The Mental Health Literacy Guide for Autism
Twenty-nine Autistic adults and family members across Canada were consulted on content, format, and overall design. Ultimately, the guide was based upon the lived experiences of our Autistic advisors and on understanding their priorities.
The Guide was featured in six videos, developed in collaboration with Spectrum Productions
About the Speaker:
Dr Jonathan Weiss, Ph.D, C.Psych. (York University) will present on the process that was used to develop the guide, and on some of the content and resources across different sections. He is a Professor in the Department of Psychology, and a Clinical Psychologist, and his research is focused on mental health in autistic people across the lifespan – their service needs, use, & experiences. His work is also aimed at understanding, promoting resilience & supporting wellness of individuals with developmental disabilities and their families.
We had a chat with Jonathan about the findings and uses of the Autistic Mental Health Literacy Guide and found that this is a vital learning for all service providers looking to support or work with the autistic community.
Watch or Listen to our Talk with Dr. Weiss below:
AutismBC Talks The Mental Health Literacy Guide for Autism with Jonathan Weiss (Part 1 Presentation)
So, welcome everyone. I’d like to welcome all of you on behalf of Brock Sheppard of AutismBC, and myself, Joette Heuft of Square Peg Society. Thank you all for attending, and I will carry on with introducing our speaker today, Dr. Jonathan Weiss. Dr. Weiss is a PhD Associate Professor in the department of psychology at York University, and a clinical psychologist. He is also the York research chair in autism and neurodevelopmental disability mental health. He and his research team are focussed on mental health in autistic people across the lifespan, their service needs and experiences. And, as is evident in the guide, the topic of our conversation today: “The Mental Health Literacy Guide for Autism”. His work is also aimed at understanding, promoting resilience, and supporting the wellness of individuals with developmental disabilities and their families. Today, Dr. Weiss will present on the process that was used to develop the guide, and on some of the content and resources across the different sections of the guide. The guide was featured in six videos developed in collaboration with Spectrum Productions, and Brock will add the links to these videos and the guide itself in the chat – or in the recording. And so, without further ado, I’d like to introduce Dr. Jonathan Weiss.
Thanks Joette. Can you hear me okay on your end? Okay, perfect. So, thank you for the invitation, both to you and to Brock to come and present about the Mental Health Literacy Guide to people here. As you mentioned, this guide is over 200 pages long. And so, I’m not going to go through the whole thing. It’s all publicly available. So, the links will be circulated about all of the specifics, and you can download it and use it as you like. But I do want to use today to highlight a number of key messages, as well as explain the process of how we developed it. Before doing so, I just want to acknowledge I’m in the Toronto area here, which is traditionally the territory of many indigenous nations. The area of Toronto proper has been caretaken by the Anishinabek Nation, the Haudenosaunee Confederacy and the Huron-Wendat, and it’s home to many First Nation, Inuit and Métis communities. And, the current treaty holders, the Mississaugas of the Credit. And I’m sure wherever you’re Zooming in from, you’re on the territory of First Nation, Inuit or Métis peoples.
So, let me jump into the presentation here. I want to acknowledge right off the bat that this was a major process of co-production and collaboration. It wasn’t a situation where any one person wrote the guide. I’ll explain how we went about doing so. But we had many autistic advisors – over 20 autistic advisors, and 8 family members of autistic people participate as advisors over a two-year period to help provide content, inform us about the content and the look, and essentially the structure of the guide and the videos. So, the things I’ll be presenting here are lessons that I’ve learned that people have shared with us through this process. So, huge thanks to everybody who was a part of it. This was, in terms of organizations, was funded by the Public Health Agency of Canada, and the two major organizations that led this work was myself at York University and Dr. Yona Lunsky at the Centre for Addiction and Mental Health.
So, this talk is about mental health literacy, so it’s probably good if we start by talking about, “what do I mean by mental health?” and, “what do I mean by mental health literacy?” While I’m a clinical psychologist and researcher, this isn’t about providing a training for how people should be doing psychotherapy, for example. This isn’t a resource about all of the different ways that therapy can be used or problem solving, and I won’t be speaking about any particular cases or providing advice about any particular cases here, because that’s not really what mental health literacy is about. So, when I’m talking about mental health, I’m really talking about the capacity of each and all of us to think, feel and act in ways that enhance our ability to enjoy our lives in ways that are important to us, and deal with the challenges when we’re faced with — inevitably with challenges. Mental health problems is a part of that conversation as well as living well with our circumstances. So, I’ll explain a bit more. Mental health literacy, though, is the knowledge that we need to be able to maintain that good mental health or address mental health problems when they arise. Mental health overall, depends on the person, but it also depends on their contexts. Where people live, the processes, the systems that are around them, the people that are around them, and how people respond to their contexts and their changing contexts. So, mental health literacy is generally about knowing about four different kind of domains: — How do we prevent mental health problems from happening when we’re faced with challenges, and how can we promote good mental health? — How do we recognize when mental health problems are starting to develop in us, and in others – people we care about? — Mental health problems don’t just turn on or off like a light switch. Typically, there are changes that are occurring. There are challenges that are occurring within us and outside of us, and being able to identify when that happens earlier rather than later – to notice those changes helps us to stay on top of them and to be more in control, and to problem-solve successfully.
But in terms of promotion, it’s not just about monitoring where we’re at in terms of our wellness. It’s also about being able to be active in the kind of self-help and community help strategies that we’re able to leverage. Nobody’s an island, and it’s critical that we develop tools that work for us. So, these are individual tools – things that work for me might not work for you. So, what are the array of tools that we can pick from that are going to work for us to provide self-care — that is the ‘self-help’ — and help others, when we’re starting to both have these challenges or just in general to maintain good mental health?
