autistic people are very detail-oriented, um, which can be amazing. I know I have many autistic collaborators. This is a huge strength when we're working on a project together, having their detail-oriented strength. Um, autistic people are often very honest, which we'll we can talk some more about. That you can leverage that if you are trying to support someone, you know, asking them about suicidal thoughts and behaviors, um, having that strength of honesty. You can trust their answers. Um, autistic people are often very creative. So we we go on and on about this. I know we're short on time, but I think remembering those strengths as well is important when thinking about autism.
SPEAKER_00Well, let's keep talking about that. I'm uh I have to picture, I still think uh analog a lot of ways. So I'm picturing kind of a piece of paper in my mind, and if it's divided in half, and you've got one side that says the medical model when it comes to autism, and then maybe the other side of that piece of paper is more on the behavioral or social model of autism. Can you both talk about kind of differences between those two?
SPEAKER_02Sure. Um, so the medical model is really based off of the criteria in the DSM 5, the Diagnostic and Statistical Manual of Mental Disorders version 5. It's and it's so it's it's deficit-based. It's kind of the opposite of what Brandon was just talking about with the strengths of autistic people. So the medical model looks at what's wrong and how autistic people you know don't really kind of measure up. And it looks at what's it what looks at what's wrong and really wants to find a cure to fix autistic people. That would be the medical model.
SPEAKER_01Lisa, do you want to describe the social model a little bit?
SPEAKER_02So it would be strength-based, but it's also really accepting the differences, accepting how autistic people do communicate differently, experience the world differently. Um, so it would be acceptance instead of a cure. It's understanding, you know, the culture of autistic people, seeing them as competent and valuable, being curious about autism and wanting to learn more.
SPEAKER_01I'm really glad you brought up the autism culture piece, Lisa. That's what I was just thinking about as well. The importance of if if you're a non-autistic clinician or person supporting an autistic person in crisis, bringing that cultural humility to the table is so key because as a non-autistic person, you're never gonna have the knowledge or understanding of what it's like to be in this world as an autistic person. Um, you can learn, you can learn a lot, but you have to come to the table with that humility. And the word Lisa used about being curious, you know, being curious and wanting to learn more about the culture. We, you know, we learn a lot about cultural competence and cultural humility as um mental health professionals, and it's just extend extending that, I think, and thinking more about the autism culture.
SPEAKER_03That's an interesting way to look at it. So is there a particular one side or the other side that's right or wrong? Or are we looking at, I mean, can is there a cure for autism? Are people actually looking for that? Is that is that something that needs to be looked at? I'm just kind of curious when we're talking about the the medical model versus the social model.
SPEAKER_02Well, to me, looking for a cure for autism would be telling me that there's something wrong with me. And I feel I do struggle with communication differences. Um, you know, there's definitely challenges with being autistic, definitely struggles with being autistic, but it's who I am. So I it would be like trying to cure me. So I don't look at it that way.
unknownYeah.
SPEAKER_01Yeah, I I think there's a big movement in the field to have that lens of the social model and move away from the medical model, and that's hard, right? When most professionals out there have been trained up in the medical model. So it's a big mindset shift, but we've seen positive movement in that area. Um, and I think Lisa just brought up a really important point. Sometimes when people hear about the social model, or you maybe have heard of um neurodiversity affirming movements. Um, sometimes people have the misconception that that mindset is only focused on the strengths and isn't aware of difficulties or challenges. Um, and again, that's a misconception. Lisa just brought that up. It's not saying that, oh, autistic people have no challenges. There are challenges that are inherent. Um and non-autistic people also have challenges too. So um it's really again taking that that um more open-minded, I think, approach. But yes, to answer your question, I think the the social model is really where we should be focused.
SPEAKER_00I don't say this in a in a trite way at all, but uh I I think autism is having a a zeitgeist moment a little bit because it's it's it's part of conversations now. And that that's a great thing to be talking about it in uh halls of Congress or with you know major studies that are going on here and in Europe, uh studies that have been going on on for decades when it comes to autism. In that light, uh because there is uh again a lot of talk, a lot of chatter out there, um, is there anything that we need to talk about here to to demystify or or debunk?
