A Conversation About Autistic Burnout with Neurodivergent Support Specialist Kristy Forbes
I’m honored to kick off the season with a powerful conversation about autistic burnout with autism and neurodiversity support specialist, Kristy Forbes. I know that autistic burnout looks and feels different from the kind of burnout experienced by neurotypical people, so I wanted to explore this topic with someone who has a deep understanding of and experience with autistic burnout, both as the parent of autistic children, and as an autistic person herself.
My hunch is that many of you are familiar with Kristy Forbes’ incredible work in the neurodiversity space through her resource InTune Pathways. Kristy’s work is informed by her extensive professional experience as an educator, as an integration aide to children with social, emotional and behavioral differences, and as a childhood behavioral and family support specialist. Her most valuable insights, however, come from lived experience. Kristy is formally identified autistic, attention deficit hyperactivity disorder (ADHD) and Pathological Demand Avoidance (PDA) as well as being a parent to four neurodivergent children.
For today’s episode, Kristy and I talk about what exactly autistic burnout is and how it presents, why “deep rest” is critical for someone experiencing autistic burnout, and how autistic burnout is differentiated from mood disorders or depression. We also talk frankly about the challenges of seeing burnout in autistic children through a neuronormative lens, and how that may lead to therapies and strategies that may be the opposite of what a child in autistic burnout actually needs.
This is a rich, compassionate conversation and truly a salve for parents who are struggling with their child’s burnout and are feeling overwhelmed and unseen. I hope you find this comforting and empowering.
About Kristy Forbes
Kristy Forbes is an Australian-based autism & neurodiversity support specialist with experience working with clients both nationally and internationally. This includes neurodivergent people and their families; and professionals who wish to support them, such as educators, psychologists, pediatricians, allied health professionals, support workers and integration aides.
Her work is informed by her extensive professional experience as an educator (Early Childhood, Primary and Secondary teaching), as an integration aide to children with social, emotional and behavioral differences, and as a childhood behavioral and family support specialist. Kristy has degrees in Political Science, Education, Literature, Film and Art. Her most valuable insights, however, come from lived experience.
Kristy is formally identified autistic, attention deficit hyperactivity disorder (ADHD) and Pathological Demand Avoidance (PDA) as well as being a parent to four neurodivergent children, all with varying neurodivergent experience and expression including being non speaking, apraxia, dyspraxia, tourettes and PDA. She has the unique experience and insight of many perspectives: the teacher, the support specialist, the parent, the partner and the neurodivergent person (including the child she once was!).
Kristy is passionate about radical acceptance, and the profound need for a paradigm shift that moves us as a society from a perspective of autism as a medical disorder to an identity and a culture that is interwoven with pride, inherent and organic autistic expression and intersectionality with our sibling communities such as the LGBTQIA+ community and many others.
After beginning her own journey as a parent to autistic children, seeking to cure and change autism, she has emerged from the doom and gloom narrative of neurodivergence and into the light of positive autistic identity and family life. Her passion is to support families raising autistic children to thrive. No matter where they’ve been, no matter the trauma or crisis they find themselves in.
Things you’ll learn from this episode
- What autistic burnout is and how it’s different from other types of burnout
- How mental health challenges might be misinterpreted in autistic burnout treatment
- How to support young people, adolescents, and children in recognizing the value of taking pause and resting
- Clues that can help parents have a better understanding of what their child is struggling with
- Examples of what deep rest might look like for autistic children and young people
- How to recognize when your child is starting to emerge from burnout
Resources mentioned for Autistic Burnout
- A Conversation with Neurodiversity & Support Specialist Kristy Forbes (Tilt Parenting Podcast)
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Debbie Reber 00:00
This season of Tilt Parenting is being brought to you by the Differently Wired Club. If you’re looking to dive deeper with me and get live personal coaching, support, be part of an incredible parent community and focus on creating significant change in your parenting world. Check out my Differently Wired Club program. Doors open for a few days at the end of every month, Learn more at tiltparenting.com/club.
Kristy Forbes 00:24
And then I hear parents who don’t have that information using words like regression, my child regressed, they were doing so well socially. They were doing so well academically and then they regressed. And the first thing I think when I hear that is they burnt out.