So, as if it’s not obvious already, there are a number of different aspects of this. It’s about knowledge, but knowledge helps us act differently. Knowledge helps us be more aware of where we’re at and where we want to be. Knowledge can help reduce stigma that’s associated with mental health problems. And hopefully, if we’re able to able to monitor where we’re at and we’re able to have these self-care and community care strategies and we’re engaged with our communities – if we do need help — formal help — from people outside of our immediate context, we’re more able to access that kind of care.
So, this is essentially a general overview of what mental health literacy is in general, but what we wanted to do with this guide is essentially take an autism lens to this – to acknowledge that there are some aspects of general mental health literacy that will be relevant to everybody. But there are other aspects that we need to consider within an autism-informed lens. So, that’s what we’ve done when it comes to the mental health literacy guide for autism, and this process that I’m talking about today.
So, this is part of a larger project: the Autism Mental Health Literacy Project or “AM-HeLP” project, so you can call this the “AM-HeLP” guide. As I mentioned, there were a number of different autistic Canadians who participated as advisors in this as well as caregiver advisors. The links will be circulated both to the actual guide materials and the videos. They are free to access. They are free to share and post elsewhere. So, if there are resources within it that you find useful, it’s not meant to cost anything to get them. There are also lots of links within the guide itself. So, we might not have all the materials. Some aspects of the guide say, “if you’d like to learn more about self-compassion, go to this link,” or, “go to this website.” So, there’s places — it’s a starting point for people’s knowledge; it’s not the end point. So, we really tried to convey and bring together a lot of information about the knowledge – about the factors that can impact autistic mental health and support autistic well-being.
This was meant primarily as a mental health support for autistic people and autism communities. So, not just the autistic person but their family, carers, service providers and educators. But through the process of developing this when we talked with our advisors about who would they like to see have access to this material. Ultimately, people – while everybody had different priorities – people felt that this was important both for autistic people, but also even for the general public. Because as I’ll talk about it in a bit, one of the major aspects of what was highlighted was that a major challenge with mental health – and why autistic people experience mental health problems – is not because of what’s inside them, but because of a lack of awareness, a lack of appreciation, and stigmatizing environments that autistic people are living in. So, the education and the change are things that — the knowledge that needs to be learned isn’t just for that autistic person, but for people that don’t know yet about being able to take an autism point of view; be able to be accepting for people’s differences and create an environment that isn’t ableist – that doesn’t enhance an experience of disability.
This is kind of some of the visuals — I should say also we got great input on things, as much as kind of the layout, to as specific as the font and the font size from our advisors. So, we really try to go through great lengths to ensure that the actual way that it’s read is accessible. Right now, it’s posted in English and the videos are in English, but we are currently getting the written materials translated into French, and I’m hopeful that in the next few months, we’ll be able to post a full mental health literacy guide in French as well. Though I’m not sure — we won’t be able to transfer that over to the videos.
In terms of where our advisors came from — while you know, I’m in Ontario, and a number of our advisors came from Ontario, we actually had advisors — we sought advisors from many parts of the country, and we did receive — we did participate or engage with people in many parts of the country. And I want to acknowledge that people came with considerable intersectionality, right? An autistic person isn’t just an autistic person. They have many different aspects to their identity, and I’m so appreciative that we were able to include that kind of diversity and reflect some of that within the participants that were engaged in this process. Of course, nothing is perfect and that wasn’t even that wasn’t perfect here, but we really wanted to — and I’m glad that we were able to receive a number of different kinds of — it wasn’t a homogenous group. They were people who had many different learning styles, many different identities and aspects to themselves that they can lend to the guide.
So, when did we write this? When did we work on this? It was started in September 2019, and it ended approximately in April. So, we started this pre-COVID, and we ended this during COVID. It was all actually designed to be online from the beginning, so thankfully we didn’t have to shift and do things because we wanted to do things across the country. We started this process by creating many flexible ways that advisors could engage with us. So, some advisors used email, some advisors wanted to primarily work over email or that kind of communication, we had zoom meetings, we had the ability to text in responses or to phone and have individual meetings with the coordinator who was handling this on our end. So, we tried to create many opportunities for people to contribute.
As I mentioned, the input that we received was about the content, the format, even the layout, certainly the design; the images like this came from one of our advisors, and probably most important – and something that we hadn’t planned originally when we were writing this guide, but the advisors really brought up was that the guide is replete with the stories about the lived experience of autistic people – with their realities. I’ll show you an example what that looks like. But throughout, what we did was we would be talking about a particular concept – we’re writing about it – and then that we would be able to embed right away an autistic advisors lived experience related to that content, right? And so, throughout this really shines light. That’s also why it’s a longer guide, because we really wanted to provide a lot of opportunities to embed these first-person stories that were provided.
The way that it happened is we had a general sense of some of the materials, because we’re not the first — we didn’t invent mental health literacy. Mental health literacy guides exist for — this is the first time though — there’s never been one for autistic people before. So, we took those original guides – different ones that existed – and they all have much of the same information. And what we did is we broke those up and we went to our advisors bit by bit, and we said, “This is the table of contents. What do you think of this? What’s missing overall? How should it be organized?” After that, bit by bit we went to the advisors with small sections of the materials that we already had that were not autism-informed, and we asked them, “What do you like about this material that you’re reading now? What don’t you like? What’s missing after you’ve read this? And what would you like to change from this content?” And we did that in a stepwise process – every month we would give them a bit of information — a smaller section, and then give them the opportunity to reflect on their own and give us that information back either through writing, or by having conversations as a group, or by having individual conversations. So, this process was iterative and went through many attempts at refining it both so that the content was correct, but also that we were at a level of language that wasn’t too jargony that made it possible that many people would be able to read this and take away some of the information.