Suicide Risk Myths And System Silos
SPEAKER_02I think one of the biggest things is that um you know, the communication piece, where there are some autistic people who don't communicate verbally, who are very intelligent, very gifted, very, you know, or just you know, just regular people. Um and you know that that communication piece, I think even with people who are verbal, you know, it's it's it's we're it's a sticky part where we're misunderstood. And I would love to have people just take the time to find out how autistic people communicate. It's gonna be probably probably be different for every autistic person, but it's it's important as well when talking about crisis support and suicide prevention.
SPEAKER_03Is there also a misconception when we're talking about autism and a connection to uh mental health challenges and um also suicide specifically?
SPEAKER_01Absolutely, yes. Um I can speak a little bit to that um and then turn it over to you, Lisa. I think some of this misconception, just to provide a little context, it really does stem from how professionals are first learning about autism and how our systems are set up here, at least in the United States, where the developmental disability system is very separate from the mental health system. And, you know, as a clinical psychologist, I learned about autism in grad school because I was specializing in that. But a lot of my cohort mates did not learn much about autism. That wasn't a real core part of our clinical psychology training. Again, speaking to this kind of siloed approach of, oh, you've got mental health and then you have developmental disabilities or autism. Um, when in fact we know that autistic people are at an increased risk of having a co-occurring mental health condition compared to non-autistic people. So that knowledge about autism plus mental health is so important. Um so, in terms of suicide prevention or suicide risk, um, there's been some work out there showing that professionals think, oh, you know, if this person's is autistic, that means I don't really need to ask those suicide risk screening questions. That it's a reason not to ask the questions because of some of these misconceptions, when in fact we know that being autistic is a risk factor for suicide. So if anything, you it's more important to ask those screening questions if you're working with an autistic person. Um but I think there are just these misconceptions out there about um, yeah, some of these communication differences and um whether an autistic person can have suicidal thoughts and behaviors. And we have a lot of research now to to show that unfortunately autistic people are at are at an increased risk for suicidal thoughts and behaviors. So we just need to get that knowledge out there, increase, increase that awareness.
SPEAKER_02One of the challenges for autistic people, due to a lot of what Brandy just said, is not being believed. So that's you know, part of the misconception results in autistic people not being really uh believed when they reach out for support.
SPEAKER_01And I'll put a quick plug-in. Lisa is leading a research study, uh a survey study that found the experience of invalidation, which I feel like is part of what you're saying, Lisa, right? Not being believed, being invalidated. Um, invalidation is a risk factor for suicidal thoughts and behaviors in autistic people. And it is such a common experience to be invalidated. And so, as a professional, you know, you you are in this role where you you could be the person to validate what they're saying or what they're telling you. You could believe them, and um that that would be very supportive and protective.
Invalidation And The Work Group Response
SPEAKER_00Let's pick it up from there. Tell us more about that survey, that study, Lisa, if you would, and also broadly uh tell our audience more about autism and suicide prevention work group. Uh love the mission statement here. Support the autism community in all issues of suicide.
SPEAKER_02Sure. So the study, um we did a it's qualitative study. Um we uh had 106 participants and 92% of them said that invalidation increases their suicidal thoughts or you know, suicidal ideation. And it really comes from everywhere. So family, friends, colleagues, um, you know, bosses, people at a store, you know, it just it come it can come from anywhere. You can experience it multiple times in a day.
SPEAKER_01I can speak a little bit to the the mission statement that you mentioned, and then Lisa, if you want to talk some about the origin story. Um, one main way that we are working, working with that mission in mind, is developing and disseminating autism-specific suicide prevention resources. So, as I mentioned before, finding the crisis supports toolkit through the Google search is what led me to the work group. That was the first of many resources. I believe we're at nine resources now, and we've got another five in the works, um, and a new edition of our warning signs resource also in the works. Um, so we just have this amazing group of um brilliant clinicians, researchers, um, individuals with lived experience, and um overlapping roles amongst many of those individuals as well, working together to develop these resources based on um lived experience, research, clinical experience. And then, yeah, we're working together to get those out there, um, whether that's through trainings. Lisa and I love to do trainings for various organizations and audience types, um, or getting them out there at yeah, conferences, um, social media, all of that.
