Not Your Mama's Autism (NYMA) podcast

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Treść dostarczona przez Lola Dada- Olley and Lola Dada-Olley. Cała zawartość podcastów, w tym odcinki, grafika i opisy podcastów, jest przesyłana i udostępniana bezpośrednio przez Lola Dada- Olley and Lola Dada-Olley lub jego partnera na platformie podcastów. Jeśli uważasz, że ktoś wykorzystuje Twoje dzieło chronione prawem autorskim bez Twojej zgody, możesz postępować zgodnie z procedurą opisaną tutaj https://pl.player.fm/legal.

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We Have The Receipts

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Hosted by Chris Burns, We Have The Receipts is a bi-weekly all-access deep dive into Netflix Unscripted Reality! Each episode will bring you closer to the people behind the reality, with the free-flowing depth of podcast conversations and viral elements of TV’s best talk shows. We Have The Receipts is an upbeat, fan-first destination to uncover more insider secrets, more expert hot takes, and more off-the-rails drama from their favorite Netflix reality stars.

Not Your Mama's Autism (NYMA)

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NYMA is the story of one family's experiences with autism through a multi-generational lens. Hosted by a woman who is both the older sibling to a non-verbal man living with autism and now the mother of two children on the autism spectrum, NYMA takes on topics like autism awareness now compared to thirty years ago, past and current treatments, allies, special education pre-Covid-19 and during Covid-19, disability rights broken down by zip code, marriage therapy along the autism journey, intersectionality of race and disability, corporate inclusion efforts and much more.

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Not Your Mama's Autism (NYMA)

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Sleep and the Brain: A Talk With Angela Tzelepis, PHD 52:11

8 dni temu52:11

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Summary In this conversation, Dr. Angela Tzelepis discusses the importance of sleep and its benefits, particularly for children. She explains how sleep restores vital energies, contributes to good development, and protects brain health. Dr. Tzelepis also addresses common sleep disorders in children, such as insomnia and sleep apnea, and the challenges of using CPAP machines. She highlights the role of sleep hygiene and the impact of electronics on sleep quality. Additionally, she discusses the relationship between anxiety and sleep problems and provides insights into behavioral interventions for improving sleep. Takeaways Sleep is essential for restoring vital energies, promoting good development, and protecting brain health, particularly in children. Common sleep disorders in children include insomnia and sleep apnea, which can have significant impacts on overall health and well-being. Sleep hygiene, including consistent bedtimes, avoiding electronics before bed, and creating a sleep-friendly environment, is crucial for improving sleep quality. Anxiety can contribute to sleep problems, and behavioral interventions can be effective in addressing sleep issues in neurodivergent individuals. Support from family and a holistic approach that considers the individual's environment are important in managing sleep challenges. Chapters 00:00 Introduction and Love for Sleep 01:08 Benefits of Sleep 03:49 Sleep and Growth in Children 06:34 Common Sleep Disorders in Children 08:22 Challenges of Using CPAP Machines 11:23 Causes of Insomnia 14:07 Misconceptions About Sleep 15:46 Sleep Problems and Anxiety 29:04 Challenging Situations and Behavioral Interventions 36:26 Sleep Hygiene and Power Naps 43:32 Starting Points for Improving Sleep 45:07 Conclusion and Resources Transcript Lola Dada-Olley (00:07.3) Dr. Zelefis, thank you so very much for joining us on the Not Your Mama's Autism podcast. Angela Tzelepis (00:15.527) Thank you for inviting me. I'm looking forward to our conversation. Lola Dada-Olley (00:21.518) Me too. I look forward to talking about sleep. Sleep is one of my favorite hobbies. I don't do it enough. And I think someone like you, I love it. I actually included in my bio when I talk, when I give my talk, I flat out put it in there that I enjoy sleep. And sleep is one of my pastimes. So I took me longer than I should have to understand the Angela Tzelepis (00:29.762) Yep. Lola Dada-Olley (00:49.614) of sleep. So for those of us that maybe took things for granted, I know in recent years it's been a lot more to the forefront the importance of getting good sleep, but for those of us who still need some time to fully get to where we need to be when it comes to sleep, what are some of the benefits of sleeping regularly? Angela Tzelepis (01:07.291) Yeah. Yeah. Yeah, you're definitely right. There's been an explosion in understanding sleep. think in the years past, it was really under appreciated. And now I, you know, put it up there with, you know, all those good habits that we should be doing like eating well and exercising and sleep. That's, that's up there. And so what are the benefits of sleep there? It basically it restores our vital energies. It gives us a a relief from the day long bombardment of stimulation and aggravations and things like that. So it gives us a time to kind of restore ourselves. And for kids, what's really important is that during deep sleep, there's a release of a growth hormone that really contributes to good development. so sleep in children is especially important. Angela Tzelepis (02:12.507) what we know about sleep, a lot of what we know about sleep comes from, what's that? Lola Dada-Olley (02:13.264) So when you're talking. Lola Dada-Olley (02:20.827) go ahead, go ahead, I'll follow up. Angela Tzelepis (02:24.337) We're still okay. A lot of what we know about sleep comes from the research of sleep deprivation or not having enough sleep. And that's really where you'll see it clinically. You'll see kids that don't have enough sleep, they fall asleep in class, teens and adults get drowsy while they're driving. And in fact, one of the leading causes of accidents is not alcohol. It's actually drowsy driving, even though there's not campaigns out there like there are for drunk driving. Because all it takes is one brief moment of a micro sleep where you're not off and you get in an accident. And then the other thing we see a lot with kids that are sleep deprived is that they're irritable. They have, they can't regulate themselves. And so they can look like they have ADHD or they can look like they have other problems, but it may be a lot to do with not having enough sleep. You need sleep to be able to concentrate, pay attention, so you'll find sleep deprived kids don't do as well in school, they're not off in class, and they have a hard time focusing on their work. So it has huge, huge implications. Lola Dada-Olley (03:49.966) You mentioned sleep, tying sleep to growth and children. This is also tied to brain health as well. Could you tell us a little bit about the importance of sleep to growing brains? Angela Tzelepis (04:07.525) Yes, yes, it's important for the growing brain. In fact, there's a growing body of research that's showing us the physiological effects of sleep and inadequate sleep. so there's research that shows that, there's huge body of research now supporting that lack of sleep, inadequate sleep leads to obesity because there's certain hormones that get released during sleep that suppress appetite. And if you're not getting adequate sleep, that appetite suppression isn't going to be there. So it can lead to overeating, feeling hungry a lot, and then it can contribute to obesity. It can contribute to diabetes, heart problems, hypertension. And in fact, there's even more recent studies that are showing that The better your sleep is during your adult years, your young years into adulthood, the more protective that is from dementias and Alzheimer's. So it has significant implications on protecting the brain in many ways. And it's a very complicated science and I can't speak to the details of that, but I do understand, clearly understand the impact it has on our overall health. Lola Dada-Olley (05:19.568) Hmm. Angela Tzelepis (05:34.833) You know, not just feeling good in the moment, but it has a lot of long term implications. Lola Dada-Olley (05:43.608) You are a clinical psychiatrist. You consult at Easterseals on the autism evaluation. It's like, what did I say? I'm sorry, did I say clinical? I meant clinical psychologist. Did I say psychiatrist? I'm sorry. Yes, you are a clinical psychologist. Psychologist, apologies. Yes, you do. Yes, yes, yes. You are a clinical psychologist at Easterseals on the autism evaluation team. And you also. Angela Tzelepis (05:48.125) psychologist. Angela Tzelepis (05:52.561) Yes. You said psychiatrist. I'm a clinical psychologist. Yeah. Yeah. I have a PhD, not an MD. Yeah. Lola Dada-Olley (06:11.576) work at Children's Hospital of Michigan in the pediatric sleep clinic. So that's where I really wanted to hone in on when it comes to that's why I brought up growing brains. And so in your practice, what are some common sleep disorders that you see in growing and growing kids? Angela Tzelepis (06:33.819) Yeah, yeah, in kids. Probably the most common thing that we see and I see in practice is insomnia, that difficulty falling asleep, falling asleep at the beginning of the night, but then also staying asleep throughout the night. So those those awakenings that happen in the middle of the night and then difficulty falling back asleep. That's I think the biggest and most challenging thing. We have in the sleep clinic, we see a lot of kids with sleep related breathing problems, sleep apnea, and that disrupts And one of our challenges in working with children that have sleep apnea is helping them get on board and complying with the use of CPAP. on a regular basis. And it's especially challenging with kids that have autism because of the sensitivities that they have. It's hard for them to wear a CPAP machine. And then I would say the other thing that we see almost regularly, I see it in my clinical practice as a psychologist, and then in the sleep clinic is poor sleep hygiene. People not... Lola Dada-Olley (07:33.305) Mmm. Angela Tzelepis (07:58.299) giving sleep the importance that it needs and not engaging in good practices that will assure good sleep. And then there's other things that we see, but those are, I would say, big three things that we deal with, the insomnia, the sleep apnea, and poor sleep habits. Lola Dada-Olley (08:22.202) I want to dig a little deeper on the sleep apnea portion of your answer. So sleep apnea and then with kids with autism, the CPAP machine and having maybe some sensory challenges depending on the child, it could be definitely challenging. But are there alternatives like mouth devices or oral devices? there something that other things that folks on the spectrum or other neurodivergent people can do? Angela Tzelepis (08:48.731) Yeah, yeah, yeah. Well, the first thing that we actually look at with kids is their tonsils and adenoids and see if those can be removed, if that's contributing to the apnea. And if you can do that surgically and then reduce the difficulty with breathing, that is success. But if you have to use the app, the machine, there are different masks. The industry has worked towards creating different masks, nose masks, and masks that can be more comfortable. And so there are options, but it's still a challenge. It's going to be a challenge. So the mouth guard, those we don't do in our sleep clinic. You'd have to go to a dentist and see if you're... you know, candidate for the mouth guards. At the end of the day, is a huge struggle. It's a problem for adults that don't have any of these developmental challenges or sensitivities. Compliance rate for adults is low. So when we move it down to... Lola Dada-Olley (10:01.668) Yeah, sensory, yeah. Lola Dada-Olley (10:12.686) Yeah. Angela Tzelepis (10:14.807) to get kids to do it, it's very frustrating for families. But we work with them and we try to, you know, we have what we call desensitization protocols, getting them to get used to the mask and the air pressure during the daytime and try to make it into a more fun thing as much as possible. It takes a lot of support from the family. It's not like you can... your kid to bed with that mask on and then expect that they're going to be using it throughout the night. Lola Dada-Olley (10:53.53) You also mentioned insomnia, and I wanted to dig deeper there a bit. So with insomnia based on what you've seen in your practice over several years now, are there certain triggers to it that you've seen in your practice as to what causes that, particularly for neurodivergent kids or adults as well? Angela Tzelepis (11:18.415) Yeah. Angela Tzelepis (11:22.757) Yeah. So, or adults, yeah. Probably one of, you know, there's a number of factors and a number of situations and behaviors that go into, that contribute to insomnia. would say probably the first is bad sleep hygiene, bad sleep habits. And starting with having inconsistent bedtimes, inconsistent sleep times. Our sleep in our brain requires us to be consistent that we're going to bed and falling asleep at around the same time every day and waking up at the same time every day. And when you deviate too much by an hour or more, you can have some flexibility, but if you deviate several hours a day where you're sleeping in, if you sleep in, then it's going to be hard to fall asleep the next night. and then you're going to bed later and then you're sleeping in longer. And so that inconsistency is probably the number one cause of insomnia, I would say. The other thing is use of electronics. People, not just children, but adults go to bed with tablets and phones and You know, that leads to a lot of stimulation. Your mind is busy with whatever it is that you're looking at, whether you're playing games or you're chatting with somebody or shopping or whatever you're doing that keeps your mind going. But above and beyond that, what using electronics at bedtime does in your bed is that it's sending light signals from the eyes to the brain and it's telling the brain to stay awake. And we have a natural hormone that gets released called melatonin, which most a lot of people have heard of. Melatonin is what's released to help us sleep. And the thing though with the release of melatonin, it only happens when the environment is conducive to sleep, meaning that it has to be dark. If the minute you send a signal to the brain, a light signal, the melatonin production drops. Angela Tzelepis (13:48.445) So you're not getting your melatonin to help you fall asleep. And that is a big contributor to sleep problems. I tell families all the time in the sleep clinic that, you know, 150 years ago, people didn't have sleep problems. Not the way that we do today. It was dark and you slept and it was light and you were awake. Now with, you know, the advent of... Lola Dada-Olley (14:07.726) Hmm Angela Tzelepis (14:18.213) light bulb and we've got more light in their homes and then more and more light and now we got light right in our hands and sending signal to the brain. We've created a society with many sleep problems. So this is across the board whether you have any developmental challenges or not that is a significant contributor to sleep problems and falling asleep. Angela Tzelepis (14:46.717) You know, those are the big contributors to insomnia. The other is, well, there's more. Taking naps during the day is going to make it hard to fall asleep. And then we move into the realm of other challenges like anxiety. Children on the spectrum, neurodivergent children and individuals have can have a lot of anxiety. And so the more anxiety that's present, the more challenging your sleep is going to be, because you're laying in bed thinking. For children, they're afraid of the dark. They're thinking of monsters. They want their parent next to them. For adolescents and adults, we're thinking about all of the challenges of the day and what's going to happen tomorrow and who said what to who. that kind of anxiety can lead to sleep problems. And then, you know. Lola Dada-Olley (15:51.556) that also lead to going to bed and then waking up in the middle of the night? One of the things you mentioned earlier. Could that also, could anxiety also be a contributing factor? Angela Tzelepis (15:59.567) Yeah, yeah. yeah, what could yes, anxiety. Yeah, you know, what what happens is that, you know, there's this idea that that that sleep is that you fall asleep and you stay asleep throughout the night. But that's not how sleep works. In fact, you know, we go through sleep cycles, and we go from a light sleep to a deep sleep, and then we go back to a light sleep. And we do that five to six times a night. And when you come back to the light sleep, you're going to briefly wake up, you know, for 10, 15, 20 seconds. Lola Dada-Olley (17:23.504) So let me dig deeper on that. So I have two children on the spectrum. I have one with significant sleep issues. And this, what you just said about the waking up in the middle of the night and looking around and not seeing your parent, depending on the season, Our baby girl could, she's 11 now, she could probably wake up depending on the week, three to four times a week around 2 a wakes up, walks into our room and looks for dad. So is that, how would you wean off of that? It's interesting, I didn't realize that it was a, they may not be used to going back to sleep without a parent. Lola Dada-Olley (18:29.328) We pray with her and put her down to bed and then we close the door and she'll fall asleep on her own. But then in the middle of the night, she will wake up, walk into our room and look for her dad. Lola Dada-Olley (21:08.528) Yeah, it happened the other night, which might be why I had that Ferdinand, that slip of calling you psychiatrist instead of psychologist. I have apologies for that. Apologies for that. that is something to think about. Thank you. So thinking about sleep generally, what are some common misconceptions you've come across in your practice when people talk to you about sleep or maybe when you talk to others about sleep? Lola Dada-Olley (22:26.617) Okay. Lola Dada-Olley (23:25.253) Right. Lola Dada-Olley (24:22.842) based on what you see. Lola Dada-Olley (24:29.284) Go ahead, finish what you were saying. Lola Dada-Olley (25:14.394) So moving from misconceptions to things you've seen in your practice, industry research you've either participated in or you've come across, what could be some of the reasons as to why some neurodivergent people struggle with sleep? Lola Dada-Olley (28:35.48) of taking all this together and thank you for including that. think it's really important to look at not only the holistic nature of the person that you're treating, but also the holistic nature of the environment around them. So with thinking that through some more, can you walk us through some of your more challenging situations that you've come across and some behavioral interventions that have proven to be successful. Lola Dada-Olley (32:21.444) Hmm. Lola Dada-Olley (33:30.436) Yeah. Lola Dada-Olley (33:55.114) Yeah, I can imagine. can imagine, especially if you have... Yeah, especially if you have work though early in the morning, that's really tough. That's really tough. But it's definitely, it's a marathon, not a sprint is what you're saying from a behavioral intervention point of view, which makes sense. That's a lot of what positive behavioral support, you know, all those types of... all those types of philosophies, that's where it comes from. The incremental progress is still progress, so that makes complete sense. Lola Dada-Olley (34:49.572) Yeah. Lola Dada-Olley (36:26.426) So we talked about sleep hygiene. Lola Dada-Olley (36:59.242) because I was going to follow up. true. I was going to follow up with that because I heard that the power nap is supposed to be a way to at least power through the rest of your day. that's helpful. So we talked a little bit about sleep hygiene, but what does sleep, what does good sleep hygiene look like? Lola Dada-Olley (37:28.324) So like setting the tone. Yeah. So setting the tone as you go into the evening. Lola Dada-Olley (40:41.399) Hmm. Lola Dada-Olley (40:49.39) You might be describing me there as well. Okay. Lola Dada-Olley (41:09.166) to stay asleep on their own apparently. Lola Dada-Olley (42:05.678) be some white noise what does white noise work Lola Dada-Olley (43:05.257) Sounds wonderful. Thank you. Thank you really and truly. I appreciate you spending time. So let's say you are either a child or an adult, neurodivergent or a family member, a loved one who wants to help their loved one get better sleep. Where should they start? If they don't have the doctor's lupus near them right away, at least, where would they start? Lola Dada-Olley (44:34.992) Thank Thank you. It's much appreciated. Thank you for all that you do. Lola Dada-Olley (45:07.032) Wonderful. Yeah, please do. Please. And I'll also put in the show notes. Lola Dada-Olley (45:19.824) Thank you. What's the name of the site? Lola Dada-Olley (45:27.383) okay, that's the name on the side. Okay. Thank you. Thank you so much.…