Debbie Reber 00:46
Welcome to Tilt Parenting, a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I’m your host Debbie Reber and welcome to the winter season of 2023. I am so happy to be back in the podcast chair and to be able to share with you the interviews I’ve been working so hard on over the past few months. And I am really honored to kick off the season with a powerful conversation about autistic burnout with autism and neurodiversity Support Specialist Kristy Forbes. I know that autistic burnout looks and feels different from the kind of burnout experienced by neurotypical people and so I wanted to explore this topic with someone who has a deep understanding of an experience with autistic burnout, both as the parent of autistic children and as an autistic person herself. And my hunch is many of you are already familiar with Kristy Forbes incredible work in the neurodiversity space through her resource Intune pathways. Kristy’s work is informed by her extensive professional experience as an educator as an integration aid to children with social, emotional and behavioral differences and as a childhood behavioral and Family Support Specialist. Her most valuable insights, however, come from lived experience. Kristy is formally identified autistic Attention Deficit Hyperactivity Disorder and pathological demand avoidance, as well as being a parent to four neurodivergent children.
Debbie Reber 02:18
So for today’s episode, Kristy and I talked about what exactly autistic burnout is and how it presents, why deep rest is critical for someone experiencing autistic burnout, and how autistic burnout is differentiated from mood disorders or depression. We also talk frankly, about the challenges of seeing burnout in autistic children through a neuro normative lens and how that may lead to strategies and therapies that might just be the opposite of what a child in autistic burnout actually needs. This is such a rich, compassionate conversation truly a salve for parents who are struggling with their child’s burnout, and are feeling overwhelmed and unseen. I hope you find this comforting and empowering. And just so you know, this is the second time Kristy has been on the show. If you haven’t listened to our first conversation where we talked about PDA and more, you can check that out by going to tilt parenting.com/session 182.
Debbie Reber 03:19
Before I get to our conversation, I have an interesting and exciting update to share with you. There’s a new way to engage with me and the podcast this season. I absolutely love doing this show and getting to have thoughtful conversations with fascinating guests like Kristy. Every single episode sparks me in unexpected ways. And I always find myself wanting to go deeper into the topics with other people who are as interested as I am. And now we can. I am partnering with a new social platform for book and podcast clubs called Fable to host a special Tilt Parenting Pod Club. What’s a pod club? It’s like a book club, but for podcasts. So together, we can go deeper on every single episode and share highlights, comments, questions, related resources and really just talk about whatever we want to talk about. It’s also completely free. So it’s starting this week with today’s conversation with Kristy Forbes. So to join my new Tilt Parenting Pod Club, just download the Fable app on your phone or device and search for Tilt Parenting or you can go to tiltparenting.com/fable for a direct link to our Pod Club. I hope to see you there. Okay, and now here is my conversation with Christy Forbes on autistic burnout.
Debbie Reber 04:45
Hey, Kristy, welcome back to the podcast.
Kristy Forbes 04:47
Thank you so much for having me. I’m so excited to be back.
Debbie Reber 04:51
It has been a couple of years and actually, it’s been over three years since you were on the show. And I went back and looked at that episode and it’s been downloaded about 30,000 times. So it’s pretty high up there in terms of my more popular episodes. And that didn’t surprise me when I looked because your work has just kind of exploded and the time since we last talked, I’d love if you could even just give us a little update what has been happening in your world with In Tune Pathways and the work that you’re doing with parents.
Kristy Forbes 05:24
That’s amazing. It’s amazing. But also, I’m not surprised because I know that there’s such a need for families to be validated in their experience as well. And I think when we last spoke, I had just started out and I was coming from a space of wanting to share my story as both a parent and a neurodivergent adult. Since then, I have been in community with our hundreds and hundreds of families. I’ve engaged in private consultation, I offer more programs and services now. But I also became incorporated and started a company. I employ 13 autistic parents of autistic children. We work as a team mentoring other families in a variety of ways. And yes, so much has happened. But yeah, it’s an honor to do the work.
