Dr. John Ackerman, Nationwide Children's Clinical Manager for the Center for Suicide Prevention and Research joins Dr. Jamie Jones, Clinical Supervisor at Boundless Health, for a broad and frank discussion on mental health and suicide prevention, with special attention paid to those with intellectual and developmental disabilities. Both John and Jamie discuss effective ways to have tough conversations on these subjects with people you love. Host, Scott Light, also asks them about the state of mental health in America: what concerns them? And what gives them hope?
Dr. John Ackerman, Nationwide Children's Clinical Manager for the Center for Suicide Prevention and Research joins Dr. Jamie Jones, Clinical Supervisor at Boundless Health, for a broad and frank discussion on mental health and suicide prevention, with special attention paid to those with intellectual and developmental disabilities. Both John and Jamie discuss effective ways to have tough conversations on these subjects with people you love. Host, Scott Light, also asks them about the state of mental health in America: what concerns them? And what gives them hope?
Hello, everyone. We're starting off our main podcast with this question to our two guests. John to you first, the state of mental health in America is blank,
Dr. John Ackerman:I'd say urgent. There's a sense of urgency that we have lots of kids struggling right now. And we need to do things about it, or we have lots of opportunities to do that.
Scott Light:Okay, Jamie, same question to you. The state of mental health in America is
Dr. Jamie Jones:worsening. It's seeming to be worsening, especially after COVID restrictions.
Scott Light:Okay. We are starting with that very question because May is Mental Health Awareness Month and there are events programs, awareness campaigns happening across Ohio, and across the country this month. We certainly want to do our part with this episode. Welcome, everyone to season three. We're already in season three of wellbeing a podcast brought to you by boundless. Boundless is a nonprofit that provides residential support, autism services, primary health care, day programs, counseling and a whole lot more to children and adults. Our mission is to build a world that realizes the boundless potential of all people. Let me introduce you to the voices that you just heard. Dr. John Ackerman is a child clinical psychologist and manager of the Center for suicide prevention and research at Nationwide Children's Hospital. And Dr. Jamie Jones is a clinical supervisor here at boundless Welcome to both of you.
Dr. John Ackerman:Welcome. Thanks for having us.
Scott Light:It's good to have you both. So let's expand on your answers about mental health. What I asked you just a moment ago, Dr. Ackerman, you said the word urgent. Can you expand on that just a little bit more?
Dr. John Ackerman:Yeah, I think, as Jamie just mentioned, we have significant needs across the boards across all demographics, ages, developmental levels. And we've seen things that were challenging prior to the pandemic and trends in terms of mental health, depression, anxiety, and suicide that were of real real note and in need of attention and, and lots of different innovative models to help move things forward. And we have opportunities and technologies and ways of intervening that are advancing. But we need to be more urgent, and we need there to be policies and support and funding, all in that direction. So we need some more engagement in all of our sectors to make sure kids are getting what they need.
Scott Light:Dr. Jones, you use the word worsening, if you would expound on that a bit.
Dr. Jamie Jones:And I really liked John's word urgent. I think they go hand in hand. With COVID, the pandemic, every one was more secluded, it was harder to get support. And since then things are opening up. But there is an increase in need and a decrease in providers available to to help them. So things are worsening, not just in the sense that more people need help, but in the sense that there is there are fewer supports out there for them. And as John mentioned, we really need more support in all of the sectors to be able to provide the supports that people need.
Scott Light:We're going to talk about those supports as well. Let's talk about a couple of maybe a couple of bass lines here about mental health for those with intellectual and developmental disabilities. On the Omaze website. It says that approximately 1.5% of all Ohioans are diagnosed with an intellectual disability and approximately 1/3 of those individuals have a co occurring diagnosis of mental illness. So a dual diagnosis. Jamie, do you first are those numbers fairly accurate? And then be the next layer? That question is, what are the challenges with a dual diagnosis,
Dr. Jamie Jones:they sound fairly accurate, but they might be lower than what is actually happening. A lot of people with developmental diagnoses might not understand that they can have a dual diagnosis. So that can limit their likelihood of seeking help for other mental health difficulties. And there are a lot of challenges that come with a dual diagnosis. So not only does someone have developmental challenges that can make it harder for them to communicate harder to do their daily living tasks, but they have mental health challenges that are also impacting their ability to go through their day complete tasks motivate themselves to to live their lives to the best that they can. So it just impacts them even more.