Not Your Mama's Autism (NYMA)

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Better Understanding Challenging Behavior: A Talk with Larissa Heise, BCBA 39:32

5 weeks temu39:32

39:32

Summary In this episode of Not Your Mama's Autism, host Lola Dada-Olley speaks with licensed social worker and BCBA Larissa Heise about the complexities of challenging behavior in neurodivergent individuals. They discuss the definition of challenging behavior, trends observed in recent years, the importance of identifying triggers, and the role of sensory needs. Larissa emphasizes the need for individualized approaches to support, the common misconceptions surrounding challenging behavior, and the importance of understanding the full context before implementing interventions. The conversation also covers strategies for navigating support systems and the significance of insurance in accessing professional help. Takeaways Challenging behavior varies in definition and context. Challenging behavior often exceeds a family's ability to support. Safety concerns are a primary focus in identifying challenging behavior. Attention-seeking behavior is often misunderstood; it is about connection. Sensory needs can become more complex as individuals grow older. Understanding individual needs is crucial for effective support. Misconceptions about challenging behavior can lead to ineffective interventions. Gradual approaches are necessary for managing triggers and interventions. Reassessing strategies is important when previous methods stop working. Navigating insurance and support systems is essential for accessing help. Chapters 00:00 Understanding Challenging Behavior 02:59 Trends in Challenging Behavior 06:06 Identifying Triggers 09:06 Complex Sensory Needs 12:00 Misconceptions About Challenging Behavior 15:05 Approaching Triggers and Interventions 19:04 Reassessing Strategies 24:03 Navigating Support Systems 35:55 Getting Started with Professional Help Transcript Lola Dada-Olley (00:02.364) Larissa Heise, thank you. Thank you for being on the Not Your Mama's Autism podcast today. Larissa Heise (00:10.317) Thank you for having me. Lola Dada-Olley (00:13.148) So you are a licensed social worker. You are also a BCBA for those listening who don't understand what that acronym means. In these neurodivergent streets, it means board certified behavioral analyst. I am going to really enjoy this episode talking to you about behavior. So let's talk about challenging behavior. But before we do so, let's do some level setting. Because challenging behavior means different things to different people. So what would you identify as a challenging behavior? Larissa Heise (00:57.485) I'm going to give you my personal definition and then I'm going to give you like what I think out in the world people are like generally having consensus on. Given the work that I do, I work a lot with family, families and very, a very parent centered model of support in the work that we do and some of the programs I supervise, very unique programs actually compared to maybe some other providers who are very family centric kind of approach to treatment. I look at challenging behavior as being something that exceeds the family's ability to support. And that can mean different things for different people. I've had some families who are dealing with the more traditional definition of challenging behavior, which I'm going to share, but I've had other families who, you know, maybe it's not at a level of safety, but they are so overwhelmed. They still don't know what to do. And it's leading to ER visits and things like that. But in terms of like what I think most people as a provider, right, most people would kind of agree upon in terms of challenging behavior are behaviors that are at risk of safety concerns. You know, generally we're looking at things where people are harming themselves, are at risk of harming others, are extremely dysregulated to the point where they're having a difficult time day to day. in their lives, whether that's across settings. Typically we are seeing if somebody has kind of challenging behaviors or behaviors of concern, they're exhibiting them across settings and it's really impacting their quality of life usually in multiple ways. So it can look different, right, across age, situations, settings, but that's generally what I think, you know, the provider community is looking at. It's like behaviors that put people at risk of harm. or limit their ability for quality of life. Lola Dada-Olley (02:59.388) Well, thank you for level setting. Cause I think in the past, it might have been what you just described plus behaviors deemed quote unconventional by perhaps neurodifficult. And that to me are not the type of behaviors that should be prioritized in any way as. Larissa Heise (03:11.532) Yeah. Larissa Heise (03:18.111) Yeah, no, there are behaviors that make people uncomfortable. There's behaviors that people don't understand, right? But when we're talking about challenging me, we're talking about, really, I want to anchor it to like safety, safety concerns and things that are impacting the individual's quality of life, not necessarily somebody's perception of quality of life, Lola Dada-Olley (03:25.276) Mm -hmm. Mm -hmm. Lola Dada-Olley (03:44.091) Yep. So, looking at that as the level setting, what trends have you seen in your practice concerning some of the most common types of challenging behaviors that people, caregivers, educators are experiencing, are witnessing, I should say? Larissa Heise (04:08.469) I think recently especially, feel like in last five plus years, there's been so many difficult things in the world that have impacted everyone. And we've seen quite a bit of increase in behaviors where people are at risk for immediate danger. I would say there's always different levels, Behaviors, a lot of people I talk to, they're like, comes out of nowhere. Lola Dada-Olley (04:24.038) Yeah. Larissa Heise (04:39.105) That's very unusual for it to actually come out of nowhere. Usually it builds up over time, right? So we usually see people start the lower levels of behavior of kids who, if they're unable to communicate in like a traditional sense, they have a difficult time getting their needs met. We're seeing behaviors where they're finding ways to get their needs met. People get their needs met any way they can, right? And that might include hitting, biting, kick -gagging, throwing things. lot of property destruction is typical. crying as kids get older. Oftentimes we see if those behaviors aren't supported or we're not giving ways to get those needs met or teaching ways to get those needs met. We can see them intensify right and so. Kids get bigger. And sometimes depending on their individuals like. Skill level or ability to communicate. Lola Dada-Olley (05:29.19) Yeah. Yeah. Larissa Heise (05:36.663) they might still use those behaviors to get their needs met, but they're in a much bigger body now, right? They're adults or they're teenagers and they still need to find ways to get their needs met. And those behaviors, even if they're exactly the same as they were when they were younger, can be very different in terms of safety as people grow older. generally like those kinds of things. And I would say it's across settings. think, you know, different... people in different places, like in home versus school, have different resources. So maybe there's more to support in different areas, but oftentimes, like, not always, but more often than not, we are seeing those more intensive behaviors across all different places. Lola Dada-Olley (06:25.81) So when you mentioned earlier that you said certain, some people say it quote, comes out of nowhere, but in your practice, you've actually seen that that's almost not, almost always never the case. Could you give me an example of maybe a trigger that maybe most people don't notice that after maybe you all have kind of traced back the steps, you've discovered that this particular trigger is something that. Larissa Heise (06:53.122) Yeah. Lola Dada-Olley (06:56.413) folks should look deeper into. Larissa Heise (06:57.099) Yeah. I think there are triggers that think a lot of people pick up quickly, right? And then there's the sneakier ones. But a lot of people, can usually tell like, it's because I set a limit or I said, no, we can't do that right now. We have to wait. Like those are common things or, you know, things like that. But I feel like if somebody has like a complex sensory profile, a lot of people assume Lola Dada-Olley (07:09.702) Yeah. Larissa Heise (07:29.217) behaviors are, that's attention. I will say this, attention is not a bad thing. I always try to reframe that for people like attention is connection. People are seeking connection, maybe they're doing that in ways that maybe want to shape that to a different, you know, that's not going to harm somebody. But a lot of times, sensory needs are often overlooked attachment. I think a lot of people overlook like a lot of individuals. who have autism, people are just looking at autism and not looking at other co -occurring mental health needs, especially even for little itty bitties of like, hey, if they were moved a lot or they were adopted or they don't know how to connect, maybe it is related to autism, they just don't know how to connect or you don't know how to connect with them, right? We don't know how to like bridge that. that difference, neurological difference, like kind of join each other. A lot of times that's happening more than I think people realize and they're kind of thinking, it's attention. I'm like, no, no, attention is important. Like, let's talk about that. Like, what does that mean? Like, what are our relationships like? So yeah, common triggers that people don't always think of is like that relationship with other people. Having like a solid foundational relationship can make a big difference. And sensory needs, especially as people sensory needs get more complex. That gets tricky. Lola Dada-Olley (09:06.396) So can you give us an example of a situation where maybe a sensory challenge or a sensitivity may grow more complex as a person grows up? Larissa Heise (09:23.383) grows more complex. Lola Dada-Olley (09:26.47) or just, like for instance, I can give you an example in my own life with my son. So I have two babies on the autism spectrum, one now is a preteen, the other one's a teenager. So they don't want me to call them their babies, I'm sure, but they will always be my babies. I remember when my son started middle school, he used to always, he... Larissa Heise (09:28.587) Yeah, I'm sure I think I'm gonna do it. Sure. Yeah. Lola Dada-Olley (09:52.882) order to center himself. He likes the feel of jumping. So we got this big trampoline outside and as he's growing up, he used to say in very technical terms, Mommy, I need to get my wiggles out. I said, okay. And then I think he was starting seventh grade. Yeah, I thought that was fine to say. I think when he started seventh, he just started eighth grade today actually. Larissa Heise (10:11.117) I mean, I still say that. Lola Dada-Olley (10:20.146) But I think when he was entering middle school, so he was entering sixth grade and I said, Baby, you want to get your wiggles out? He said He goes I don't call it wiggles. I'm getting centered And I said Okay, I stand I stand corrected I stand corrected But I do wonder what the older teenager slash young adult Larissa Heise (10:35.271) Sure. Okay. Lola Dada-Olley (10:49.404) version of my son when he needs to feel centered and there's not a trampoline nearby. So I'm starting to get him to think of alternatives that could aid him in getting centered so that he's not so sensory seeking that he must find a trampoline. You can imagine if he's in an office setting, he's in a school, if he's in a college lecture room, if he's just... Larissa Heise (10:56.236) Hmm. Larissa Heise (11:01.623) Yeah. Larissa Heise (11:05.73) Yeah. Lola Dada-Olley (11:16.476) taking a walk in nature and he suddenly feels that need to feel centered. So that's one example of what I'm thinking of how sensory needs may become more complex and change over time as someone literally grows up. Larissa Heise (11:27.607) Yeah. Larissa Heise (11:32.023) Well, I think too, you know, especially in the example you give, like... Larissa Heise (11:40.063) I think that honestly, I love that example because I think it's just a good point of like how we approach supporting people learning about their own needs and like how to if, if you know, if he has a good understanding of like what his needs are in order to regulate in order to become centered, which I love, whether it's wiggling or, know, you know, if he has an understanding of that, then, you know, then we can look at the problem solving, like what do you need to Lola Dada-Olley (12:00.923) Yeah. Larissa Heise (12:08.907) meet that need either fully or in part, depending on what settings you are. And I think a lot of individuals when they're, you as they grow, they don't always have that support or they don't have an understanding always of like, and it's like a learning process, like everybody, right? Everybody as we grow up, we are trying to figure out what our needs are, you know, and I always say to like, everybody has sensory needs. I don't think we're always aware of them. Obviously, autistic individuals are like, they have a larger need or have a more acute need oftentimes that they need to attend to in a lot of ways, whereas neurotypical people, we might not just think about it, but we have little things that just maybe aren't as interfaced sometimes. But yeah, I think that does become the