Debbie Reber 06:29
That’s incredible, first of all, 13 employees and doing this work. And, again, I know so many families in the tillage community turn to you, especially if they have kids who have a PDA profile. And I’m always like, talk to Kristy, go to Kristy, you are such a leader. And I just want to acknowledge the way that you show up is so inspiring. I’m not autistic, I read a lot of your posts on Facebook, and the way that you hold space for your community and speak your truth is so inspirational, I see the way people respond to the rules and the boundaries that you set in your community, and just how proud you are to be who you are. The impact is really huge. And I’m sure that you feel that. But I just want to acknowledge that I think it’s really incredible work you’re doing.
Kristy Forbes 07:20
Thank you so much. That’s really hard for me to hear that sorry. Yeah. So okay. No, it helps me. And I can sit with that discomfort because I lean into the intention. And I really appreciate that. That means a lot. Thank you.
Debbie Reber 07:39
You’re so welcome. The reason I wanted to bring you back on the show is because I wanted to go deeper into this idea of autistic burnout, which I know a lot of families deal with. And I think it’s something again, that there’s not a lot of awareness of, at least here in the US. I know a lot of therapists or people who work with autistic adults, and children may not recognize it or even know what it is. So I’d love to just explore that with you today. It’s so important. It’s so important. And I can only imagine there are so many people are burned out generally because of the world we’re living in right now. But it’s a completely different experience for an autistic person. And I wonder if that would be just a good place to start. I don’t know if it’s like a definition. But how would you describe what autistic burnout is and how it’s different from other types of burnout.
Kristy Forbes 08:33
I was laying in bed last night thinking about this, thinking about how for autistic people, there is a cost to everything that we do. There is an emotional, physical, spiritual cost. And that comes along with things that we enjoy as well. And it’s so hard because I was reflecting on my own experience of growing up on identified autistic and how I was so fatigued, especially in my teenage years. So incredibly fatigued consistently. And, of course, when that happens for young people, the predominant approach is to encourage us to show up and to overcome and to engage in self care in a neuro normative way. For me, nobody was to blame around that because we didn’t know what we knew what we know now but burnout for me, I think people think that it’s just being fatigued and tired. It is the complete beginning of shutdown of my sensory channels. So my personal experience is that my hearing my auditory processing is the first thing that I noticed that is impacted and there will either be Not a ringing but a swishing sound in my ears, it will sound as though I’m underwater, my brain will completely scatter. So I can’t pin down thoughts. I can’t retain information. It’s like ADHD on overdrive. It is so incredibly debilitating. Along with that there’s the fatigue, there’s aching joints. And then there’s the overlap for neurodivergent people, whether they’re autistic or ADHD, or any other form of neuro divergence, when we are in burnout, particularly if it’s prolonged, then we run the risk of developing chronic illnesses that are co occurring conditions for autistic people. And we see things like fibromyalgia, chronic fatigue syndrome, it was my experience as a teenager to have glandular fever, which can develop into chronic fatigue, and it can go undetected for a really long time. And it’s very common for autistic people. So sometimes what will happen is, illnesses will be picked up. And we won’t realize that along with that is burnout. So we might treat the illness, but still be completely burnt out. Because the only treatment for burnout is rest, deep rest. So it’s quite insidious in the way that it can be overlapping with other things and, and misunderstood, but yeah, my experience isn’t just fatigue or tiredness, it is complete sensory shutdown,
Debbie Reber 11:41
As you were talking about what it might look like, I was wondering, we know that so many young people now, we’re reading more and more about depression and anxiety. And so can it look like that? And we might then, okay, we need to go to the therapist, and we need to work on activating your well being by doing more of this. And can you talk about that mental health piece and how that might be misinterpreted.