These are the guide sections that you can see here. Again, all of this is on the website that Brock will be sharing, and each one on the website broken up digitally so you can do a drop down and access just that material rather than having to download a 250-page document. So, if you want to know — to see and read just the introduction, you can just access that. If you want to access the part on understanding mental health, you can just access that and so on. Each one — each drop down has a small description of what would be contained in that chapter. So, there are essentially nine major sections here of the guide. It starts off by really defining what we mean by mental health literacy, and the importance of and how we can understand what we mean by mental health. The autistic advisors were quite clear that in addition to that, it was particularly important for the general population — not just for them — they know their autism — but for others to learn about and really understand autism in a healthy way – in a way that doesn’t promote stigma, and that increases awareness and appreciation for neurodevelopmental differences. So, we provided content — there’s a section on understanding autism from that non-ableist lens. After that, we kind of combine the two to understand mental health within the context of autism. This guide — right off the bat, I want to say we don’t regard autism as a mental health problem. Autism is a socio-communicative difference. It is a different way of being. It is a person’s identity, right? And many autistic people experience mental health challenges or have emotional distress of some sort, but that isn’t — and that’s the focus of this guide – on those mental health challenges, on the emotional distress, on the need for well-being and growth and positive mental health and positive emotional experiences. So, we don’t regard autism as a mental health problem, but this is all about understanding mental health within that context. Afterwards, we go through — after that kind of general conceptual pieces we get more specific in our sections to talk about what mental health problems can look like in autism – strategies to promote well-being, mental health supports that — what to look for in formal supports — if somebody needs formal supports, and a section on navigating crises and emergencies.
Well in September 2019 when we started, we didn’t add — we didn’t have pandemics in there. Clearly that became a relevant piece to add in. And then there was a section for family caregivers. Again, all of these sections and where they were ordered were informed by the advisors. This is what they wanted to see in the guide. And then there’s a list of resources that are far from — far from comprehensive, right? But these were resources that, again, were provided by our advisors. I wanted to emphasize that typically, when I talk about — if I were to ask people, “How do you think about mental health?” People typically think about mental health from an individual perspective; my mental health, the mental health of my child, the mental health of my siblings, the mental health of my partner, and so on. But the autistic advisors really wanted to emphasize here that mental health is embedded within a person’s experiences in the world. Experiences that they’ve had before when they were younger – so it’s developmental – and experiences — things that they’re experiencing currently in the moment.
So, if we really talk about mental health problems and we identify problems, we have to acknowledge that there are problems in people’s world – not within themselves – mental health doesn’t just lie between our two ears. So, supports and solutions as well – and this kind of has a running vein throughout the entire guide – supports and solutions — oscillate between supports and solutions for the individual, and supports and solutions for people outside of the individual in their world. The change can’t just be an individual’s level of change. There has to be a relational and a broader contextual change if we really want to address mental health problems – or promote good mental health. Each section of the guide involves — starts with a snapshot, right? And here’s two examples of snapshots that exist. So, right off the bat people can see exactly what they’re about to read about. This section describes – for example, common mental health problems experienced by autistic people. We identify common body, doing and thinking signs of mental health problems. And for autistic people, the combination of stressors and mental health problems can lead to meltdowns, shutdowns and burnout. So, that’s an example. You can imagine that is the snapshot to describe what is coming in the section on mental health problems in autism, right? And this is an important adaptation to enhance people’s ability to learn and to process information. So, part of doing this is to say, ‘We’re not going to force people to read 20 pages and then try to process. We’re going to give them up front very concrete messages about what they’re going to read so that it’s predictable, they know what to expect and they can prepare for that and process that information at a time that’s going to work for them.’
Each section also includes, if needed — if it was felt that it was needed — content warnings because there can be triggers when we’re talking about mental health and stressors and the causes of mental health problems, or what mental health problems look like. And we’re sharing lived experiences, personal stories, individual stories. This can trigger people’s emotional experience in the moment. They could bring back traumas that they’ve had or that they’ve witnessed in others. So, we highlight it right at the start of these kinds of things. So, I want to acknowledge even here that I’m going to be talking about content that can trigger people. If we’re talking about anxiety or depression or suicidality, these are heavy topics. These are topics that bring things up in us, so we have to be aware of that and reflect that – and if people need to turn off or disengage and to say, “That’s enough for today,” we certainly understand that. That’s also part of the use of having a guide that’s written that people can access on their own, because it doesn’t force them to have to sit through an hour-long workshop, for example. If they need to take a step back after 10 minutes because they’ve covered something that brings out a lot of emotions in them, they can do that.
So, this is the example of the part that’s embedded in it that, for me is probably the most powerful aspect – is that we’re able to amplify the voices of the autistic advisors. Nobody had to provide anything. So, what would happen is after a person read a section – if they wanted to share a story, or a snapshot of something that they’re reflecting on after reading that, and they wanted it to be considered — to be included in the guide, they would give that to us. In the end, we clearly had to make editorial choices – I want to acknowledge that we didn’t put everybody’s content in because there was so much information, but we tried to find ones that really reflected one. Here’s an example of when one autistic person shared around their experience of masking. They said, “I feel really worn out and exhausted from masking and being social at work, to the point where I get home and just pass out. I get frustrated because I don’t really work that many hours and yet I’m so tired afterwards. It often means the rest of my night is spent recuperating/sleeping off the workday, and I don’t have the energy to do other things. Or I stay up very late trying to make up for that recuperation. I can get short-tempered, irritable and snap at people or cry easily after a long day – especially if my parents then want to go out for dinner or something. I’m completely burned out, and even just having to process other sounds hurts. And I hate myself for being horrible to others when I get like that; they didn’t do anything really wrong. Sometimes I’m not sure I know how to turn off the masking. I’ve been doing it for so long… I rely on scripts and what I know people want me to say in a social situation. Sometimes I don’t even understand the phrases or sentences I’m saying, I’m just parroting back bits and pieces of what I’ve heard others say in small talk or whatever.”