Scott Light:I read a couple of things in anticipation of both of you as our guests and I read a couple of things about about medication masking so medications can can minimize symptoms of a psychiatric diagnosis and also communication deficits, you may have an individual that may not be able to accurately report his or her symptoms,
Dr. John Ackerman:whether it be communication challenges, challenges in problem solving, or sort of being really inflexible and thinking and certain young people with with developmental challenges, that also plays into several of the diagnosis that we talked about whether it's anxiety or depression, having black and white thinking, having catastrophic thinking like things are never going to go my way. Feeling like it's more difficult to motivate someone who's has real needs, but is is sort of not always well equipped to take advantage of the treatments that are there. And I think that goes to Jamie's point of needing more providers who are skilled in helping families and, and individuals achieve their goals. So dual diagnosis, I just think, in general, is taking something that is already complex, like needs that are already complex, and adding layers of mental health challenges on top of that, and I think people just hopefully can realize that there are a lot, a lot of work needs to get done to help help folks meet their needs in those situations.
Scott Light:Speaking of help, what about the caregivers and guardians out there that are taking care of folks with a dual diagnosis, trying to treat those symptoms? What kinds of resources do they need
Dr. Jamie Jones:a lot of resources. They have their own challenges as a person, so many caregivers that that we work with, they might have their own mental health challenges that if they're not taking care of themselves, it makes it much harder to take care of other people, including their loved ones. So one, they need those resources to be able to care for themselves. A lot of times, they're so focused on helping their child that it's harder to focus on themselves harder to look for other resources. So they need those supports as well, where they have someone who can help direct them to the resources that are that are in their community.
Dr. John Ackerman:And maybe I can just add, I mean, I'd love to send out validation to all those caregivers who are engaged in caring for someone with intellectual disabilities, or autism or other challenges. It's a hard, hard task. It takes lots of love lots of specific training, and emphasis on what do I do to manage this chronic health condition? And what do I do to be most effective, and sometimes being most effective means getting through difficult times, and it's just, uh, just want to empathize with what a challenging thing it can be to do that work. But it's, I'm always impressed by folks who, you know, engage in that day to day work with sort of energy and love that, that, you know, needs to be boundless, right?
Scott Light:We say this often on this podcast, and we should, there was an executive from the Ohio State nursing school who said this at a public forum, she said self care shouldn't be selfish. And that applies to all of us, right. But it especially applies to those, like you Bo said, who are taking care of others with with special challenges with special needs. And we've got to take care of those, we've got to take care of those folks. And they need to they need to have the resources to take care of themselves.
Dr. Jamie Jones:Exactly. Yeah. And I think for some individuals, it can be really hard to ask for help. So I just want all caregivers to know that it's okay to ask for help from your loved ones from from other providers, that asking for help doesn't mean that you're not doing a good job, you're doing a great job. But extra help will give you that support that you need to better care for yourself to better care for your loved ones.
Dr. John Ackerman:And I can add that I think a lot of parents feel like they can't take time for themselves or their natural role is in the name caregiver, I provide care for others. The research is actually super clear that if you aren't engaging in self care, you're not going to be as available emotionally or as effective. There were some interesting studies in specifically with parents have depressed children. And they found that even when the kids got the best possible treatment, a version of cognitive behavioral therapy in a trial, that if the parents did not get their own self care and their own support, and they remained in a depressed state that the kids themselves even though they got temporary benefits. The benefits are very short lived. So the idea that it's selfish to take care of yourself means that you're you're neglecting the idea that you're part of a system where part of a family or a network and, and you know, if everyone's not taking care of themselves, then it's not likely to be sustainable. It's it's hard work to do this. And I think it's important to understand it's not selfish at all. It's really necessary.
Scott Light:There was a recent CDC study of teenagers, in fact, a first of its kind study of teenagers with autism. And this was one of many findings. 17% of the respondents said that they had suicidal thoughts, and by the way these respondents were in their teens. John, can you talk about that? And and is that number to you? Is that a low number? You think?
Dr. John Ackerman:I do think it's a low number. We know that, in general, when when teens are surveyed in high school about their experience of suicidal thoughts in the previous year, it's actually about 22%, as of 2021, for general teens, and actually rates of suicidal thoughts and behaviors among youth with developmental disabilities, intellectual disabilities, autism have higher rates than then then kids who don't have those conditions. So I think we need to think about why did we get to 17%? We have to know what questions are asked. And we have to understand that a lot of young people do mask these behaviors or feel compelled not to share all of this information. So in our clinical experience, and when we're working in schools or in the communities, we would actually say these rates are higher.