Kristy Forbes 12:10
So this is exactly what I was referring to before. I’ve had my own children in that situation, particularly going through puberty. So puberty for autistic people, is such an incredibly challenging time with those chemical shifts in our brain and also in adulthood, particularly for autistic women, perimenopause and going through menopause can increase our anxiety and our burnout levels. And so when our young people, and not just teenagers, primary age children as well, what happens is, even when we’ve been identified autistic, there is this neuro normative approach around how to treat burnout. Because it’s so misunderstood. And some of those approaches will be things like, you need to be more immersed in community, you need to be around people more, you need to engage with your interests more, you need to do things that connect you to other people more. And if I can be completely honest, that is the last thing someone in burnout needs. Because autistic people require so much downtime, and so much rest and so much solitude during those periods. That being with others, being engaged in conversation, engaging our cognitive brain to be thinking about tasks, and executive functioning and communication. That’s the stuff that contributes to burnout. Because we’re so limited in our capacity to engage those parts of our brain. So when we’re encouraged to engage those parts of our brain, when that’s the very thing that puts us into burnout, it’s prolonged for years. And then I hear parents who don’t have that information using words like regression, my child regressed, they were doing so well, socially. They were doing so well academically, and then they regressed. And the first thing I think when I hear that is they burnt out.
Debbie Reber 14:30
That is such a reframe, just even to think about the seasons that so many families experience of these regressive cycles. And they can almost become predictable, depending on what’s happening or what time of year it is and what’s happening in school. So that is a really interesting reframe and makes so much sense.
Kristy Forbes 14:50
Yeah, and on top of that, we have autistic folks who are sensitive to seasonal changes which can bring on seasonal depression or anxiety and then There’s the fact that we have this hypersensitive neuroception. So that threat response is more prone to consolidating memories that are negative than positive. So our limbic system is working in cohesion with that memory consolidation of negative experiences. So it gets harder to come out of burnout. When our threat response is processing, all of these things that have happened, that can be potentially traumatic. So when I’m in burnout, I do become depressed. Because when you are incapacitated, that’s depressing. And so what happens is when you find yourself in that state of being limited, and not having any options, other than to move into deep rest, if you’re a person like me, if you have a PDA profile of autism, and you are extremely determined, and yet your body and brain says no, no, no, that right there can push a person into depression very, very quickly, because you’re being held hostage to this neurobiology.
Debbie Reber 16:17
Yeah. So as you’re sharing that I’m thinking of young people, maybe teenagers who their social life is important to them, or they’re putting energy into taking a certain level of classes or you know, so they feel kind of hostage, perhaps, and frustrated that they can’t do the things they want to do or engage in the things they want to engage in. And so many of them, my hunch would be to push ahead. But how do we support young people, adolescents, teenagers, or even children to recognize the value of taking that pause and that rest,
Kristy Forbes 16:53
I think it’s more about the adults around them. And the way that we’re informed as a society, this moves into a whole other topic around accessible health care for autistic people. Because again, there’s that predominant messaging around overcoming and accessing forms of care that may not be appropriate for neurodivergent people. What pushes us further into burnout is the panic, and the anxiety around being misunderstood, missing out, not being a part of things when we truly want to. And sometimes our peers won’t understand that. And when you’re a young person, and you’re going through that experience, you are more likely to not understand that experience, either. So we turn against ourselves, then we start self loathing and self rejecting. And it just feeds this process. On top of that, we often sense the desperation in our families who are struggling as well, who want desperately to help us, but are also encouraged and at times pressured, blamed and shamed around how to push us through. So the element of needing that deep rest, most of the time isn’t even recognized or touched on as an option, because it’s not something that society encourages or values anyway, I mean, at the risk of getting political. We are a capitalist society and functionality and productivity is really valued and rewarded. So knowing that you’re autistic, and largely misunderstood as the beginning, and then going into burnout. And feeling like you’re at the bottom of the chain of humanity is not a good place to be. So I think the adults are where we need to start having conversations like this so that parents no, this is not regression, it’s burnout. And it requires deep rest.
Debbie Reber 19:01
And as you were explaining that, I’m just realizing how convoluted it can be. There are so many pressures and messages, and I’m in so many groups of parents whose kids are really struggling. And they’re sharing resources in this therapeutic school and this psychiatrist and this and everyone is scrambling to do things, because I think it can feel really helpless for a parent to just say, We’re gonna stop everything for now. I’m just imagining their parents listening to this conversation and thinking, Oh, is this what’s really going on with my kid? How can a parent go about trying to really distill if this is autistic burnout versus a mood disorder versus a tricky puberty experience for an neurodivergent kid? Are there clues to help us have a better understanding?