trick as we grow older, if our needs are less able to be met in different ways. Lola Dada-Olley (12:42.938) or more visual need, like it's more obvious. Larissa Heise (13:08.459) settings or less socially acceptable. Sometimes, you know, that's the barrier to or just even like honestly, I was even thinking more basic of like, sometimes people like, I think this is what this person needs. I don't know, we're trying to help them figure it out. And like, that can be just tricky in and of itself. If especially if sensory needs are changing over time. So a lot of people do have very consistent sensory needs like through their life, but other people, they change, like they change and what they need to regulate. Or they're very different in different situations, like some situations, like I need more input, whatever that input looks like in others, it's like I need to stop and I need to like unwind and kind of have some quiet. And so yeah, just, you know, as life gets more complicated, it's hard to know, it's hard to know, even at, you know, I everybody kind of goes with that in some ways, but like add that other layer, right? Of like, okay, what do I need to do to take care of myself and to make sure I'm supported and not just in my own home, right? When I'm out and trying to be part of the world. Yeah, it just, I honestly, I don't even think I have a better example. I was like, no, I love that. Cause it's... Yeah, it's just, especially when it's physical regulation, like to be able to like move and so yeah, just gets more complicated, like I think as we get older, so. Lola Dada-Olley (14:43.384) life just gets more complicated as you get older. I think there's this funny song that someone introduced to me and my husband years ago. It's out of Nigeria. Our family's originally from Nigeria and it's the loose translation is basically that adulthood is a scam. Larissa Heise (14:46.112) Yeah. Larissa Heise (15:05.728) You Lola Dada-Olley (15:06.45) I think there's a little bit of truth to that. There's some truth to that. So what do, in your practice, what are some things that you see that people commonly get wrong when it comes to challenging behavior? So some common misconceptions in this space. Larissa Heise (15:10.157) Yeah. Larissa Heise (15:37.025) I think one of the most common misconceptions is, and I don't think people do this on purpose, but a lot of times, every, you know, we're all human, right? We want to make sense of what we're seeing. And so a lot of times they're like, well, I saw it with this kid. So this was what's happening with this kid. And even within a family unit, right? Like, well, you know, the brother did X, so he's doing the same thing. And you're like, or like, I went through the same thing. kind of saying, well, I know that's what I need. That's what it's like we, we don't sit and really look at the situation as a whole, and really kind of evaluate the individual's needs. We oftentimes, I think it's honestly like we do this also as way to empathize with like, well, this is what I think they need to like, I'm trying to help. Like, it's not, it's not without good intention, as I guess when I'm saying, but people think like, They kind of fill in the blanks without really looking at the whole picture. And they try to put things in place to support that individual with good intentions. And they just sometimes miss the mark or sometimes make things worse unintentionally. Where they're like, I thought I was helping. It was nice. I love the effort. Good intentions does count, but we also want to really put that person in the focus of like, there's a saying that I'm thinking of, it's not what I think you need, it's what you think you need. Do you know what I mean? not, it's what really dig down of what they're trying to, what need they're trying to get met in that moment. without trying to put too much of our own bias, our own fill in the blanks, kind of, it's kind of like do the work and let's like really dig in and get a full understanding. There's somebody in the ABA field who says, Dr. Hanley who talks about like, I'm not gonna try to change anything until I fully understand your needs and your behavior because Lola Dada-Olley (17:30.087) Yeah. Larissa Heise (17:50.795) you know, for if we don't have an understanding, yeah, there might be things we have to put in place to just be safe. But like, we're not we're not going to teaching new things or doing new things until we really understand where that's coming from is it's going to fall flat or be frustrating for the person. Right. And learning new things is already frustrating, even when it is a valuable skill, let alone something that they're like. That's not what I need. That's not what I need. Lola Dada-Olley (18:16.292) That may not come naturally. Yeah. Larissa Heise (18:20.529) so I think that's the most common thing of like, try and really to step back and say like, this is a need. Like, and it's not about me or any, like it's what does this person need in this moment? And am I really looking at all the factors and some, and that's hard. I'm not saying that's an easy thing to do, but like really evaluating, and really digging into like, what, what do they need in this moment? What's driving this? Lola Dada-Olley (18:51.218) So the build upon what you said, right, of the importance of trying to understand the fullness of the situation before you introduce the behavioral intervention. particularly for folks on the spectrum who may have communication challenges, who may be minimally speaking. Lola Dada-Olley (19:19.698) How do you approach triggers? Is the goal to try and separate them from triggers as much as possible so they don't come into contact with them? Is it the goal to knowing that it's going to happen, that trigger's going to come to work more on that incremental approach? Is it some mix of the two? How do you approach those situations where it's difficult for them to communicate? you the fullness of the situation. Larissa Heise (19:51.415) Yeah. So that's a great question. think, yeah, that's, a lot of it is like from, this is more from my behavior analytics, analytic perspective. If I were gonna put a hat on me right now, sometimes I find myself like, being in both worlds, I find myself kind of like blending their approaches, but this is definitely more kind of like in that behavior analytic realm. Lola Dada-Olley (20:06.556) Mm Larissa Heise (20:23.166) There are lots of different ways, one, will say this, there's lots of different more technical things we could dive into and like talk about like how we evaluate that. But I don't want to like bog people down with that. What I will say is there's different levels of assessment and depending on the intensity, the complexity, I might choose different levels of assessment to ensure that the way I'm assessing and the depth of which I'm assessing is really capturing everything that I need to capture and understand. And like you said, there's different ways to, I assess, there's also different ways to intervene. And I think as you work with individuals, more and more there's a safety risk, also just what's gonna be the most effective for each person, So it's always individualized. It's always like, what's gonna kinda click for them, what's gonna make the most sense for them. But I will say that as we get into more and more extreme or unsafe behaviors, we do have to approach it in a more gradual and thoughtful way. Because if I'm working with an individual who's six foot two, 300 pounds, who doesn't have vocal communication, who has needs that they need to get met, there's serious risks to myself and to that individual depending on what the behaviors are, right? So I need to be very thoughtful about the interventions we're utilizing. And they do need to be gradual because you don't want to overwhelm that person to the point where they are feeling frustrated. The goal should not be to hit a 10. You know what I mean? I feel like the people within our fields who are more experienced with working with intensive behaviors, they understand that if we're doing things effectively the way we want, we won't hit a 10, right? Of course, we always prepare for emergency kind of situations, but if we're effectively supporting that person, we should be seeing positive change or supporting them at a level that they can handle and manage. Larissa Heise (22:40.309) And oftentimes when we're providing support, we have kind of a short term goal of like, what's going to help them right now and what's like a skill they can do right now. And like a long term goal that of course is going to like use that gradual approach. So I'll give you an example. Like if you have somebody that you work with that or that you know who even hearing the word no is an immediate trigger for like intensive challenging behaviors, unsafe behaviors, where there's a of safety risks going on. We might have an immediate plan of like, okay, maybe we say not right now because the word no is so hot, so triggering, right? But we do still wanna work on long -term of like helping that person. I'm not gonna say that nobody's ever gonna love the word no. But like at least. be able to respond differently or use different tools if that word comes up in conversation, right? So like that would be a long -term goal that we're gonna gradually work towards versus like, what do we need to do to support right now to make sure that they feel regulated? And I think that's the other, like to your earlier question of what kind of tricks people up. I think a lot of times when we're supporting these kinds of behaviors, people think about the right now. What can I do right now to help the situation? but they forget about the later of like, yeah, you're right. Right now is important, but like, if we just keep doing the right now thing, they're not like people aren't gonna learn the skills that they need to be successful later, right? And they get confused about like, how do we teach that in a way that's safe, in a way that's supportive, in a way that, you know, meets their needs and keeps everyone safe. Like that's, that can be tricky. Yeah. feel like I went a little bit on a tangent on that one. Lola Dada-Olley (24:32.572) So. No, So when you talk about things being tricky, can you tell us an example of how when a certain strategy was going well for a length of time until it no longer started being effective, how did you help that person? Larissa Heise (24:54.059) Yeah, Larissa Heise (24:58.635) Yeah, think, honestly, I can think of a few, a few times because I do think that like, I think that's an important question because that does happen because we're again, we're all human things change. things change. Like you're like, okay, like that's not working anywhere. you know, and some individuals, they like, yeah, I get what we're doing here. I don't like it. Like, like that's not, we're not going to do that anymore. Lola Dada-Olley (25:03.676) Yeah. Yeah. Larissa Heise (25:28.343) So I'm trying to think of a specific strategy. I'll think of something real, real like kind of like a simple intervention that we did, like nothing, nothing crazy. know, difficulty transitioning into school. Okay, the first five minutes of the day, as soon as you get in, you can have some free play time and then like kind of transition into activities, right? was gone, gone. You know, it was rocky at first. I was like, what's going on? always say people, people get confused when you change the rules on them. So they're like, I don't know. It's then, you know, kind of get used to it. Okay. It was working. It was going great. well, in this, in the situation I had, you know, they started, having the same toys at home that they had at school. This is a littler, not a little like an elementary, kid I was thinking of, so they didn't care anymore. That's a basic example. I will say there's other times where you're like, I've seen things work for like a year and we're like, what happened? Like what changed? So usually if something changes, I look at first of has there been anything like, let's look at the environment, like what are we missing something? Did something else change that we just weren't paying attention to? Like maybe we didn't notice it, but the individual noticed it because they're kind cute into that. And kind of look at that first and foremost. If we're like, really not sure what, we're not sure what changed. Sometimes we have to go back to the drawing board and say, okay, let's reassess what's going on here. Other times I will say of like, we miss something that happened, we just didn't think about it and maybe it wasn't. as noticeable to us, but it was very noticeable to that individual. We have to go back and account for that and say, hey, oops, like, you know what, we're going to have a special thing at school when you get in here versus like the same thing you have at home or like, you know, things like that. So I guess what it always comes back to, like, I expect that to happen sometimes. If it's happening frequently, then I think like I would evaluate, hey, are Larissa Heise (27:54.049) Are we missing the core need? Are we only meeting part of the core need? Sometimes people are only addressing part of the need. And so sometimes the other part, if, to think of a good example, if I want to do something because, like I want connection with another person and it's a sensory need, if I'm trying to teach a different skill and I don't hit on both of those things, again, people find a way to get their needs met. so sometimes if it's like happening frequently or rapidly, it's not working. might say, Hey, let's, we must be, we might be missing