So, you can imagine — if we just had a definition in there, this is the definition of masking. And then we went on to the next definition; that feels to me a bit cold or quite removed, but having read something like this, I think it really conveys a powerful message of just how impactful masking can be for an autistic person in terms of their mental health – and appreciation for everything that a person has to go through day in and day out just to get by in a non-autistic social world.
So, we need literacy. Not just for the person, but because there’s stigma from others and there’s self-stigma too. People internalize the stigma that they experience around their neurodevelopmental difference and about their mental health differences. That self-stigma – that internalizing of a belief of being less than – it’s what some people talk about as internalized ableism. You know, feeling like you’re different or that you’re less than because you’re different – and then bringing that — that becomes part of who you are and how you see yourself — has a profound negative impact on people’s abilities to handle stressors and also their wellness going forward. So, it’s important that non-autistic people need to learn about how they can act differently when they’re trying to support or they’re involved with people who are different than them, and how society, more broadly, needs to change – including an increased understanding and acceptance; looking to support the rights of autistic people, to be self-determined, and to have lives that are meaningful to them and respecting what autistic people express about their own mental health. So, not everything in this guide for example is something that I would have put in the guide if I were writing this just about myself – some of the advice, some of the — certainly strategies, certainly the language. So, while I still want to acknowledge I had power over that because I was essentially editoring this and bringing it together and translating the language and trying to keep it consistent, there were pieces that weren’t something that I would have brought up – but that was brought up, and that we’ve included.
The other aspect of mental health literacy – and this is really critical – is that — I’m not sure if everybody here is familiar with the notion of the double empathy problem or this challenge that people experience – and that empathy of really being able to take the shoes of somebody else – traditionally, people have said, “Oh, autistic people struggle with empathy – being able to take the shoes and the experiences of somebody else.” But the double empathy problem — or the double empty divide — really says that these challenges go both ways; that while there might be some autistic people that struggle to take on the perspectives of others, people who are not autistic struggle incredibly to take on the perspective of the autistic person. And so, empathy isn’t a one-way street. Empathy is a flow of information that goes back and forth. And part of literacy, or in terms of — if we talk about it as knowledge, is to bridge that gap – is to take on — so, I would encourage people to really read it — not only to look for strategies, but also to read those lived experiences so that it can help foster greater awareness of an ability to put yourself in somebody else’s shoes.
So, when I’m talking about mental health – I’m going to get into some of the key messages now. Not just the structure of it, but some of the key knowledge pieces that were provided to us – or that we’ve kind of brought together. And these are some of the takeaways that I’d like people to have when it comes to their own mental health and the mental health of others; some of the more useful in pieces I would say, if you’re attending this because you’re struggling with supporting somebody or for your own mental health. One aspect is to think about mental health in two related ways – both as mental health involving positive states and mental health involving negative states. And those positive and negative states aren’t mutually exclusive. People can experience positive mental health and negative mental health at the same time. And so, when we look to do things that promotes mental health, it’s not just about reducing symptoms or problems. Sometimes people live with their symptoms and problems, but they can live well doing so.
So, what does this mean? Well, when we think about positive mental health states, we’re talking about positive emotions. You know, being in good spirits, being happy, cheerful, feeling calm or at peace, being generally satisfied with life. So, essential life satisfaction and contentment is an aspect of mental health. It’s not just about a reduction in anxiety. Experiencing psychological well-being – this is the experience of being able to grow as a person, be able to have a sense of purpose and meaning and accept oneself – to not have that self-blame or self-hatred or self-criticism. Beyond the person experiencing well-being socially really means feeling included by others, feeling accepted by society, by our peer groups, by people that matter to us. So, even not talking about anxiety or depression or psychosis or addictions or anything like that which you might think of when we say the word mental health, we’re talking about a dimension of mental health that spends low positive mental health to high positive mental health. So, people might not have much in the way of anxiety or depression, but might have low positive mental health, nonetheless.
Where they’re not experiencing a high degree of life satisfaction or they’re not experiencing a high degree of positive emotions, the ability to experience positive emotions is not just the absence of negative emotions; the experience of positive emotions is adding something positive to our lives. So, somebody with low positive mental health is languishing — is struggling to grow as a person. So, there are a whole host of — we have to ask the question, “What do you need? And what do autistic people need so that they can move along this dimension of positive mental health?” The answer is that we don’t move along this dimension of positive mental health necessarily needing cognitive behavioral therapy or needing medication, for example. How do we move from low to high levels of positive mental health – feeling connected with our communities, feeling like we have a meaningful thing to do with our lives, a meaningful job that values us — I’m feeling that we’re in good physical health — that we’re able to nurture our bodies through what we eat and having good sleep. These are all aspects of mood that move us from low positive mental health to high positive mental health. And it’s not something that you just check off and you’re there once you’ve achieved high positive mental health — “Check, I’m done!” Right? This varies depending on our biology and our psychology and what’s happening socially around us. We can experience varying degrees of positive mental health.