Kristy Forbes 19:56
I think experience and observation and I know it can be so confusing. And this is something I engage with parents all of the time, the confusion around what something looks like, and where’s the fine line between stepping back, and then getting our children out of their comfort zone a little. I think it’s so, so challenging. I also want to mention the fact that not everybody has the privilege of being able to allow that rest either. And that is so challenging. There are families who are not in a position of being able to come home from work and be with their children. That’s really, really tough. And I think when we offer family support, if we’re not offering support to people of all walks of life, then we’re not really supporting people. Because burnout extends to parents as well. When our children are struggling, we are in survival mode as well. And often when our children start to recover, then we hit rock bottom, because we’ve been in survival mode, and then we get to start processing and we hit burnout. But I think for me, I always say to parents, let’s think about what we’ve tried so far, and what the response was or the outcome. What would happen if we tried those things again? What would you like to try that you haven’t already tried? What do you think that might look like? And most of the time, parents will say, I’ve tried everything, I’ve tried everything, and my child won’t come out of their room, or my child is asleep all day and awake all night gaming. And this is a really important thing, too. A lot of people will think, Well, my child’s just putting it over me, because they’re gaming, they’re sitting around all day, and they’re gaming, and they’re eating, and they’re not leaving the house. And they’re not doing chores, that still burnout. And the gaming factor is really important to take into consideration because that is very grounding, for somebody in burnout to be focused on a device, because it allows us to feel a sense of control over at least some element of our lives. So many times it can actually be healthy for somebody to be focused on something like that. So I think it’s so hard, but trial and error and experience, experience. And so many people will go to professionals and say, look, we’ve tried this, and we’ve tried that, and professionals and there are wonderful professionals. And then there are also because we’re human, right? And we can be limited in our training and what we understand. Many professionals will say to parents, you need to be firmer, or are no, they’re just, you know, they’re manipulating you. Or yeah, I know you’ve tried that before, but we need to try it again. Or they’ll focus on, it’s not okay for them to not be getting exercise. But if you’re powerless over what’s happening, you’re powerless over what’s happening. Other people’s opinions or advice doesn’t change burnout. It just doesn’t. I always go back to my baseline and that is intuition. And experience, you are the expert on your child. And if this is not your child that you’re seeing in front of you, and you can see that they are exhausted or burnt out, then that is what is happening.
Debbie Reber 23:43
Yeah, as you’re talking, I’m thinking about the fact that nobody wants to feel this way. I think parents get frustrated, right? As you said, they’re in the room, they’re gaming, they’re doing this, they seem not to care, they are not showing up for themselves. And we’re offering this and we’re trying to do that for them. And so just that reminder that similar to PDA, it’s not a wone, it’s a can’t, and nobody wants to feel this way, including our kids, if this is what they’re experiencing. And I also just want to touch upon gaming. I’m so glad that you brought that up, because I think that is obviously a trigger for a lot of parents. It sparks fear. My kid’s just gonna spend the rest of their life downstairs on the Nintendo. But hearing that that is actually part of this restaurant can be for our kids. Can you talk a little bit more about what deep rest might look like for children and young people?