SPEAKER_03That's great. And among the work group's members is Dr. John Ackerman of Nationwide Children's Hospital. He's a friend of OSPF and this show, certainly. And and Lisa, tell us a little bit more about, you know, you said earlier, you know, some of the whys of why you're in this um this type of work. What about the autism and suicide prevention work group? How did that all come together?
SPEAKER_02Well, it started in the summer of 2017. Um, I wanted to do more about supporting autistic people in crisis. And so I started emailing suicide prevention organizations in the US and asking them if they'd be interested in starting a conversation about autism and suicide. Honestly, I didn't hear back from anyone except I might get like a vague, polite email, not really answering my question, not picking up the invitation. And then in August of that summer, a new executive director started at the American Association of Suicidology, um, Colleen Crichton. She answered my email with interest and actually began right away setting up the first meeting. So then we had some meetings. Um, John Ackerman was there right from the very beginning. Um, and then in the uh conference um in 2018 at the AAS conference, um, we officially started the Autism and Suicide Prevention Committee, which turned into a standalone work group. And that's how it got started.
SPEAKER_01I I love just thinking back to the this was before my time with the work group, but yes, hearing Lisa talk about John Ackerman and these early days of the work group. Yeah, there are people like John, part of the workgroup now, who've been there from the beginning. Um, and then we've also had quite a bit of growth in the last couple of years. We've had people reaching out to us, you know, asking about joining the work group. Um, we've had some wonderful collaborators join. And one thing that we've really kept in mind is we want a very good representation of autistic people with lived experience. And so um I'm just thinking about some of our autistic work group members who have really led, you know, either the development of new resources or yes, getting funding for new projects. So we've got a really amazing mix of work group members, most from the US, although we do have um representation from Denmark. Um, and then Lisa and I also collaborate with a couple of really brilliant folks in the UK on one of our resources as well. So just a breadth and depth of experience, and really everyone's coming together. You know, it's a volunteer. Work group. Everyone's very busy with their, you know, full-time jobs and they still come together. They work on these resources. I feel like it's the kind of group where we're all listening to each other and learning from each other. So we get, yeah, we get a lot done and we still have a lot to learn, a lot to do.
SPEAKER_00Well, and you're officially international with UK and representatives from Denmark. That's fantastic. You also may get a little bump in inquiries after this podcast gets uh goes public. So can can other volunteers join?
SPEAKER_01I think we're always open to hearing from folks. Lisa and I try to be mindful as the co-chairs, you know, balancing growth with stability. Um, so we kind of have to assess month to month. We don't we don't want to grow too quickly, um, you know, too fast, too quickly. Um, but we're always open to hearing from people. Um, as I mentioned before, Lisa and I also do a lot of training. So if there are folks you know listening who are interested in learning more about this topic or checking out our resources, we we can share that website. It's pretty, pretty easy to remember, um, autismcrissupport.com. Um, you can find all the all the resources there and a way to to reach out if you have feedback about those or any questions.
Warning Signs And Alexithymia
SPEAKER_03Well, and you have some great resources on that website. And and one in particular I thought was really important for us to to talk about uh while we had you is understanding the warning signs. Um are there things that people should be paying attention to that might look a little different for someone who is autistic?
SPEAKER_02Yes, um, definitely. Um so some warning signs for the general public, um, general population are actually aspects of autism. Um so we do have a resource that speaks to that. But I I think the most important concern is how many autistic people experience a crisis crisis internally and look calm and fine on the outside, and there's really no outward display of emotion, which can result in um you know not being believed um and you know thinking that they are fine and there's no crisis when everything is happening in internally. Um so we do have what Brandon had just talked about, the one we're updating right now, you know, that speaks to to that piece, but that's a really important thing to know when supporting autistic people in crisis.