Scott Light:What is the definition of a suicidal thought,
Dr. John Ackerman:there is a definition for suicidal thought. And it's the following. It's a, a, an act taken by an individual with an attempt to end one's life with at least some intent to die. So that may seem surprising when we talk about it. There's either a suicidal thought or there's not. But a lot of people encounter ambivalence, they are not sure whether they want to be alive or not. So if any part of them wants to die, then that is a suicidal thought, any planning consideration? Or thinking about ending one's life as a suicidal thought?
Scott Light:How should parents who are listening to this and they have a child or someone within their home has expressed something or maybe written something in a journal maybe written something in a paper at school? And that parent, this has come to light with that parent? How should they discuss that with that person in their home?
Dr. John Ackerman:So the first thing is I caution folks to look just for those overt signs. It would be easier if more kids wrote in their journal or disclosed suicidal ideation to parents, unfortunately, only about one in four kids will talk about suicide with a parent, even if they're struggling with it, not because they don't have a close relationship, because there's lots of motivating factors not to share that they may not know what's going to happen next, they may be really worried about themselves or feeling like a burden, because a lot of people who are struggling with suicidal thoughts feel like a burden. And they don't want to add that to their family, even though the vast majority of caregivers would not see this disclosure as a burden. So it's just important to note that there's a huge disconnect between what kids share and what is actually experienced. So we need to look for some of the other warning signs like withdrawing more than more than usual, not taking any pleasure in the things that you care about. exploring ways to end one's life changes in sleep diet, and, and those types of things, which we'll probably get to later. And I'm sure Jamie will help us understand even better, why some of these challenges exist in, in identifying these warning signs in youth with autism, for example. But then the other piece of that is what what can parents do? And they can reach out? And they can have discussions with, with the children very directly. They can say, have you had thoughts of ending your life? Have you considered suicide? We want to consider with the young person we're working with, we want to be concrete. We want to be direct. We don't want to use vague terms like have you ever thought about maybe hurting yourself sometime? Or? Or do you ever not want to be here? You want to be concrete? Have you thought about ending your life?
Dr. Jamie Jones:I think what John said was exactly the recommendation that I give parents communicate open the conversation, ask directly and be specific. So the vague language, especially for individuals with autism who have communication difficulties, they have more difficulty with vague questions, because sometimes they don't know what exactly you're asking. So have you thought about this? They might say, Well, yeah, I've thought about it, but that misses the piece of intent. So have you thought about it in a way that you You want to do this is there some part of you that wants to do this being more specific about that can be really helpful. And just engaging with them in any way, there are some individuals who communicate a little differently. So we have some individuals who they might not verbally communicate as much, but maybe they do more drawing. So giving them that opportunity to, to draw to engage in an activity that helps them to communicate these things, and then asking directly, if you can have you thought about ending your life. And it's not going to increase the likelihood that they will, it'll open that door for communication.
Scott Light:How would a parent who maybe has a child who is who doesn't want to share maybe with their parents, and they just don't want to go there, how to parents, again, try to pull out that information a little bit with that direct language that you're talking about, but also use those two valuable tools on the side of their head, those two ears, and to try to get that child to express themselves.