something. Let's really kind of think about this. But if it's like, Hey, this has been working for a while. More often than not, something has changed that we haven't caught on to. and if we miss it, then we might have to just evaluate, reevaluate from the beginning. That's definitely happened to, yep. We're all, we're all changing people. Right. So. Lola Dada-Olley (28:51.73) Yeah. So could you tell us a little bit about those use cases that made you want to go back to the drawing board? What did they have in common that made you think, OK, let's go back to the Genesis? I'm just curious. Larissa Heise (28:52.673) gonna... it might happen. Larissa Heise (29:08.525) Can you repeat your first part of your question? so sorry. Lola Dada-Olley (29:11.434) no worries. So along those lines, you said there were occasionally there'll be a use case where you now have to go back to the drawing board and kind of reevaluate. what do those maybe small -ish cluster of cases look like? What do they have in common that makes you think, OK, let's go back to the genesis and kind of figure out what was going on. Larissa Heise (29:26.178) Yeah. Larissa Heise (29:40.194) Yeah. A lot of the individuals where that is happening, I think there's usually a, there's a trend, there is a trend of like a couple of things that, that may be going on. One, the most common one is we strayed from the plan. I will say of like, and we just didn't realize it, like people, or they tried to do things, change things too quickly. So that one's usually something like as, as a professional, we're able to catch. Somewhat quickly, want to say. Other times, everybody's on point. Everybody's like, no, we are doing this. We're consistent. We loved the plan. We wish we could still do the plan. And a lot of times with those individuals, there's co -occurring needs that are often happening that we want to evaluate the whole person. is complex. There's different levels to it. when we go back to the drawing board, we look at. Lola Dada-Olley (30:38.226) very. Larissa Heise (30:42.999) How are they medically? Has anything medically changed that maybe they can't communicate with us? We get pretty detailed. I won't get it up, but like eating habits, you we were talking about sleep a little bit earlier, right? The sleep, bowel movements. I had an individual who didn't have vocal communication, had dental issues. that nobody knew about for some time until we were kind of going back to the drawing board and ticking off the boxes. Have you been to the dentist? Have you been to the your pediatrician? You know, have you gotten like, you know, and when we were kind of going back and checking through, yeah, he was having a lot of dental issues and in a lot of pain that he couldn't express and we were able to get that need supported and, you know, re -stabilizing. sometimes it's a matter of like, going back to the drawing board, yes, with behavioral intervention, but sometimes just like the whole person of like, let's really kind of evaluate everything going on and seeing what we might be missing. you know, sometimes families get disheartened, right? Because that can be frustrating, especially when you're trying to help your loved one, but at the same time, like... What I've seen family see was they learn from that too. So that next time, if there's a next time they're like, we're checking on that. Like we recognize this looks similar to that. Like it might be related to pain. We're going to get, you know, things figured out here. And then, you know, we, do better when we know about it, right? But like sometimes we have to start from the beginning. check through and say, what are we, what are we missing here? Lola Dada-Olley (32:38.962) For parents of neurodivergent children who may be struggling with things like transition, so moving from a preferred activity to something that's non -preferred or from one setting like school to another one like home, what strategies do you have them consider? Larissa Heise (33:01.869) Fair enough. I always qualify this. always say, depends on your kid's needs, what's going on, right? What the need is there because sometimes transitions can look different for different reasons, right? Like we can have the same behavior from one child, I already kind of touched on this, same behavior from one child to another and completely different need that might need to be met in those moments. So I always say like, Lola Dada-Olley (33:09.775) Mm Larissa Heise (33:31.389) know, when we chat about strategies or things, always kind of have to go back to that, like, what need is there? I would say there's always like some general strategies that I think can work for a lot of different kids or individuals. Because we do know that like transition and change can be like, just a difficult thing for a lot of autistic individuals, right? So I usually say like, prepping. having conversations about what to expect with those transitions. And there's some individuals where having too much prep can be stressful and having not enough. So again, depends on the needs of the person you're working with. But I think clear communication about what to expect. If they're able to vocally engage, having the conversations about is there anything that you're. Lola Dada-Olley (34:08.356) Yeah. Yeah. Yeah. Larissa Heise (34:25.579) not sure about or like that you're thinking about that would be helpful is visiting in advance or like, is that something that can be like if we're going back to school or if we're having big transitions, can we visit somewhere prior? I always tell families to like, don't be afraid to, especially if they're in a school setting or an educational setting to like help prepare the school team too. like, How do we have conversations with our teams to make sure that we can support the individual in any way we can? I think sometimes families aren't sure what to talk about in those meetings, but it's really just like, how can I help them prepare in those moments? But yeah, like obviously transitions me a lot. I'm thinking about school for some reason, but even just at home, just. you know, providing clear expectations of like what the transitions will look like or when they're going to occur. And like also just kind of giving alternatives or supports if that transition is difficult. Like what do we do if it becomes overwhelming? Like sometimes we're like, it's going to be successful. It's going to be great. This is what it's going to look like. I love it. I love the positivity. But sometimes we also got to say like, Hey, if this is a lot, this is also what we can do. Like this is what's gonna happen if we need a break or like this is what you can do if you need some time. Yeah. So. Lola Dada-Olley (35:55.782) Yep, life be life and, Because life be life -ing and you have to be ready for as much as you can be ready for, I totally agree. For people looking for a licensed professional who can either help them individually or help their loved one develop some of these customized Larissa Heise (36:11.253) Yeah. Yeah. Lola Dada-Olley (36:23.065) You know, we've talked very generally, obviously, but those looking for more customized strategies for their own unique situation, how would you suggest they get started? Larissa Heise (36:34.957) So this is a fun question. Larissa Heise (36:41.629) This answer is going to sound terrible, but it's real life. The first thing I usually tell people to do is like, or ask them is what insurance do you have? I know that sounds so silly, but like, and it sounds so like callous to start there sometimes, but like that is how I direct people where to start. Because if, if you have one type of insurance versus another, you're going to start different places. So what I usually say is dependent, like, Lola Dada-Olley (37:01.511) Yeah. Larissa Heise (37:09.995) regardless of your insurance type, you know, cause obviously we're chatting with a lot of people here. Usually I say, figure out what your insurance covers first and foremost. If you're like, I don't even know, like, Larissa, I don't even know what I need to even figure out what my insurance covers, which you know, fair. I usually tell people, start with a psychological evaluation. ask about that. Ask your insurance. you cover, cause those things can get pricey. And so I want to help people understand that like, If there's barriers to accessing those, I'd rather you know first thing than be surprised after you do them. Schools are also a resource too. If you're looking for in school supports versus outside supports, those are different. So I always tell people that school support is something you can access regardless of insurance. are things that are, there's different rules, different ways to navigate that. Lola Dada-Olley (38:02.15) Yeah. Larissa Heise (38:06.325) But if you're looking for outside of educational settings kind of support, let's start with your insurance. And also if you're like, I don't even know what to ask. I usually recommend a psychological evaluation only because if you don't know what you need, if you're not sure, they will look at that. They will make recommendations. Now, if you know, you're like, you know what? I don't need to do that. I want. I'm looking to get speech, I'm looking to get OT, I'm looking to get all those things. You're welcome to want to get, I say check insurance, but also like talk to your pediatrician or doctor to start if that's helpful. They might be able to give referrals. You can call your insurance company and say, hey, this is what I'm looking for. They can give you a list. And then a lot of states, like depending on where you're located, do you kind of have resources for autism specifically that can also help guide you and guide kind of like your journey because I'm sure a lot of people who may be listening, understand that it is a journey. And navigating the world of providers is not always easy. I'm a provider and I find it difficult sometimes, but you have to kind of start Lola Dada-Olley (39:23.623) Yeah. Absolutely. Larissa Heise (39:32.073) somewhere and a lot of insurance if you have like private insurance or commercial insurance they'll have some people who can help if you ask for them of like I want somebody who understands autism who can help me sometimes they're able to assign you somebody or if you you know if you have Medicaid you can go through your state and they often will have resource to help you navigate it too so I guess my takeaway is you gotta figure out your insurance which can be daunting But don't be afraid to talk to the people who you already do trust too, if you have a doctor and you have people you can go to and they will help you navigate through the system. And it isn't always easy, but... it also, if like that's what you need, or if that's what you feel like you or your family needs, then it's worth figuring out because I'm all about kind of the conversation we had earlier of like, at like you had mentioned advocacy, right? Like these are things that while they're frustrating, they can be frustrating. I want people to know or feel confident how to get their needs met. And even if it means learn how to call insurance and figure out all this. Lola Dada-Olley (40:46.254) Yeah, honestly. Honestly, and this is for... No, it's actually not, I know you said it sounds like a callous answer for our US -based listeners, it's not a callous answer because the insurance is a very, very interesting, complicated, frustrating maze that one has to deal with in order to get... Larissa Heise (40:46.303) I want people to feel like I know what to do. Yeah. I know that was, I was like. Lola Dada-Olley (41:15.354) services sometimes. I've heard of all types of situations. I've heard of parents or individuals literally not just moving to a new state, sometimes traveling to another country just to get some of the evaluations needed. So for US -based listeners who are using private insurance, that is absolutely the way to go. Because otherwise you will end up with an Larissa Heise (41:35.596) Yeah. Lola Dada-Olley (41:44.914) $10 ,000 bill that you didn't know was coming. That's what happened to me and my husband. That's in a previous episode. That's back in season one for those who are interested in learning that fun tale, navigating healthcare in a brand new state. So it's very, very true. If you're a US -based listener and you have private insurance, please call your insurance provider first. Larissa Heise (42:03.201) Yeah. Larissa Heise (42:08.257) Yes, yes. I wish I could, but that's literally what I have to start. Every time people are looking for services, like through our organization, that's the first question I have. And then I can best direct you of like how to contact and who to chat with and things like that. But I don't like when people are surprised. I'd rather them understand the barriers that they're about, like if there are barriers with their insurance, like I'd rather them know to start and then make decisions from there. Lola Dada-Olley (42:20.242) Yeah. Larissa Heise (42:37.355) rather than like you said, be surprised. don't want people. That is not my goal. And you know, there might be resources available. Like if your insurance doesn't cover, there could be. Yeah. Yeah. So that's my real life. Start with insurance. Lola Dada-Olley (42:40.188) Yep. Lola Dada-Olley (42:47.687) Depending on where you live. Absolutely. Lola Dada-Olley (42:58.742) with insurance. Larissa, thank you. Thank you for making time today. Much, much, much appreciated. Larissa Heise (43:08.695) Thank you so much for having me. Lola Dada-Olley (43:12.103) Be well. Lola Dada-Olley (43:17.094) Yeah, I learned from...…