Kristy Forbes 24:42
To touch back on that element around gaming and using devices, sometimes that’s the only way we can remain connected to our peers and that world that we want to be a part of. And I think sometimes we easily overlook the fact that every thing we ask of autistic people, or autistic children, connection with peers, learning, engaging with interests and hobbies, development of self, all of those things we often access on screens. And it allows us processing time, it allows us to consider social dynamics and learning how to navigate things like that. So when we limit or restrict screens during burnout, we risk isolating our children further. And that’s not to blame or shame people either. But I think we really need to take a different approach to understanding the value of technology for young autistic people. And I know, I know, I’ve been that parent that is like, Oh, my Lord, my child is going to be 64 living in the basement, playing World of Warcraft. And a lot of autistic adults make a heck of a lot of money off doing. Just want to throw that out there. But yeah, deep rest looks different for everybody. But I will say, for teens and young people, it can be being immersed in technology, laying in bed, if you have a PDA profile, it’s going to require radical acceptance, and stepping back and having faith. And the tricky part about that is that it can take months, sometimes years for someone to be immersed in deep breaths, depending on how long they’ve been exposed to whatever has pushed them into burnout. I think rest looks very different for neurodivergent people that may not be sleeping, but it also may be sleeping. Sometimes our children get into a pattern of sleeping all day and being awake all night. This is because it’s safe. So the baseline is safety, deep rest revolves around what feels safe for the autistic brain. So if we’re sleeping all day, that means we’re avoiding the demands that come with being around people, places and things. So being awake all night allows a sense of safety. Now, not necessarily saying that it’s healthy, or that it’s what we want or that it’s ideal, but it is what it is. And going back to the PDA profile, if we put any kind of pressure around that we prolong that state of being for our children, if we go into their room and say, I wonder if you might hop up and come for a walk today. That’s pressure. There’s such a sensitive reception, or perception of demands in burnout, and that’s for all autistic people. So when autistic people are in burnout, they are extremely demand avoidant. It’s not conscious, it is that hypersensitive neuroception. So it means that threat response is constantly scanning, because it is deeply protective and wise, and recognizes the need for deep rest. So gaming, being in their room with their door shut, shutting themselves off from the world. I’m not a medical professional. But it is definitely worth mentioning. That by engaging with a medical professional around whether there can be some medical intervention such as medication for some families, can be something to look at. Also nutraceuticals you know, looking at vitamins, because we know when our kids hit puberty, especially when they’re neurodivergent. There’s a research body that consistently shows that we start to lacking vitamin D, vitamin C, zinc. So looking at basic things, getting bloods done, and making sure that our vitamin levels are where they should be. Just things like that as well are really, really important.
Debbie Reber 29:21
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Debbie Reber 30:03
One of the things you mentioned that I just want to touch upon because this was a question I get a lot is how long you said it could be months, it could be years. And that it really does depend on how long they were in that environment that kind of pushed them over the edge. So knowing that, if our child is in autistic burnout, we want to reduce demands, and we really want to give them the space and support to rest in the way that they need to, how do we know when they’re coming out of it? And how do we know when an invitation to go for a walk or to join us for this show, or whatever is appropriate? What does coming out of burnout look like?
Kristy Forbes 30:43
Seeing that spark that we recognize small steps at a time. So in my own family, you know, having a teen who spent three years in their room on their device, that was one of the most challenging things I’ve ever gone through as a parent. But for me, it was about completely backing off. And that was hard, because it flies in the face of all the information and books and media and advice that you’re going to get from professionals. Working with trauma informed therapists for ourselves as parents who are versed in autistic burnout is incredibly helpful. Even better, if they’re autistic themselves. I had no idea how long it was going to take. But I knew it had been a long time already. What started to happen was I dropped limits on screens, I would take food to them, instead of saying foods out here. So all the things that we know to try with demand avoidant people, I even dropped that I just took the food to them, I just would text I love You Hope you’re doing okay. And then over time, and this, this was a result of trauma related to school and school avoidance. So over time, what started to happen was they would come out of their room with their device and be around us for five minutes, not necessarily engage, and then go back to their room. That is incredible. I just want to put that out there, the fact that they would come out of their room and be around us for five minutes is incredible. And then that progressed because this is dependent on our response to that engagement too. So we would not make a big deal out of it. We wouldn’t be like, Oh, you’re out of your cave, because I did start out by doing that. And then it kind of grew, then it was coming out and staying for longer and talking to us. And going back to their room. Then it was watching a movie with their device and going back to their room. And now it’s coming out and watching a movie without the device. So small steps, but really, really valuing whatever those small steps look like. If it’s sticking their head out the door and saying, Mom, can you make me some food? Conventionally people would say, oh, that’s, gosh, you’re enabling them. What about their independence? But when a child is in burnout, they’re unwell. So we move into the carer role. And if they’re yelling out, Mom, can you give me some food they’re eating, and they’re engaging. So paying attention to all of the things and our response to that being very low key. Yep, no problem. And very low demand. So not fussing too much around. What would you like me to make sure to make you some pancakes because we get really excited. So what we hear is for every month that a young person was exposed to whatever may have put them into burnout, it could be a year of recovery. I don’t really rely on that. Because I think it depends on every family and every child. But definitely paying attention to the small steps and not jumping ahead and going. Okay, we went for a walk today. Let’s do that every day. Let’s go for a walk every day. I know you can do it. I saw you do it last week. Why can’t you do it now? Because capacity fluctuates. It’s not linear. It’s up and down. And that’s really important to recognize. Also knowing that when we come out of burnout, expect that there will be stages where we will go back into burnout if we’re not careful about how we manage that energy. And that engagement with academia socialization, all those things.