Dr. John Ackerman:You're right that many children don't want to talk about killing themselves, they don't want to have this conversation, they don't want to lean into the discomfort. We know many adults that don't like to have this conversation and lean into it. What we'd recommend, and this builds right off of Jamie statement is we approach the situation, we might have to practice it on our on our own, think about what we can do to make ourselves feel a little bit more comfortable. Understand, from the expert advice, it is okay to have these conversations, you're not going to put the idea into someone's head, it is going to be relieving for someone who's struggling with the guilt and shame of experiencing these internal thoughts and not knowing if it's okay, or they're doing something wrong, you're giving permission. And then you set the table. You can't force the child to eat, but you set the table and you say, I'm here for you. I'm going to be along with this journey. I'm going to ask you this question. And it's okay to it's okay to say yes. That I think is one of the things that are missing from a lot of conversations around suicide, is we leave an easy opening for a person to say no, not really. I'm out of here I'm not answering. So it's, I'm going to be here with you. So don't forget that part, like nothing you say should be like you've done something wrong. And it's strong and brave to say yes, I've had some of these struggles. And if you haven't had some of these struggles, I feel really fortunate and we're in good shape. But it's okay, we can have this conversation, I'm going to I'm going to be here for you, regardless of your answer
Dr. Jamie Jones:being there is key. And like John said, setting the table giving them opportunities, I think a lot of times we're going through our day, so quickly, so fast, we don't stop and allow those opportunities. So making sure that day to day, we do have those times where where a loved one feels comfortable going up and talking to you. Maybe they're not comfortable talking to you now. But if you provide that opportunity throughout the day, throughout the week, then when they do feel comfortable, they'll know that they can go to you,
Dr. John Ackerman:that actually prompted me to think about something else that is usually a good recommendation. And that don't wait until there's a crisis, or you see these glaring warning signs, um, have those conversations when you're, you know, on a relaxed ride home or at the dinner table or a private space, or you're just sitting on the edge of the bed and, and having a couple conversations and ask those questions when things aren't super intense, when there hasn't just been some sort of a meltdown or conflict. It's, you know, let's let's take the time to have this conversation when it makes sense. And the young person's really able to be as emotionally available as they can be.
Scott Light:Is there a website out there or maybe some online tools where a parent or parents can go and and get some of this exact advice? One of
Dr. John Ackerman:the reasons why we started a national workgroup for youth suicide prevention and autism was because there really weren't a lot of strong resources in this space. There are a couple of of national networks that are beginning to do some good work. And with the American Association of Suicidology, we put together some resources around approaching actually individuals of all ages in crisis. So there are some of those recommendations embedded in there. And then yeah, they're just some some of those national networks that that we can think of that have good resources as well. Okay.
Scott Light:I'm gonna get to that national workgroup that you're a part of in just a little bit. Dr. Jones, I want to come back to you again, I mentioned a couple of stats here that we'll use as a baseline or two. Another number that I looked at was this and that was one in 36. And it was One in 36, eight year old children are identified with autism spectrum disorder, which is higher than the previous number. The last estimate, the last big estimate was done five years ago, and 2018. And then it was one in 44. With the numbers and the research that you get here, and boundless, up does that track? And then what do you think is is leading to that number now being one in 36
Dr. Jamie Jones:Does track that number has been slowly decreasing that 44 to 36, we've seen it go down over time. And a lot of that is due to awareness, general awareness where individuals know about autism, doctors know about autism, people are referring more often for a psych testing evaluation. So more people are receiving that diagnosis, because they're more aware of it, because they're seeking out that diagnosis. And they know the benefits of receiving that diagnosis. Dr. Ackerman,
Scott Light:let's come back to that national workgroup that you're a part of on autism and suicide prevention. Give us some clues here as to what's being discussed at the national level, and then permit me to layer on top of that, are there some states or regions that Ohio can learn from in terms of those conversations that you're a part of at the national level.
Dr. John Ackerman:So I think some of the needs that are being expressed at the national level include the need for crisis resources, the need for educated volunteers at these crisis lines, the need for education of law enforcement, education, have providers who may see a general population and don't always have advanced training in certain areas. Certainly, pediatricians could use support a lot of individuals could use really targeted training, resources, and, and really practical skill development in these areas. So I think not only do we have a shortage of providers that we talked about, but we have a shortage of trained providers to deal with developmental challenges and autism and and it is a field that does require specific skill sets. And that's why it's wonderful to have organizations like boundless. And also, at the same time, we need more general providers being savvy and following those guidelines and advice as well.
Scott Light:Let me mention another resource that is just absolutely brimming with with data and perspective. And that is a youth suicide prevention and policy book. And there is a chapter in that with the following title preventing suicide in youth with intellectual neurodevelopmental disorders, lessons learned, and policy recommendations. We could probably talk about this chapter a whole whole lot here. But John, give us the Cliff Notes version, if you can talk about those very things their lessons learned, and maybe some recommendations you'd like to see moving forward.