Not Your Mama's Autism (NYMA)

1
Creating Cultures of Neuroinclusion: A Talk with Dr. Theresa Haskins 49:41

10 weeks temu49:41

49:41

Summary Dr. Theresa Haskins, a professor, researcher, consultant, corporate executive, mom, wife, and advocate, joins the podcast. She shares her journey as an advocate for her children and a self-advocate. Dr. Haskins discusses the diagnosis process for her children and the challenges they faced. She also talks about her experience studying educational psychology and getting her PhD in education. She emphasizes the importance of choice and autonomy in education and the need for inclusive and differentiated learning approaches. Neuroinclusion means creating environments that respect and accept differences in how individuals engage, communicate, and interact with each other. It involves allowing multiple realities and ways of being to coexist without judgment or the need to change others. To achieve neuroinclusion, it is important to start young by building cultures of inclusion in schools and teaching children to respect and value diversity. Additionally, workplaces should prioritize neuroinclusion by creating equitable opportunities for neurodivergent individuals and allowing all employees to be their authentic selves. Neuroinclusion benefits everyone by fostering authenticity and creating a more accepting and inclusive society. Keywords advocate, diagnosis, children, educational psychology, PhD, choice, autonomy, inclusive education, differentiated learning, neuroinclusion, differences, respect, acceptance, diversity, inclusion, communication, engagement, authenticity, workplace, education Tak eaways Dr. Theresa Haskins is an advocate for her children and a self-advocate. She shares her experience with the diagnosis process for her children and the challenges they faced. Studying educational psychology and getting her PhD in education taught her the importance of choice and autonomy in education. Dr. Haskins emphasizes the need for inclusive and differentiated learning approaches. Neuroinclusion means respecting and accepting differences in how individuals engage, communicate, and interact with each other. Starting young by building cultures of inclusion in schools is crucial for promoting neuroinclusion. Workplaces should prioritize neuroinclusion by creating equitable opportunities and allowing all employees to be their authentic selves. Neuroinclusion benefits everyone by fostering authenticity and creating a more accepting and inclusive society. Chapters 00:00 Introduction and Background 04:16 Discovering Giftedness 08:04 The Importance of Choice and Autonomy in Education 27:36 The Impact of Psychological Safety on Autistic Inclusion 32:20 Increasing Empathy for More Inclusive Classrooms and Workplaces 36:25 Corporations vs. Classrooms: The Inclusiveness Divide 41:29 The Human Nature of Dividing and the Need for Neuroinclusion 43:31 Defining Neuroinclusion: Acceptance and Respect for Differences 45:18 Unconscious Bias and the Importance of Neuroinclusion 47:58 Neuroinclusion in the Workplace: Authenticity and Equitable Opportunities TRANSCRIPT Lola (00:02) Hello, welcome. Welcome to the Not Your Mama's Autism podcast. I'm Lola Dada -Olley On the podcast today, we have within our midst, Dr. Theresa Haskins, a woman who wears many, many, many hats. Professor, researcher, consultant, corporate executive, mom, wife, advocate. Welcome. Welcome to the podcast today. Thank you. Theresa Haskins (00:35) Thanks for having me here. I think I'm in good company with a woman who wears many hats. Lola (00:41) Perhaps, perhaps. I guess it takes one to know one, and we're matching, so we're both wearing flip. Theresa Haskins (00:46) Yes, it does. And we matched, and this was not planned, everyone. We just looked fabulous in blue. Lola (00:50) It was, it was, it wasn't, it wasn't. You know, when you're in sync, you're, you're, you're, you're in sync. So background wise, we're kind of alluding to, we have known each other for years, in work circles, we have known ourselves for years. But I'm so interested in just learning more about the, all this multiple, this multiple side of, these multiple sides of you. So you are. Theresa Haskins (01:03) Mm -hmm. Lola (01:21) Where do we even start? You are both an advocate for your children as well as a self advocate yourself. So let's kind of start a little bit at the beginning, depending on what your answer to this is, which diagnosis came first? Theresa Haskins (01:42) Children. Lola (01:43) children. And tell us how you and your children were all ultimately diagnosed. Theresa Haskins (01:52) So it's an interesting thing because it actually does go back to my childhood. I have a son. I do have two sons, but that's not in my childhood. Let's go back and reframe that thought. I had a cousin with classic autism. And this is the early 80s and didn't really know what autism was. had a lot of the stereotypical traits because he had more of a classic profile. He was a larger young man, had some intellectual difficulties, but he would end up graduating from high school. But I just remember him at holidays and family gatherings and how he was different. My mom was a kind of a special education associate. So we always had a propensity in helping, with Special Olympics and those with IDD. And I was always exposed to the disability side of things. And so, when I was in high school, I remember helping other disabled individuals, whether they had neurodivergence or not, that wasn't really a thing. And I was part of the generation that if people did have learning differences, they went to things, we called it the van, right? So it was like, outside of the classroom. And so there was like a separation of things. I remember going to the van once, but then being sent back to the classroom. And it might be because I may have a profile more similar to my children, which would be twice exceptionalities. And so, you know, I would grow up and not always fit in and things got harder when I was more on my own and my parents were kind of off doing their things in high school. And so I would get into college, I would become a note taker for people with disabilities. I've always had this need to help others and really found joy in that. I didn't know I was going to be a mom. And I thought I knew what I would know what being a parent was, because I like helped raise my cousins. I was like a nanny at the age of 10. By the way, that would never happen today, but it was most certainly a thing back then. And I would end up really not having my first barn until I was in my late 20s and knew right away that he was different. I remember when he was just a little baby, he would just like kind of stare past me and my mom passed before I had children. So I'm a motherless mother and I'd read that book and I used to make the joke, he must be staring at mom because she's not here. She's like passed. Lola (04:38) Hmm... Yeah. Theresa Haskins (04:40) But it would Lola (04:41) Yeah. Theresa Haskins (04:41) be when he was coming up to nine months, one year where he wasn't waving and he wasn't, he wasn't babbling like other children do. And then when we were coming towards his, I'd say one and a half second year, he wasn't talking, but he could speak. So at the age of two, and then definitely by three, he knew his alphabet. He could count to a hundred. he could write in Wingdings. And I discovered that in the most interesting way. I was trying to teach him how to write the word frog and he was writing this alien language. And I remember calling my husband over going, my God, Brian, there's something wrong with him. And I was kind of upset and trying to work with the baby, my son, not the baby actually, but at the time he was and being like, Raiden, write it right. And he would grunt and kind of in his own way say, I am. And I'm like, Lola (05:13) Mmm. Yeah. Theresa Haskins (05:36) husband saw it and he took it to the computer and typed the word frog in Times New Roman and then changed it to Wingdings and it said frog in Wingdings. He learned how to write and read Wingdings. So you definitely have this precocious child and I remember going to the doctor saying, you know, could he be autistic? And she's like, I don't know. So I actually kind of had to push for him to even get the appointment to be diagnosed. They sent them for hearing checks first. They sent them for vision checks, pretty much ruling out any other physical issue before they'd even let us get near a psychiatrist. And then when we were doing the battery, a lot of the things that they're actually testing have more to do with intelligence than autism. And so by the end of it, they're like, well, he's so smart. I know he's smart, but he doesn't say mama or hello. He just counts and says random words that have no context. And so they diagnosed him with something called PDDNOS, which is Pervasive Developmental Disorder, not otherwise specified, which means we don't really know, but there's something that we can't explain. So. Lola (06:53) Lower. Theresa Haskins (07:00) you know, we would go through the gamut of speech therapy and all these other things. And then my husband and I would decide to have another baby. And the new baby would come and he would start to grow up and Braden still did not talk, even though he could say some words. And one day when the baby was getting to the Todd, I don't want to call it the toddler age, cause they start trying to walk around a year, right? They start getting in this stuff and the baby was climbing up and getting your brain's computer. And Braden was not happy and he was doing his grunt or whatever. And the baby was like insistent trying to pull up on that keyboard. And Braden said his first complete sentence, which was the win of the century. Mom, the baby's driving me nuts. And from that moment on, Braden's broke in complete sentences. And braque is the best therapy money couldn't buy. So Brock would continue to poke at his brother and they have are now like best friends. If anybody understands Braden, it's Brock and they have their own kind of inside jokes and things. So Braden is obviously he has autism, but he's also gifted. And I did a TED talk not too long ago about that experience, but Lola (08:04) That is awesome. Theresa Haskins (08:31) really long story short there, you know, his IQ is off the charts so much that in our state they stop the assessment after three days. They could have kept going. So we actually don't know how high his IQ could be because they were like, it's high enough for state standards, which was really close to 150. And wanted to put them in the kindergarten because his social skills are behind. So mom decided to go back to school, become an educational psychologist and leave homeschooled. We would learn when he Lola (08:59) get a PhD. Theresa Haskins (09:02) I got my doctorate eventually before a whole different set of reasons still related to him. I just, first it was like, I need to educate my kids. Like this is the thing that happens, parents and friends. You try to solve the problem in front of you at the time, not realizing that a whole new problem statement's going to come. So Braden is now I found out odd HD. So he has ADHD and autism and giftedness. He is that. little Venn diagram you see. He is the trifecta. And then Brock has ADHD and he's also gifted. So both of my kids started college by the age of 13. So it's a very, very different thing. And so going through the battery with the children, because you said what came first, things that you don't think a lot about until you experience it with your children. I have heard my entire life and I actually had a best friend that was, I think we were like eight that grabbed my face and said, what are you looking at when you're talking to people? And my husband has been saying it for years. Where are you looking? So eye contact has been a theme, meaning lack of it. And I even have job performance reviews that talk about my issues with eye contact and maintaining focus. By the way, I can hear everything you're saying without looking at you. I've had a lot of feedback regarding my hyperverbalism. It's really great being a public speaker though. I'm never short on words. And just, I never realized, you know, I think about like my childhood and I remember having like lots of friends or at least I thought I did. And then when my parents divorced and I was kind of left on my own, which is around the time Asperger's would be diagnosed, 12, 13. I remember they all just over, like they just all started like going away and I couldn't figure out why. And I would make new friends, but they never stayed for long. And being that I learned what I did about my children, I found out, my God. I get it now and it's no big deal. Of course I didn't have, the good news is I was never looking for self acceptance. It was just more of the strangeness of like, where did they go? And I just didn't really worry about it. Cause I've always been so goal oriented. I always had a project or something. So I was never like overly worried about not having the social life, but it's just weird to see how different it manifests. And you know, like the little one has the perfectionism anxiety that's the dhd that i have in. And so it's just interesting but my dad's dyslexic and so it's like a big neurodivergent family and. I think the trick is like finding where you fit and finding people that get you so i've had a i've like had bosses like people talk about masking. wasn't familiar with that term until I got like more active in this space, but I have been told that I mirror people. So like I had a boss that said, do you realize that when you talk to people, you start to like emulate their demeanor? And I go, yeah, because it makes them comfortable because I read an FBI study that said that's how you get closer to people. So, you know, there's just what's true. So there's this interesting thing of, you know, Lola (12:14) Mm -hmm. Yeah. Theresa Haskins (12:32) To me, masking is like saying, I'm going to put on this face and pretend to be this person. But I find that if people start talking quieter and they lean forward, then you might want to talk quietly and lean forward. But Lola (12:42) I'm sorry. Theresa Haskins (12:44) anyways, I had a boss that noticed that. And then my husband notices that if I talk to people from London too long, I start to adopt their dialect. So it's an interesting thing. And I would find out that that's called masking. But I always thought, When I read about it, like masking is like an intentional thing. And that's why I call it mirroring, because I don't even know I'm doing it. So I think that that's what I think is interesting about the neurodivergent population is that it doesn't like. Even when we talk about things that sound similar, how they manifest in those individuals may be very different. And because, you know, just going to the concept of masking, Braden does not mask. Even if I, you know, like I would say masking for him is remembering to say hello and how are you and to respond to people when he's being spoken to. But that's about as masking as he's going to get, right? And so, you know, I've read about this concept and I think it's really common in women, but I don't, I don't really. I mean, maybe we've been privileged enough that we could be odd and still be accepted. And in places where you can't be yourself, just don't stay. That's kind of been my rule in life. I had eight years under one horrible manager where it just wasn't working out. And I never allowed