Debbie Reber 34:55
Wow, okay, this is just such a wonderful conversation. I’m so grateful that we’re gonna get to share this with the tilt listeners, because I just think this is going to resonate with so many people. And it just keeps reinforcing for me how programmed we are, right? Learned helplessness. If I do this, this is the message for my kid. And there’s so many societal pressures. And so to really achieve that radical acceptance is not an easy ask for most parents. I mean, it requires a lot of work. And I mean, you talked about having your own therapist, but I just imagined that piece is the biggest pain point for all of this, because it triggers everything in us.
Kristy Forbes 35:42
This is so it. I mean, when I work with families, I don’t even meet the children. I never meet the children, we barely even talk about the children, it starts out like that. But this is about us. And that’s not in a judgy blamey way, this is about on a deeper level, recognizing what is unseen, unheard unknown within us, because this is confronting, it’s isolating. For parents, sometimes we lose people, because of their judgment and criticism and misunderstanding. This is extremely confronting for so many people. And that loyalty that we have with our children can be really tested. Because we have this whole other world that we’re a part of, with that messaging. And that shaming, the shame that parents are exposed to, when they can’t get their children to insert the thing here, you know, like, go to school, or eat healthily, or exercise, or be immersed with peers, or whatever it is, remembering our children are autistic, they’re identified autistic for a reason. If they didn’t meet a criteria, then they wouldn’t be recognized as autistic. And what that means is, then you’re a divergent. And what that means is they diverge from typical neurobiology. And what that means is their needs diverge, the way they show up in the world diverges. And the thing that pushes us into burnout the most is that we are still treated as though we are not autistic. We assess and diagnose and identify people as autistic. And then we send them out into the world as though that never happened. And this starts in childhood, we pop them back into a classroom. And our approaches are always about, okay, let’s implement these supports or accommodations until they behave like they’re not autistic, or until they are completely independent. And that’s a whole other topic to the idea of independence in our children, wanting them to be independent, so early on in life and being shamed when they are not. These are different people, autistic people need a completely different lifestyle. And those families who go through the trauma of being impacted by society’s judgments and criticisms, because they have to do this deep work around unpacking, unraveling, facing that conditioning that we have. I see so many of them come out the other side, and thrive in these incredible ways, and then go on to mentor families that are new to the process. And those families, they’re in crisis. They’re at rock bottom, they’ve done everything they know to do. And they’ve been everywhere that they can think to go to ask for help. And it’s the families that have been there before that offer the most value. And I can’t say this enough. And it’s sad that we have to abandon most of our, I suppose, familiar approaches, but also it’s beautiful and wonderful. This is another point to the idea that self care can isolate people. Community is what these families need. They need community with people who will welcome them with open arms and tell them this is so hard and you aren’t doing so well. Just the value of another person saying I know. I know. I know. Because these families don’t get that.
Debbie Reber 39:46
Yeah, there’s something you said that just really struck me. Of course, I’m taking so many notes but just that reminder that I think so many parents get the diagnosis for their kids. There on board, right in this neuro diversity affirming approach to parenthood, but there’s still a part of them for many of them who are like, and I have a relationship with this kid. And we can progress in this way. Like I think it’s just kind of a continual. It’s not letting go about continual acceptance, I guess it’s moving back to that radical acceptance. But it isn’t an S switch. It is an easy journey. But just that reminder that our kids, if they have this diagnosis, that’s who they are. And we need to keep that in mind at all times.