So, I’ll ask you this — maybe we’ll have a conversation after — we’ll have plenty of time for questions and conversation, but what is one thing that you can do today or tomorrow? — Well, it’s a bit earlier where you are, so what’s one thing that you can do today — or one small thing that you can do today, or that you can do for somebody else today that would move yourself or somebody else along this positive dimension of mental health? What’s one small thing? When I mean small thing – I mean really small thing. I posed this question before and I’ve heard examples like, “Well, I can go get a double-double at Timmy’s.” Right? — “I can go for a walk for 10 minutes outside.” — “I can pet my cat.” — That’s what I mean by kind of these small events, but when we put these small events together, we start to move along this dimension and we’re more empowered to do so. So, a key aspect of literacy is being able to identify where we’re at in terms of, ‘how much are we getting in terms of positive mental health?’ — that mental health states and, ‘what are the things we can do to move us along that or keep us in this high or moderate zone?’ Again, some aspects of our mental health are not things that we are doing or that we need to do, but things that have to happen around us. If you’re struggling with employment or unemployed or underemployed, that’s going to impact your ability to feel valued, right? And that’s something that’s not just within you – and there’s no small event that’s going to make that change. So, real pronounced change might require real pronounced policy changes, but within that context, “What are we in control of today?”
There is of course the other aspect of mental health which are the negative mental health states. So, these are the conventional things we think of when we think about diagnoses of mental health problems. Mental health problems really have to do with when the challenges that we’re experiencing cause distress, and that distress outweighs our resources. So, you can think of it as like a teeter-totter or a balance — a scale. And we all deal with stressors, and we all experience moments of distress in our lives. But when those build up, or when they’re so intense that they outweigh our abilities to cope, this puts us more in the realm of mental health problems. Sometimes these problems are chronic – that is, they’re stable within us — they last a long period of time. Sometimes they come and go, right? And they’re there or they’re not. And there’s a difference between a mental health problem and a diagnosis, but we can think about ourselves along this dimension — this negative mental health state dimension of having no distress to having a high level of distress to the point where we’re having mental health problems.
So, you can think of — these are some of the languages or terms that we’ve used to kind of couch this, right? — ‘Are you feeling satisfied or content with not a lot of negative experience inside? Are you feeling annoyed, upset, sad, angry, blue, dejected, pessimistic?’ — You know, it’s very normal to have periods of our life where we feel this way. There’s nothing wrong about feeling this way, but sometimes the intensity of that or it doesn’t go away, and these kinds of experiences put us into this period of mental health problems where we become very sorrowful or mournful or despairing and we lose hope — or we’re demoralized or we’re in full-fledged panic, right? Or our anger is at such a point that it affects our behaviors – and if we act in ways that are maladaptive — that are problematic for us. Sometimes, people exhibit lots of signs, and when those signs — when there’s a certain number of signs, it meets what we call criteria for certain diagnoses. And those diagnoses — those are things that are used by the mental health practitioners, by the health community to say that there are a number of signs that are clustering together and form a pattern. And that pattern has one label that explains that pattern. So, when we say somebody has depression or major depression and it’s a diagnosis, somebody else has seen that there’s a whole cluster of signs that, together meet this label’s criteria. So, lots of people experience periods of feeling depressed, and then there’s the diagnosis of depression. So, diagnoses are this act of applying one label that brings together — that says a person is experiencing many of these signs.
So, we can vary along this dimension just like we can vary along a positive dimension; we can vary along a negative dimension. In fact, there are some people who have high levels of mental health problems, some people who have mental health diagnoses — mental disorder diagnoses – and they also have high positive mental health. I know people who have very fulfilling jobs – who are connected with their family and have friends, but also experience depression and have to work on that aspect of themselves. So, they’re experiencing many — they have many aspects of their life where they would say, “I’m satisfied,” or, “I have well-being, but I also am dealing with panic attacks. I’m also dealing with very high rates of social anxiety or depression,” or so on — or substance use issues. There are other people who might be quite low – they might not meet criteria; they might not have high levels of distress, but they are experiencing languishing or there are people who experience high positive mental health and low negative mental health, right? So, you can imagine there are people in any quadrant, so to speak here. And you can ask yourself: where are you? How would you rank yourself on these two dimensions? Maybe the solution is that we need to ask questions like, “What are the things that we need to do to move us in terms of the positive dimension and to move us in terms of the negative dimension?” Other people really need to focus on the negative side and others on the positive side.
Ideally, you’re experiencing low negative mental health states and high positive mental health states. But again, this isn’t an all or nothing – and because of what’s happening within us and outside of us, this can vary. And part of what we try to explain in the guide is that a certain degree of acceptance and grace is really important here.
In terms of — I mentioned before a key message here is that mental health is not just within us — one of the biggest messages that came out from this that isn’t in traditional mental health literacy materials is that growing up autistic in a non-autistic society has a big part to play in a person’s mental health challenges. A big part. The social piece.
When we talked and we got input on, ‘what are the aspects of the social piece that impact people’s well-being?’ — Here are a whole host of different examples that were provided to us — that the advisors provided: Things like victimization. Bullying, for example. Isolation or rejection. Have I already mentioned masking? Hiding who they are or having to exert effort to blend in?
Inappropriate environments or struggling to access social connections. Lateral hostility – so hostility that people experience from within the autistic community — from other autistic people. This is an important community for them, but it doesn’t mean everybody gets along or everybody kind of — that there’s no points of tension or hostility – so, within a community. And the list can go on and on, but social aspects have a huge part to play in a person’s mental health. But in addition to that, we have to be aware of our own psychology. What’s our temperament like? How do we see ourselves? What’s our view of the world? Do we have a very pessimistic view or an optimistic view of the world? What are our planning abilities like – or our abilities to learn through written material or through listening to somebody else? Our abilities to pay attention and to memorize things? These are all aspects of our psychology that matter in terms of managing stressors – and biology is important too. We all have different genetic makeups – and some of those genetic makeups can impact our mental health. There is a hereditary aspect to many mental health problems. And so, we can — and there’s aspects that aren’t even hereditary but that are still part of our genetic makeup – and our biology, more generally. The health of our gut, the health of our physical systems, our physical health more generally; our neural chemistry, the structures of our brains and so on. So, all of these pieces are important to recognize. Some of them are more changeable than others, but they can all play a role in terms of our mental health.