that to happen again. So I think you need to choose your environments wisely. Lola (14:25) So based on what you just said about choosing your environment, you chose to take your children out of public school and move them into a home school environment. And then at one point, yeah, then at one point you went back to school to study educational psychology and get your PhD in education. So what did studying those areas teach you about your kids? Theresa Haskins (14:38) Yeah, that was scary. Yeah. Lola (14:55) yourself and designing a curriculum with them in mind. Theresa Haskins (15:01) So what's interesting is, and so this is for all of you that aspire to be special educators. Don't do that. I have a reason. I have a reason. If you want to be an educator, be an educator. Be an educator that learns how to differentiate and support children. Be part of the change. So one of the things I learned in educational psychology, it's not because you shouldn't go into special education, because it is a field, but we need to do better. And if you're going to talk about inclusive education, then you need to become a general educator that knows how to support. Lola (15:19) Yes, please. Theresa Haskins (15:42) differentiated needs, which is what a special educator could do. And one of the, the reason why I dropped out of the special education program is the methodologies and approaches, at least in the state of Ohio that I would have to apply. I knew didn't work and I would not apply. And so I wanted to know how these things came to be and why they were, they were that way. And they're like, well, educational psychologists come up with those ideas. everything we do has to be evidence -based. Meaning if you have an approach, it needs to be researched, studied, validated, and replicated before it could be used in a school system, because they don't want to do any harm, even though some of these methods do harm. And so that's when I decided to become an educational psychologist. And what I learned through my education is that special education research and general education research are not intertwined. So general educators are not about self -directed differentiated learning, universal design. It's like a special topic for them. And special educators spend all their time learning about the human brain, how we learn, motivational theory. And you've got to ask yourself, why wouldn't every teacher be taught that? So one of the things that I spent a lot of time looking at was, unless you have an intellectual deficit, which is a completely different conversation. Autistic, ADHD, dyslexic, Tourette's, all of them have the propensity, they can learn. There's nothing wrong cognitively with their brain, okay? I don't like calling autism a cognitive difference because people, cognition, right, is in terms of how we think, but we actually find with autism, they have superior memory. So we can't say that they actually have a deficit in learning and cognition. And I have a book on here that says learning cognition with autism. And when I was reading it, you could tell that the population set was mostly focused on IDD. Well, autism isn't IDD. And so one of my first studies was in a second grade classroom with two autistic children that were in a general education environment that were underperforming in writing. And I believed it was the construct of the classroom, not their ability that was developing them because I got very intrigued by this concept of motivational theory. And one of the things that people don't realize about motivation is it's directional. So when people say people lack motivation, it's not true. They just lack motivation to do what you want them to do. I'm motivated to play my video game and not clean my room. Motivation only stops if activity stops. And even then I could argue that you're just motivated to stay in bed. So unless you're in a catatonic state, motivation is always happening, right? Are you motivated to get up and get a drink or are you not motivated to get up, right? And so if motivation is directional, then the question is why aren't these kids engaging, not do they lack an ability? Because they didn't have IDD issues. And so what I did is I created a choice construct and I was finding this worked well with my kids and any of you parents out there. Know that if you give your kids choices, they're more likely to cooperate. Everybody thinks kids love to go to the ice cream parlor because it's ice cream. But I don't think any of you actually really think about kids love to get ice cream because it's one of the few places they go and they get unlimited choices. Rarely do you take your child to get ice cream and say, you can only have chocolate in a cone. You usually say, hey, honey, what flavor would you like? Would you like that in a cup or a cone? Lola (19:21) Hmm. Hmm. you Theresa Haskins (19:31) I would want to go where I'm treated with some respect and autonomy too. So I took that same unrelated to education concept of choice and autonomy, which by the way, every toddler tries to exert and is denied. And I took it in the classroom and I told the teacher, I need consistent writing assignments. And for two weeks, you're going to deliver your writing assignments. Obviously the topics change, but the complexity of them couldn't shift. and I want you to deliver it and that's my control. And then for two weeks, you're going to do it my way. And my way was the kids get to sit where they want and they get to pick whatever color writing instrument and type of writing instrument they want. And I remember the teacher going, this is going to be chaos and this won't work. She goes, this is a stupid thing. I go, it's a choice. And we're giving them choices. There's rules. They can't talk to their friends. They have to engage with the writing assignment. General Ed. and autistic students all together. And you do that for two weeks. And then it's an ABA study. Two weeks, we go back to your way. So we did that. And I interviewed the teacher before and I interviewed the teacher after and she admitted at the beginning, she's like, this isn't going to work. This is a waste of time, but we'll do it. We saw motivation to write for all students increased by 49%. Latency to write decreased. everybody was more engaged and what she came back to say, she's like, I would have never thought that worked. I go, but these are second graders. They're told where to stand. They're told where to sit. You gave them some agency. And so one of the most interesting things is when people hear that like my focus is on autism and I homeschooled my kids, everybody's looking for this disability minded autism specific construct. But what I found is that when we think somebody has autism or a disability, the first thing we do is start to control the situation and we take away their agency and sense of autonomy. And giving people choice and autonomy doesn't mean it's a free for all, but you create the sense of cooperation at a very early age. So it's not that you're, you know, it's not that. they're not gonna do their schoolwork or they're not gonna clean the room, but you kind of, it's a negotiation. We can clean the room with music or we can clean the room with a drum or you can clean the room in silence. Like you're cleaning the room, but you get to choose your environment. And these seemingly simple things at a very early age made a big difference. And if any of you have ever had to negotiate with like a daughter who wants to wear a tutu to a to an event where you didn't want her to wear a tutu, right? You're usually able to come up with some sort of compromise where everybody's happy. And by the way, why can't they wear a tutu? Like really. So, you know, know your battles. The other thing that really helped with gifted students is a lot of the research shows that gifted students get bored. I can relate to this. And so if you get bored, you start acting out or you actually disengage with learning. And one of the worst things, so most gifted programs aren't really gifted students. They're just very bright students, which is fine. Meaning IQ is between like 115 and 127. And that's good. But what happens with these bright students is that we give them extra work. And then if you get somebody over 127, they're already bored. by years. Busy work is not brain engaging, problem solving and allowing people to explore their issues. And so there's a guy named Sagatimitra. And he did the hole in the wall experiments in India. If you've ever saw Slumdog Millionaire, that movie was kind of based on this concept of if you give children access to technology and education, they will self -direct. And so a lot of people think that that means that Children like had the propensity to just go off and learn and do on their own. There's structure that has to happen there. But if you think of anything you've loved in your life or a problem you needed to solve, how much digging did you do before you did it? So if you were planning your trip to Barcelona or if you wanted to be a ballerina, you started reading books and you started watching videos. So if you, like I had the luxury because we homeschooled the boys, It's not because they didn't need, well, they were already reading and writing, but if they still had to learn math and they still had to learn history and there's all these things, but if they're in love with space this week, cause you know, it changes, but if they're in love with space this way, there's a lot of history around space. There's a lot of science around space. And if you can curate learning in a way that's interesting, Lola (24:29) Mm -hmm. Theresa Haskins (24:42) you could take that hyper -focused mind that we hear about neurodivergence have all the time and allow it to be the bridge to get them to learn all the things that we try to force feed in very structured routine ways in a school system. And so that's what I learned, which is really surprising to people is that you need to be willing to break out of your school of thought. So when I was doing my research for educational psychology, I was pulling from special ed, I was pulling from psychology, I pulled from OD and business and my professors were like, nobody does that. I'm like, I'm doing it because we're all informing each other. And what's sad is that when I got into my doctoral program, you know, there were people in my program that were like, well, this is meant for, this is, you know. pedagogy, and this is all directed for people in education and I'm in business. And I'm like, if you can't see the correlation between managers and teachers and employees and students, you're missing the game. Because first of all, you're diminishing the autonomy of students if you think that they should have less agency. And I know plenty of managers that treat their employees like children. So if you take leadership theory and education, androgogy and pedagogy, Lola (25:39) Mmm. Mmm. Theresa Haskins (25:59) you start to see themes and those themes start to show practices that if we did like the best leadership practices are the best education practices, right? And, and you know, when we think about having workplaces with proper constructs, adequate education, relevant to application, well, if a teacher could make learning relevant and give them the right constructs and individualize the support, you see, you hearing the themes. And so I was able to go into a second grade classroom and then I was able to go into corporate offices and employ the exact same strategies and they always work. But what is interesting about it is they don't just work for the typical set. These are strategies that will take your disengaged, apathetic and demotivated people and will flip it. And it's all because I have found, we do it to disabled people. Lola (26:33) and remember. Theresa Haskins (26:55) We also do it to underperforming employees. The first thing we do when people don't do what we want them to do or worse, we start to think they can't. We micromanage. Well, micromanage is no different than helicopter parenting. So when you start to see this, there are patterns and they will address issues in all areas of life. We use different terms, but a helicopter parent is a micromanage. Lola (27:25) So in these areas of research that you focus on, what do you love most about your research? Theresa Haskins (27:36) What I love about the research the most is the people that I, the participants that bring the hypothesis to life. So it's one thing for me to see this pattern, right? I see like, obviously I'm seeing these dissonant patterns. I'm stealing from everything and somebody's like, but you haven't validated that. So. Lola (27:54) Yeah. Theresa Haskins (28:01) There was research that was done in psychological safety in the constructs, the 10 constructs that are required out of Harvard. And I was reading my dissertation the other day and we had the same findings. So now I have a hypothesis that I think would be pretty easy to test to say psychological workplaces would result in more autistic inclusive workplaces because the constructs are the same except for one, directive leadership. Autistic people need you to say what you mean, mean what you say, like they need direct. communication. But well, in my study group level two. So what I love, I love learning. I love testing the hypothesis. I love discovering something I didn't see. One of the things in in one of my studies is I was so convinced that education was the solution in terms of why some of these managers were so great at retaining autistic employees, because guys, you can hire autistic people, but the research over the last 15 years showed that it wasn't not saying that hiring isn't a barrier, but the research actually shows the retention is abysmal. So even if they get a job, they're not there after a year. So if you hire them and they leave, you haven't actually solved anything. And I was pretty convinced because I'm an educator at heart that it was like Training of these managers is what made them great to be able to help these autistic adults retain employments at like two, three, five years later. It was a great finding and also a bit of a troubling finding that training was not the factor because 50 % of the managers that were in my study had no training or coaching support. Lola (29:47) Mm. Theresa Haskins (29:57) before bringing in those autistic people. And 50 % did. The common denominator across all of them is those that had training felt it relaxed them in being prepared. And those without training had a little more anxiety going into it. So that was the only thing training did was to make some of them feel more confident than others. But the reason why they were all successful is because they were competent, adaptive leaders. Adaptive leadership was their common trait. And one of my subjects was honest. He goes, if I had an autistic employee when I was 20, he goes, I would have been horrible at it. He goes, I would have, he goes, things had to be done my way or the highway. I was rigid and I was hard on employees. And I go, what made you change? Cause he wasn't one of the people that had had training, but he, you know, had like five different autistic employees on his team and two had been there for over five years. And I go, what changed? He goes, I had children. Cause now he's like in his 50s. He goes, I had children. He goes, and I had three children. And what I learned in my life is that what worked for the first didn't work for the second. And as they got older, he goes, I realized I knew less and