Kristy Forbes 40:36
Yes, I, you know, it struck me yesterday, I forget. Because I’m so immersed in autistic culture and identity in a way that is affirming and allows people to thrive and show up in the world in radically accepting and beautiful ways. And yesterday, I did an interview with a clinical psychologist who specializes in youth and mental health, and I was interviewed for a school channel, but they have and I was asked by the cameraman off camera, he said, Do you mind if I ask you a question? This is really fascinating. And he said, How do I know if it’s just the way I am and just who I am, or if I’m autistic. And I said, I don’t think there’s a difference. I mean, I’m just who I am and the way I am. And I’m autistic. Because we’re still looking at the disorder narrative, right, we’re still looking at, I use identity first language because I am autistic. I am an autistic being. I’m not a person with autism, because I’m not a typical person with a side of autism that can be treated, or cured, or hidden away. I am completely autistic, it influences everything about me, my sleep, the foods, I choose the way I process information, the way I smell, see, hear taste, feel, the way I relate to myself and others and the world. It is an autistic neurobiology. It’s not a disorder, a disability absolutely for many people, but also that we want to neutralize the word autistic, we’re not superheroes, it’s not a superpower. It’s not a disorder, it’s just a different way of being. And what does create the disorder are the expectations for us to be anything other than autistic. Imagine if these families started out this journey immersed in autistic culture, the outcomes would be completely different. There would be this radical understanding that our, I don’t have an orange here, I have an apple. Instead of you know, I use that analogy. When I think about the 33 years of my life, I spent trying to be a better Apple, when the whole time I was a whole incomplete orange, a perfectly normal, complete, Orange. So this is our normal being autistic is our normal, and we’re never not going to be autistic. That causes burnout, that masking causes burnout above anything else. The identity part of things, immersing our autistic kids with autistic culture, their autistic peers, is so important. It normalizes their experience. And that creates a healthy sense of self. And that’s a great beginning.
Debbie Reber 43:51
So I appreciate everything that you just shared. Very powerful. As a way to wrap up. One of the questions I have gotten about autistic burnout is how do we help people better understand this? That’s a whole other conversation? How do we help teachers and well meaning family members and therapists, but do you have any favorite resources on autistic burnout that we could share with people to help them understand what’s going on?
Kristy Forbes 44:19
The autistic community in general, creates resources and information on burnout all of the time. Kieren Rose is a great resource around autistic masking and how it leads to burnout. treating it as an illness, treating it as a condition because that’s what it is. It’s a complete physiological, it’s a neuro physiological condition that we move in and out of, and it is utter exhaustion. It’s not just fatigue. It’s a whole body shut down. You could Google autistic burnout, but I would always recommend that your reading be informed by autistic experience, people who have been there many times.
Debbie Reber 45:06
Thank you for that, would you share with us where people can connect with you and about the ways in which listeners could work with you and be a part of your community?
Kristy Forbes 45:17
Yes, so you can find me at www dot kristyforbes.com.au. I run some core programs, six week programs for families raising autistic children. There’s one for families raising children with a PDA profile. And I have a new program I just rolled out called critical care and recovery. And that’s for children in burnout. It’s for families whose children are in burnout. It’s also a six week program with a coaching component as an optional feature. We also have a private closed membership. For families who are raising autistic children. It’s beautiful, it’s one of those spaces I talk about where families have gone through it all and we have mentors in there who are all autistic raising autistic children. So my passion is supporting families to better understand the autistic experience. But when I say supporting families, I mean, affording that compassion and empathy to parents. So we offer safe, gentle spaces that don’t get caught up in terminology and shame and blame. We want a soft place for families to land.
Debbie Reber 46:33
That’s wonderful. And such wonderful resources. And I’m really excited to hear about the newer six week Critical Care Program. And listeners, of course, I will have links to all of these resources on the show notes page as well as you guys if you haven’t listened to my first interview with Christy, we talked a lot about PDA in that one. And the world of PDA even since then, in three years, I feel like it has really opened up especially here in the US, there’s a growing awareness. So definitely go back and listen to that episode as well. And I just want to say thank you for your generosity for getting up super early in Melbourne to have this conversation with me and to just so thoughtfully guide us through this experience. This is so helpful, and I’m just really grateful.
Kristy Forbes 47:21
Thank you for I’m always just so grateful and want to acknowledge and recognize the fact that you are seeking out autistic experience. And that means so much to the Autistic community to be heard amongst other communities, which you know, we are the same community, really. So, thank you so much for inviting me to be back on again.
Debbie Reber 47:48
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