In terms of — I want to also acknowledge that I’m not kind of monitoring the chat right now, but that afterwards, when I wrap up on the talk part, we’ll be able to reflect on some of the things in the chat or have questions. In terms of — so, everything we’ve talked about so far is quite general. But then there is a section in the guide that talks about what mental health problems typically look like. So, we’re talking about things like eating problems, obsessive compulsive disorder, trauma, both short- and long-term anxiety disorders and so on. So, things that would be diagnostic, so to speak. But also, things like meltdowns, shutdowns, and autistic burnout that aren’t part of traditional mental health problem categories.
Ultimately, we talk about each of these labels — like depression, — by saying, “What are the typical signs in terms of how a person feels? How a person behaves? How a person thinks — and within their body?” So, this way we try to outline a number of the different things to look out for and to be aware of – and where possible, we try to show or acknowledge how it might be different for an autistic person — I’ll get into that in a bit. Ultimately, I’ll say — actually here, the most important message around looking out for mental health problems is to know your own usual on a typical day – not what would be expected from somebody else. So, if somebody is autistic — we need to know what is their ‘usual’ like – not their usual under tremendous amounts of stress and strain and violence or oppression – but what would their ‘usual’ be like when things are going okay for them? Once we know what their ‘usual’ is like, we can then identify, ‘what are the changes that are happening for this person?’ — from their ‘usual’ in terms of how they feel, how they behave and how they think. I’ve worked with people before — I worked with a young man for example who – part of his ‘usual’ whenever he would see me, was to go around his rooms and open and close his windows in a certain pattern. There is nothing — that’s not a mental health problem – that’s his autism. That’s him being — he’s autistic. And that’s how he essentially responded to me coming into the room. I knew that. I didn’t pathologize that. I accepted that for who he is – that’s just his ‘usual’. And in fact, if he stopped doing that when I came into the room – if he just sat on the couch instead of getting up and opening and closing all the windows — while that might look more neurotypical, to me that would signify that potentially there’s a change here that I have to be concerned about. Because he’s not his autistic self. So, knowing who you are and knowing what is ‘usual’ those are signs that — not just in the seeing others, but if we know what our ‘typical’ is for ourselves, then we’re more aware of when there are small changes that are happening in us, and it could be the early warning signs — the early signs to say, “Oh, I need to up my positive mental health states. What are the small changes that I have to be aware of outside of myself or in terms of my physical health?” So, this is a key, and we talk about that a lot in the guide – understanding your own ‘usual’. If people don’t know, in terms of — there were three kinds of aspects of this that our advisors wanted us to ensure where it was in the guide — that is, recognizing autistic meltdowns, autistic shutdowns and autistic burnout – ‘autistic meltdowns’ being the bursts of overwhelming emotion that can be hard to control because of things that are happening around us – ‘shutdowns’ was kind of described as ‘silent meltdowns’. So, zoning out, being less aware of a person in an environment — kind of withdrawing inwards, but for the same reasons as the meltdowns. For example, if there’s unstable or insufficient housing, or a person might need to leave because of stimulation, right? They might not have this overt kind of meltdowns, but they might have these kinds of shutdowns. They might withdraw.
‘Burnout’ being shutting down the mind or body after a long period of stress and being overwhelmed. So, this can be pronounced – like, this can last for a long period of time — this kind of burnout if somebody hits that point, right? Because they’re just completely depleted, and it might look like other mental health problems like depression, or catatonia, or — there could be lots of labels for it, but it’s important for mental health providers to know that sometimes an autistic person is presenting with autistic burnout because they’re just exhausted. And we want to then ask the question, “What do we need to do to increase their stores of energy? What’s needed here in that way?”
So, that gives you an example of some of the focus on mental health problems. In terms of strategies to promote well-being: there’s a whole host of short and long-term strategies that are highlighted in the guide. So, I’m not going to go through each one of these, but I do want to give you examples of what they might look like. Certainly, in terms of short-term strategies for well-being, we talk about the kind of five domains – spiritual well-being, psychological well-being, emotional well-being, physical well-being and social well-being. So, in each one of these domains we can gauge where we’re at – ‘How would you rate your well-being in that domain in terms of it being important to you, too? And is there anything you’d want to do differently — or want to occur outside of you differently to increase that wellness — that positive state?’ — So, it’s impacted by many of these individual and contextual factors. We try to define self-care and community care as two major domains to focus on. Self-care means making it a priority to do things that a person loves to do that helps them feel better – something that the person loves to do, not somebody else tells them to do, but isn’t important to them. Community care involves taking care of the needs of others. Sometimes the most important aspects of promoting well-being are the steps that we take to support others or be connected to others in our communities. So, both of these are integral. Self-care planning and community care planning means building physical and emotional strategies into daily living that help deal with life challenges. What’s one self-care activity — one micro — one short quick self-care strategy that you can do today that you’re not yet doing? Then you don’t have to wait for mental health problems to engage in self-care. Self-care strategies are things that can be used all the time.