Dr. John Ackerman:Yeah, so it was fortunate thing i co editor, I got to decide which chapters to focus on. And we also made it open access. So I don't have a conflict of interest. It's free and easily downloadable, which is great. And we identified some partners, including Center for Autism Spectrum Disorders at Nationwide Children's and some of what their take on this was we're engaging in in trying to be better at identifying early risk upstream around around suicide, specifically, we know that we know that not only is autism underrecognized, but suicidal thinking and behaviors in youth with autism is also significantly under identified. So part of the issue is that it's really hard to use some of our standard tools to to really gauge that level of risk. So there needs to be some adaptations. There needs to be more concrete questions being asked and providers who can lean into this question, there also needs to be education of both providers and caregivers. Because believe it or not, not too long ago, individuals felt that individuals with autism or intellectual disabilities were not capable of sort of some of the abstract thinking associated with suicidal thinking and, and what we found out pretty quickly, and I don't know, it seems clear, but you know, it's science takes a while to evolve, that some of the risk factors that put individuals at risk are some of the very risk factors that individuals with autism struggle with the most lack of connection, lack of ability to express oneself to plan ahead to sometimes be inflexible or impulsive, that types of things that we're trying to provide support for are some very significant risk factors for suicide. So as we've come to recognize and push the field to recognize the increased risk, we've needed more training, we've needed more upstream programming. We've needed more prevention strategies to help kids who Through no fault of their own to struggle with these mental health challenges, learn those tools before they go into crisis. So a lot of the chapters about what can we do to intervene early to identify and teach skills that might make a suicide attempt less likely. And to make sure that things like policies and funding, drive change in, in training in making resources accessible, and making sure we're not ignoring this vulnerable population, we do
Dr. Jamie Jones:need not just more supports, but like Johnson more training specific to this. One of the supports that we know that we need more of is the crisis supports. So we, we have, as a nation expanded with 988 crisis phone line, which is a great resource. However, they don't always have the training to work with individuals with developmental disabilities. So at boundless we often have individuals calling our crisis line who have mentioned that they don't like calling 988 Because they, they feel as though 988 doesn't necessarily know how to help them when they're calling. So our crisis phone line has our therapists running it. So we have that experience, we work with individuals with developmental disabilities, so we know how to communicate with them, how to understand what they're going through, and what we can do, if they're having difficulty communicating, what we can recommend, that we know could be helpful for them. So maybe getting them connected to their loved ones, maybe engaging in their preferred activities could be helpful. And we also know what to ask in those situations to try to help them communicate. Now we're trying to expand even further, I know Nationwide Children's has has a crisis online, which is great. They also have mRSS, mobile response stabilization. And so they're able to go out into the community and support in a crisis.
Dr. John Ackerman:If I could add really quickly, I mean, it's so important to have those skilled providers supporting an individual in a crisis, because if you think about it, a person may be calling a crisis line and intersecting with the mental health field for one of the first times their experience is critical to whether they're going to follow up with health care whether they're going to continue to disclose suicidal thinking, if they have an awful experience with someone who doesn't have perspective with their needs, or doesn't pay attention to how they're interpreting what they're saying, and how their their needs are reflected in the moment, they might not access support and the future. And that's really concerning for someone who may have chronic suicidal thinking, or anything like that. So we're really pushing this, because there's a true need. And it is going to reflect on whether whether folks have the chance to get better.
Scott Light:I asked you both at the beginning of the episode, we started with some some short answers on the state of mental health, let's wrap it this way, what gives you hope and encouragement about the state of mental health,
Dr. Jamie Jones:and the community coming together to voice their concerns, push for more support, although we're trying to build that up, and it's not quite there, where we want it, we do have people in the community who are voicing that we need more. And that gives me hope, that it's not just us in the field, that it's it's the whole community coming together to try to push for more.
Dr. John Ackerman:John, I think we're starting to break down some of the silos that used to exist. We're partnering with, with great organizations, we're we're leaning into the idea that some, some people are struggling that we didn't identify before, and we need to invest in that. We're developing resources, not even not fast enough. But we're, we're working hard. There's some great research going on that was absent for for decades that is happening at this point in time. So it is gonna take a while for the workforce issues to catch up and when to you know, really discuss the urgency behind that. But I think what we're doing in terms of learning about the needs and finding strategies to do that, leveraging different technologies, and leveraging the real brilliance of our families and our clinicians to use creative strategies to meet really serious needs is something that is inspiring to me and why I like working in this space.
Scott Light:Well I can't think of two better partners for this episode than boundless and Nationwide Children's so thank you both for being here today. Thank you.
Dr. John Ackerman:Thanks for having us, Scott.
Scott Light:And thanks to our listeners as well don't forget you can be part of episodes to come email us your questions or comments at podcast at I am boundless dot At o RG and again don't forget to give us a review that she had another way we want to hear from you. This is the wellbeing podcast brought to you by boundless