I needed to listen more. he goes, and I found that that worked in the workplace. So, you know, people with high EQ and empathy to reflect on not what I want, but what do people need? That's what all these managers had in common. They were like, you know, so I'm like, would you make that accommodation? They're like, why not? So these are going to be the managers that are more likely to work with their employees to find the solution, which leads you to the need for psychological safety, because if you don't have safety, Lola (31:27) No. Theresa Haskins (31:52) you can't have the conversations. And if you have a rigid micromanager, you're not going to get that flexibility. So I don't want to believe it's a personality type. I want to believe people can be taught, but there did seem to be a disposition. And that surprised me. And it was exciting and scary at the same time, because if it's a disposition, then we have a lot more work to do. Lola (32:16) So to that point, we have a lot more work to do. If money was no object, if money was no object, you are well resourced, what would that work look like to increase empathy in order to get more inclusive classrooms and workplaces? Theresa Haskins (32:20) Yes. So I think it's a multi -phased approach. I was actually talking to somebody, I think today about this, I don't know. We need to start at the beginning. And to start at the beginning, I mean, we need to work on the new generation while we work on the current generation. Because one of the things I find is that when I look at schools, especially high school, We still have cliques and we still have bullying and we still have exclusion, right? I mean, think of the Breakfast Club. Every single one of us can watch that movie. I know it's old, so I am dating myself, but we can be like, they're the jocks and the preps. And the fact that we can categorize people so quickly means that we are not as open minded as we want to be. And if you want to really change the future, you need to change how people think and act with each other. And that starts young. So if you want to eradicate bias and discrimination, then you increase exposure and you work on building cultures of inclusion early. You make inclusion the standard and you work as parents, as educators to get them to be the type of people we expect our employees and managers to be when they become adults. If you have children today that are in a school where there is the in and the out crowd and the popular and the nerd crowd or whatever they're called this week because the names are always changing. What magic dust do you think is going to happen between that 17 year old and the 22 year old in the office? So if you behave that way here, you will carry that here. And then you make the work of Lola and I that much harder, because now we have to try to educate adults, or dogs learning new tricks, start young, right? So I have children that, you know, they're accepting of everything because that's how Dr. Mom raised them. And they weren't in normal environments to learn anything outside of what I wanted them. learn about life. And it wasn't even until the George Floyd thing that they really understood the issues with race because, well, it wasn't an issue. Because we don't make right, you know, they have aunts and they have uncles and they have all these different things. And then I had to explain to them, you know, not everybody celebrates gay marriages and they have uncles that are gay. And, you know, so there's just all these things that go on. And My first degree is in sociology, by the way. And I didn't mean for my family to be a sociological experiment, but the truth is, is the cultures and the constructs and terms and the words you choose to use or omit, meaning my kids didn't have the words for things because they weren't taught them. Now they know what the words are, but they still don't use them because it wasn't part of their vernacular. But it's the whole idea that we create social constructs. And I can't control every family's life, but you can control what happens in schools. And the reason why I'm picking on schools is because corporate America does this better. The reason why corporations are more inclusive and more tolerant is because they demand it. Like if you don't behave and accept that corporate culture, you're going to get written up and you're probably going to end up getting fired. So. Lola (36:22) So you think corporate environments are more inclusive than classrooms? Theresa Haskins (36:24) Corporations are more inclusive. or absolute. I'm not saying they're more diverse, I'm saying they're more inclusive. If you're at work, you're not allowed to exclude somebody because of race, religion, creed, or anything. If you're in the work team, you're on the work team, but schools do it all the time, every day on the playground. So, right, what would happen if we were educating students like we do at work about creating cultures of inclusion? Where's the culture of inclusion class for young people? Cultures of respect. So, and why do we have to teach people who are 30 to do that? They should come in with those skills. So if I had all the money in the world. Puppies learn better than old dogs. So start with them while they're young. If we miss that boat, that's when choosing workplaces and cultures becomes really important. One of the things in the neurodiversity movement and any disability movement is human rights, right? Like everybody should be treated with dignity and respect and human rights. I'm with you. but we don't live in the future state. So that means that you should have those rights and people should respect you. But the reason why we're advocating is because there's obviously a gap and there's a problem. And so living in the current state that doesn't always respect and doesn't always have your best intentions, you know, they're not always there. Living in transition is very hard. And, you know, as an OD change manager, you know, that's what I can tell you is transition is the most chaotic time. And so we're there, there are people. And for those of you that are listening, well, it just was on a podcast with me not too long ago. One of the things that we were talking about is that the transition of generations and like what autism used to be thought of. And then we were part of the person first movement. Don't get mad everybody because people didn't see people with autism as people. That's why that happened. And now we're at where we can have identity first language because we have a whole generation of people that had more support, had more acceptance. I didn't say perfect, but more than previous generations to where they feel better about that identity and can own it. And you should be able to do that. We also have more resources, protection and knowledge. We just got out of Neurodiversity Month and Autism Acceptance Month and there was something going around where somebody said we have to get past awareness and we need to go to acceptance and enablement. Well, I don't like enablement because I feel like that's implying we have to give people power and I feel like we already have power, but I don't think we're past awareness. I think social media gives you the illusion. that more people get it than they do. And I know this because when I start programs with faculty members and teachers who you would think would be more aware of this space, and I say, tell me what you know about neurodiversity. I cannot tell me how many of these programs, and I don't even want to share the percentage of people that say, no, that's why I'm here. I want to know what it is. So I think we as a community need to be aware that we are 15 % ish of the world's population. Lola (39:40) Mm -hmm. Theresa Haskins (40:09) which means there is 85 % that is not in this club. And they're the one, they're the majority. So that's why we have minorities, majorities, they are the majority. And the world is designed with them in mind because most people design for themselves. So if you look at Lola and Teresa, hi Lola, our lives are designed with our families in mind. And the way I operate may not work for you, but that's how I designed my life. So. Lola (40:29) No. Theresa Haskins (40:39) I think magic wand, we start young. We start young and you find the pockets where we see more adaptive, empathetic and less toxicity because they're more ready to make those changes. So those are, those are your two groups and like little ripples in the water over time, they'll grow. Let's start. My kids are better than me, that's how I know. Like, I just see how they interact with humans. Lola (41:04) Alright. Theresa Haskins (41:12) It's completely different. Lola (41:12) I think for most kids, yeah, I agree. I think for most kids, for most younger people, they don't come out of wounds not being inclusive. It's like an almost like a natural, you see little kids and when they do start to notice differences, it doesn't tend to be in an insulting way. until an adult introduces that to them. Theresa Haskins (41:45) Right. Like they can see the world's variety. No different. Like we can see a box of colored crayons. But the question is, do you have a value assigned to the orange crayon versus the blue crayon? No. So when I tried to tell it's not because, you know, I don't like that word color blind or whatever. That's not it. It's have you assigned a value to a blonde or a brunette? Some people do. Lola (42:07) Yeah, I don't, I, yeah. Theresa Haskins (42:14) Other people don't, they just see it's a different hair color, it's hair. And that's what I'm talking about, guys. Like we can physically see differences and we can see blind and that isn't the difference. The difference is does that matter? When you see that person, do you think that they're less capable than another? And that's something you can teach. Or more importantly, ensure doesn't happen to be taught. Like I think, like you said Lola, if you let kids to just I think, I think, well, I do think kids learn some things from society, I do, but I am a little Lord of the Flies that it is a bit of human nature. You could put a bunch of women that look just like me with my hair in the same blue shirt and within six months, they'll find a way to separate themselves. Like there's something about the human condition. Lola (42:57) Yeah. differentiate. Theresa Haskins (43:16) that we feel the need to divide. And so in some ways we have to like teach ourselves to act against our human nature of. Lola (43:26) Both can be true depending on the circumstances. Definitely a yes and. It's true. So with this in mind, what does neuroinclusion mean to you? Theresa Haskins (43:30) Yeah. Yes, and. So neuroinclusion means that in any environment, we have the space for differences in terms of how we engage, how we communicate. how we just interact amongst each other with acceptance and grace. Because the truth is not every person, like there's still personalities, right? Like we're not always gonna like everybody and we're not gonna always get along, but just to respect that somebody else's way of being or engaging with the world, as long as they're not harming others, is valid. And I always like to say, and people are like, I get that. And I'm like, no, you don't. Because I just saw, you know, a Twitter thread where people were arguing whether or not pineapple should be on pizza. And if you actually have a strong position on that, then you're not inclusive minded because no one's saying you have to eat it. And why do you feel compelled to tell somebody else how to live their life? There's no harm. for somebody putting pineapple on pizza, if that's what they should desire. And so one of the first things we talk about, when we think about unconscious bias and people always go straight to like the big things like racism and gender discrimination, easy. You need to know the grandma you're bringing to work. You need to know your grandma and you need to know the construct of what you're bringing. And there are things you care about and there's things you don't. And so, you know, Some people don't care how towels are folded. Other people will get in a long argument that they should be folded in squares versus rectangles versus rolling. Teresa would say focus on the objective. Clean towels, put away. Don't care how they're shaped, right? So neurodiversity is there's more than one way to fold a towel. Let's focus on the objective. Clean, folded in some formation, put away. That's neuroinclusion. We live in a society that wants to fight which way the toilet paper should be hung on a spindle. So if you are rigid minded, you're not inclusive because inclusive means that multiple realities and ways of being and preferences, and by the way, autism is not a preference, it's just a neurological difference in wiring, can coexist. And I can respect that you roll towels and... I fold towels and we can coexist together, that they're both valid ways of being. And that's how I know most people aren't ready. So people who can actually say, I like instructions verbally and you need them written down. I can do that. That's neuro inclusion. A lot of people talk about like respecting diversity of thought. I want you to be able to respect like some pretty basic stuff. Like I need post -it notes all over my desk and you don't. This looks like a mess to you, but this is organized for me. Is it harming you? So neuroinclusion is allowing differences to actually exist in a way that we respect them, not judging them, not trying to change people to our ways. And that I think is a lot harder. And so, you know, next time you're loading the dishwasher and you feel compelled to correct your spouse because they have the plates turned the wrong way, you, hey. Is it really gonna matter? I believe the jet spins all the way around. My husband, I do that all the time. He doesn't like high load the dishwasher and I don't like the way he puts dishes away. So we've divided and conquered. I put them away and he, but you have to figure out how to coexist. But I just think that neuro inclusion is respect of differences, truly respecting those differences, not tolerating that they might exist, but I'm gonna try to change your way of being. And for those of you that are very excited about like autism employment initiatives, not to go here, but I'm going here. You know, be very mindful that they're really giving you an equitable opportunity for a job that they are not asking to do any more than a neurotypical would have to do to get the same job and that they aren't trying to ask you to change who you are to fit in. That is not a neuro inclusive company. So Those are the things that I feel very strongly about. If you ever are asked to change who you are, they may not be as neuro -inclusive. And by the way, neurotypical friends, you're asked to change all the time too, and we see you. And neuro -inclusion helps you be your authentic self as well. Because I think sometimes, typicals don't realize that if you create a neurodivergent friendly workplace, you just created a more authentic workplace for everybody. Lola (49:00) Thank you. Thank you. It's a wonderful way to end. Come on in, the water's fine. Theresa Haskins (49:03) Come to our side. The water's warm and we like are quirky and or we're not. I mean, and that's just what's so great about this space. The spectrum is amazing and it can be heartbreaking. It can be exhilarating and everything in between. I think it's a... I think it's healthy to get past your tiny circle and get to know the world. Thank you.…