Examples of this include — for example, being aware of what we call ‘strength spotting’. If you were to put a list of all of your strengths down on paper, what are your strengths? Are you compassionate? Sensitive? Intelligent? Outgoing? Strong? Funny? The list goes on and on. Moral? Just? Considerate? What are your strengths, right? Both in terms of your thinking, in terms of your emotions, in terms of your body and so on. Or describing — finding role models – people you can look up to — that you do look up to and identifying why you look up to them. What is it about them that you value? What’s important to them that you see in them? — Being able to picture that and hold on to that in your mind. Other examples or things like having a standard self kind of care — self-care kind of questions that you can ask yourself — that just pause in the moment to create a bit more awareness in how you’re doing. So, an acronym is called — that’s in there is called ‘HALT’. Check in about your hunger, about whether your level of frustration and anger, your level of loneliness — or being disconnected, and your fatigue — your tiredness – ‘HALT’. How am I doing right now in each of those domains? — “Okay I’m doing pretty good,” or, “You know what? I am kind of hungry right now. I haven’t eaten all day.” Sometimes just having this kind of reminder to check in — “I have this percolating low level of frustration because I keep having to be an environment where the lights are way too bright for me.” Right? “These damn fluorescent lights,” or, “People are talking so loudly, and I’m not allowed – I’m not able to use my headphones to block things out,” or, “I have to put headphones on yet again and I don’t want to have to – “ Right? When we’re aware of these things before they become major issues, it helps us to stay more in control of them and problem solve. Self-compassion is a huge aspect of short-term strategies and there’s – I would encourage you to go to this link, and there’s — within the guide, more talking about self-compassion and kindness for ourselves and the importance of that especially if we grow up in an ableist place and we internalize that stigma – and figuring out positive statements that we can say to ourselves. I’ll share something with you here. It’s not just things that we say to ourselves – I have on my phone a reminder that pops up every morning – every morning at 6:00am — whether I’m awake or not, it pops up and I eventually see it when I look at my phone that says, “Take a deep breath and remind yourself that you’re good enough.” That’s something that at one point I had a moment of clarity for myself, and I thought that, and it just gave me a sense of — an important reminder, because sometimes I get swept up in the ‘What do I have to do’ situations. That’s not — the advice isn’t that you need that same reminder on your phone, or that you should use a reminder on your phone at all, but what are these small positive things that connect with you — that are important to you – or to others. There are also longer-term strategies, and here’s a whole bunch of longer examples of longer-term ones that are discussed in the guide. So, I won’t go through all of these here, but it just gives you a flavor of it. It’s not about doing all of these things. You can think of mental health literacy as knowing what many options there are out there and finding the ones that work for you – and then being able to pick them. There’s probably many aspects of what’s in the guide right now that you already know to be true. It’s not that it’s going to all be new, but maybe there are a few pieces that you hadn’t learned about yet – or that other people need to learn about that they haven’t yet.
In terms of formal supports, the guide talks about things that autistic people are advising — that other autistic people look out for if they’re engaging with formal supports. Does the formal support — that is, I’m talking about like a health professional or an educator or a counselor – do they ask for consent? Do they really listen to the person? Are they open-minded and willing to learn – and not just there to teach but also to learn? Are they accepting of autistic traits? Or are they trying to change that person from — to be less autistic somehow — and identifying the autism as the problem? Does the formal support have ways of adapting how they’re communicating – to tailor how they communicate to work with the autistic person, right? Sometimes, for example: maybe face-to-face in-person communication isn’t the best way to communicate and being able to do it over text or over telephone or through a combination of video conference and email — maybe there’s a different way of actually sharing information – providing written information to help support that communication. And that goes both ways. Are the formal supports — do they convey honesty? And are they patient? And do they have good boundaries between themselves? These are just examples of a lot of the pieces that are kind of things to watch out for. In terms of the types of supports for mental — formal supports for mental health problems that are in the guide, there’s information about different aspects of education around psychological wellness, different kinds of psychotherapy that exists, a bit on different major aspects of medication — it’s certainly not a psychopharmacology guide. It doesn’t prescribe medications. It doesn’t say, “if you have this, then you should take this medication.” It doesn’t get that specific. This is really for everybody. Not for a psychiatrist, for example. And more generally, other psychosocial supports that might be formal but don’t fall into these kinds of categories. So hopefully that gives you here a window into what’s in the guide, and some of that already resonates with you. Here’s just a snapshot of what the six videos that Joette mentioned — and that Brock is going to circulate — what they look like. So again – so, this was made by Spectrum Productions – they produced it. And the look of the videos was very much informed by advisors who wanted to ensure a particular adult-oriented look – one that reflected difference and diversity, and the content of the videos was taken from the guide. So, we literally pulled main aspects word-for-word from the guide and also had autistic advisors provide quotes — and actually they were interviewed for the videos to embed. So, it’s just another way of sharing some of that key information. I’ve embedded a clip here and I’ll play it for you now. So, these are again able to be shared and people might find them useful. So, here’s one — so I’ll play this here for us.
This video series was produced from the Autism Mental Health Literacy Guide by the Autism Mental Health Literacy Project (AM-HeLP Group). This video is one of six in the series about different aspects of autism mental health literacy. For this video, we will talk about understanding mental health literacy. Mental health literacy means finding and applying information about mental health in real-world situations.
“Why is this important to you?” — Understanding your own mental health can help you experience well-being, manage stresses, and find help when it is needed. Let’s explore what we mean when we say mental health literacy.
Mental health knowledge: understanding the different ways people can feel and interact with the world. When is someone feeling bad and why? When is someone feeling good and why? There are many things we can learn to understand positive and negative mental health states. Reducing stigma: reducing stigma means not judging others or thinking less of them when they experience mental health difficulties. They deserve respect, support, and acceptance just like everybody else. Improving attitudes, knowledge, and beliefs. Being open to talking about mental health with others. Learning about different ways that we can support our own mental health and that of others. Seeking help in the right place and time. Knowing when to get help. For example, when you are in a crisis. Knowing where and how to get help. Where can you find a peer, a counselor, or a specialist to talk to? Knowing what good care looks like. Are the people helping you doing a good job?