SPEAKER_01And I would say coupled with many autistic people um experience something called alexithymia, which means uh difficulty identifying and describing one's own emotions. So I know clinically I've worked with many individuals um who may not be able to identify, I feel anxious or I feel frustrated, you know, I feel excited. It can be both pleasant and unpleasant emotions that are difficult to identify. Um, they may be able to say, I feel bad, or as Lisa's saying, they may kind of be shutting down and there's a lot happening internally, but externally, they actually appear quite calm. Um, so I just agree with that point, Lisa, that it's so important to um look for changes from baseline, if you know um what the individual's baseline looks like, and then listen to them, trust what they're saying, even if what they're saying, if they're if they're telling you about being in crisis, even if that doesn't match up with what you're seeing.
Crisis Tools Including 988
SPEAKER_00I'm curious if someone, when someone, when an autistic individual is in crisis, what about resources out there for them? What uh my wife and I have some some dear friends um with a son with autism, and and they talk about the resources cliff that basically after high school and and and a and a two or three year post-high school program, but basically when their son, you know, hit his early 20s, the the cliff hit. And they really had a they they struggled with finding jobs, activities, things that he could participate in.
SPEAKER_01Yeah, that services cliff is real, and I think it's slowly improving. We're we're seeing some shifts in terms of more attention and more funding going toward adult services, but you're absolutely right, Scott, that for so long um all of the focus was on childhood, as though children do not grow into adults. It's not like someone turns 18 and woof, there goes, you know, there goes their need for services. So um I think we are seeing some positive shifts. Um, we definitely have resources on the website with that in mind, with this idea that we know many autistic individuals don't have access to a therapist or another mental health professional for various reasons. And so, for example, I'm thinking of our reasons for living resource, Lisa. Um, we know that having a list of reasons for living is a really powerful suicide prevention strategy. Um, and oftentimes a therapist would be helping their client develop that list, but we developed a one-page resource to help autistic people who may not have a therapist kind of walk them through that so that they could could hopefully come up with that that list on their own if needed. Um, or or the clinician could use it as well to to facilitate that process. Um, so that's one resource that could be helpful.
SPEAKER_02Our 988 resource, which helps um autistic people to know what to expect when text call or chatting 988 for support. Um kind of really that's basically what you know the the resource does in many ways. It just sets the expectations, tells them what's going to happen. Um it's it's really to help them to have a successful support and intervention.
SPEAKER_00As we start to wrap up our conversation, is there anything else, Lisa or Brennan, you'd like to just let our audience know of what you'd like maybe a parting thought uh to our audience today?
SPEAKER_02I think my parting thought would be um if somebody is autistic and comes to um comes to you for support, believe them. Um even if they don't look like they're in distress or you know, emotionally dysregulated, um, their words have to have more meaning and you know, more um weight than their external um distress.
SPEAKER_01And I'm thinking about the importance of individualizing our supports and services, which really professionals are doing that all the time. And sometimes we'll hear a lot of anxiety actually from mental health professionals who maybe have not had a lot of training in autism. You know, they don't feel equipped to support autistic individuals in crisis. And I think remembering that most professionals know how to individualize, learn about the person you're working with, knowing that every autistic person is different, right? So there's a saying, many people have said this if you've met one person with autism, you've met one person with autism. So just because you know something didn't work with one autistic client doesn't mean it wouldn't be helpful with someone else. You just really have to take the time to learn about their preferences, their priorities, um, what's going to be effective for them and make sure that it's individualized.
SPEAKER_03Lisa Morgan and Dr. Brennan Maddox, thank you so much for this important conversation with us today, and for the work that you and the Autism and Suicide Prevention Work Group are doing in this space. We really appreciate you.
SPEAKER_00And to our listeners, thank you as well. When you listen to our episodes, you break stigmas, break barriers, and you care about mental health and saving lives. This is Voices for Suicide Prevention, brought to you by the Ohio Suicide Prevention Foundation.