Now, let’s take a look at mental health literacy with an autistic lens. What is especially important to the autistic community when it comes to mental health literacy? Here are five topics important to autistic mental health. Being heard: autistic people often report not being consulted or listened to when it comes to their own lived experiences. Mental health difficulties can arise if you feel like your voice is not being heard. Making sure autistic voices are heard leads to greater understanding and acceptance of autism in society. It also helps improve autistic mental health.
Getting help from service providers: as an autistic person looking for help, you may be trying to explain what you need but feeling like your service provider is not getting it. Healthcare providers often lack the training to understand the different ways in which autistic people can communicate about their mental health needs and experiences. Mental health literacy teaches health care providers to listen to you and help you get the supports you need. Getting access to resources: everyone deserves support, and it can be hard to access when you need it most. This is particularly true if there are few autistic-friendly resources or if you don’t know where to go to access them. Mental health literacy means learning about how to access the right kinds of support at the right time.
Okay so, I think I’ll stop there just for the sake of time. That gives you a flavour of what the videos kind of look like and some of the content and the tone. There’s also the transcripts of the videos — I believe that are available too for people where processing, watching and listening is hard, and they want to read that at the same time. So, we’re really kind of running to the end of things – I’m not going to go through this in detail. I just want to explain that in addition to developing the guide, I’m a researcher and it’s important that I work to learn about what we did right and what we could do better in terms of the process of engaging in co-production with autistic people. Because there’s a lot of things that we can learn for the future, so one of the things that we’re doing now — is we are — we’ve interviewed our advisors to get a sense of what it was like for them to go through this process, and we’re analyzing what they’ve told us to be able to develop some lessons learned for the future to do things better. So, I’m not going to go through all of these in quotes — and Joette — and Brock I can send you an updated slide that kind of doesn’t have some of the info I’m going to skip over. But you can see some of the themes that really came out from our autistic advisors. Things like — things they liked and also didn’t like about the process, or things that — they’re just experiences. You know, feeling validated, supported — felt like the process was rewarding, or you know on the other end of things that, participating in this had a lot of — required a lot of labor on their part. Both emotional labor in terms of having to review a very heavy content and wanting to, but still providing stories and information that is exhausting or triggering for them. But also, emotional labor in terms of having to interact in a particular way having emotional costs for them. We had monthly meetings on Zoom, and sometimes those monthly meetings — and even outside, autistic advisors will connect with each other and sometimes people can bring up content that is triggering – where there could be disagreements. These kinds of interpersonal dynamics that aren’t related to the written word in terms of the guide, but still take a lot out of a person. They also spoke about the importance of compensation, and they value the fact that we paid them for their time as consultants in this process of — as independent consultants. And that for a number of advisors — they valued that compensation. So, there’s a lot of themes that we’re still distilling. This is just preliminary. I think what I’ll leave you with is: as a final message, “Your mental health, and the mental health of people around you is critical.” And it’s — mental health literacy is the knowledge for the person and for their broader contexts. It means knowing what you need and what other people need to promote good mental health. It’s about being able to access helpful informal supports and formal supports in a timely way – and in a way that works for you. And it’s about knowing what society — and identifying what society needs to know, and what the society needs to do to promote autistic mental health. So, with that I think I — again, you have the links — you’ll get the links to the actual materials, and I encourage you to browse them – and if you like them, share them with others. And I’ll stop sharing my screen. And we’ll be able to kind of have a conversation and some questions.
AutismBC Talks The Mental Health Literacy Guide for Autism with Jonathan Weiss
The Mental Health Literacy Guide for Autism is meant for Autistic Adults, family members, professionals, policy-makers & leaders. The goal of the guide is to provide knowledge about the factors that can impact Autistic mental health. It highlights how context & individual experiences play roles one’s mental health, and how societal acceptance and appreciation of autism is critical for the better support and well-being of Autistic adults. Twenty-nine Autistic adults and family members across Canada were consulted on content, format, and overall design. Ultimately, the guide was based upon the lived experiences of our Autistic advisors and on understanding their priorities.
Autism and Diversity
Autism and Diversity We discuss how diverse autism is. This video is 1 of 6 in the animated video series produced from the Mental Health Literacy Guide for Autism by the AM-HeLP Group. Videos were produced by: Spectrum Productions (https://www.youtube.com/c/Productions...) Voiceovers by: Riley Goldsmith (https://www.youtube.com/c/RileyLastna...) and members of the AM-HeLP Group Scripts Written by: Paula Tablon Modica, Dr. Yona Lunsky, and Dr. Jonathan Weiss This project was a collaboration between York University and Centre for Mental Health and Addiction, and was supported by the Public Health Agency of Canada.
Understanding Autistic Mental Health
Understanding Autistic Mental Health We discuss the social, psychological and biological factors that play important roles in Autistic mental health. This video is 1 of 6 in the animated video series produced from the Mental Health Literacy Guide for Autism by the AM-HeLP Group. Videos were produced by: Spectrum Productions (https://www.youtube.com/c/Productions...) Voiceovers by: Riley Goldsmith (https://www.youtube.com/c/RileyLastna...) and members of the AM-HeLP Group Scripts Written by: Paula Tablon Modica, Dr. Yona Lunsky, and Dr. Jonathan Weiss This project was a collaboration between York University and Centre for Mental Health and Addiction, and was supported by the Public Health Agency of Canada.
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