Not Your Mama's Autism (NYMA)

1
Serving Families in Crisis: A Conversation with Breanna Kelly-Higgs LCSW, BCBA 46:54

14 weeks temu46:54

46:54

Summary Breanna Kelly, a licensed social worker and BCBA, shares her journey into the field of autism and her passion for supporting individuals with co-occurring conditions. She emphasizes the importance of understanding and acknowledging the experiences and needs of individuals with disabilities, as well as the significance of cultural competence in providing effective care. Breanna discusses the challenges within the medical system and the need for collaboration and holistic approaches to support individuals with autism and mental health needs. She also highlights the importance of caregiver training and empowerment. Overall, Breanna advocates for systemic changes and increased resources to improve the lives of individuals with autism and co-occurring conditions. Takeaways Understanding and acknowledging the experiences and needs of individuals with disabilities is crucial in providing effective care. Cultural competence and relevance are important in supporting individuals from diverse backgrounds. The medical system needs reform to better support individuals with co-occurring conditions. Caregiver training and empowerment are essential in helping families navigate the challenges of raising a child with autism. Collaboration and holistic approaches are needed to provide comprehensive care for individuals with autism and mental health needs. Increased resources and systemic changes are necessary to improve the lives of individuals with autism and co-occurring conditions. Chapters 00:00 Introduction and Background 02:01 Personal Connection and Early Experiences 08:49 Challenges within the Medical System 12:02 Cultural Competence and Trauma-Informed Care 19:00 Empowering Caregivers through Training 23:33 Meeting Caregivers Where They Are 30:16 Supporting Families and Building Relationships 34:05 Reforming the Medical System 41:38 Connecting with Others and Finding Resources Transcript Lola Dada-Olley (00:02) Brianna Kelly, thank you. Thank you so much for visiting us today on the Not Your Mama's Autism Podcast. Breanna (00:11) Thank you for having me. I'm excited. Lola Dada-Olley (00:16) Me too, me too. I just know you're going to drop the nuggets. The nuggets shall have nuggets. So with that in mind, let's learn a little bit more about you. So you are a true multi -hyphenate. You are a licensed social worker. You're a BCBA. Those not familiar with the term, board certified behavior analyst, and the owner in your spare time of synergy behavioral consulting. Synergy behavioral consulting. But before we get to all these wonderful things, like what you're currently doing now, let's start, let's go back a little bit. Let's start from the beginning. What made you enter this field? Like, do you have a personal connection? Breanna (00:46) Yeah. So it goes back to the early 2000s. And so I was in high school and a freshman in high school actually, and I got invited over to this party that this Christian club was having at my school. And it was at an attached school, which I now know was an alternative school. And it had kids with severely profound, severe and profound disabilities, quote unquote behaviors. There were pregnant girls. at that time, this was scary to me because we would only see these individuals like in between classes. And I went over there and the cha -cha slide, I think was out around that time. And we had the best time ever. Like doing the cha -cha slide, doing all the dances. And I will never forget, cause I was so fearful going over there. Like I just, didn't, I didn't know what to expect. wow, these people are just like me. And it was the bond within the cha -cha slides and all the dances. I was like, these people are just like me. Why was I scared? And that was the catalyst for me. And so I then joined an organization called Best Buddies, which is an international organization that partners at all levels, middle school, high school, college. individuals with intellectual disabilities with peers and we do all these activities. And so I joined that organization. I did that all through high school, went to college. didn't have a chat where we had a chapter, but it wasn't active and I lived it. I was like a college nonprofit person. had, we partnered with a nearby school. And now I think about it. I don't know if we have a school here like that, It was specifically, I think, like kindergarten through 12th grade of kids, disabled kids. They had a post -secondary. Yeah, Tampa. I'm from Tampa. I went to school at Tallahassee. So I was, you know, small college town and I was like, this is what I want to do. Like I woke up every day. I mean, I was in college. I did the school thing, but this was my Lola Dada-Olley (03:03) Where did you grow up? You live in Georgia now, right? Okay, Tampa, Breanna (03:24) So I wanted to be a doctor and like halfway through I was like, this is not what I wanna do. I wanna support these individuals and that led me to social work. And in college are really cool. We had a cool assignment. So this is my personal connection. We had to interview like an elder. I interviewed my great grandmother, my grandmother's mother and learned that my great uncle, And back then they had a lot of kids. They had a lot of kids. And was the whole that she raised them by herself. And she had a set of twins. And my Uncle Kenny has cerebral palsy. He probably would have been diagnosed with lots of other things now. He was taken from her. So the state tricked her into signing over her rights. And he was put in an institution. So this was 50s maybe. And she told me how they stole him back. And when I heard this story, I was like, okay, God, this is what you want me to do. This is why I'm here. And so she talks about him being in the floor and feces and they had to break him out and she had to fight. There was legal fights. And I just knew, I was like, this is what I'm supposed to be doing. So that led to social work. Yeah, so that's kind of the origin story. And I just keep getting these signs that I'm where I'm supposed to be, if that makes sense. Yeah, and now I have lots of personal connections, family members who are autistic or have different disabilities. My mother had a pretty, who passed away about 10 years ago, profound medical disability as well. And so it's kind of Lola Dada-Olley (04:58) Absolutely. Breanna (05:17) been where I Lola Dada-Olley (05:23) Wow, that story about you're literally your elders. It's the generational story that you have. Breanna (05:34) Mm -hmm. And it keeps coming up. So that's how I know it's not, you know, it wasn't a choice. I don't think I have a choice. I'm in a transition phase right now, but I know where I will be. I just don't know what it'll look like. So we'll see. I'm excited to see what's next. Lola Dada-Olley (05:54) Yeah, put a pin in that because that's very intriguing. Let's kind of walk through. So you have a graduate degree. And so when you were studying your graduate and your graduate program, what were you focused on? What was your specialization? And is it at all linked to what your focus is Breanna (05:57) Yeah. Yeah, so I came to Georgia specifically for macro based social work. So systems levels change, organizational nonprofit, and that was as a result of the work I did with that organization in college. So I intended to be doing that nonprofit work. Like that's what I thought I would be doing. And then I just ended up in different unique spaces. I'm a graduate of the LEND program. which is leadership, education, and neural developmental disabilities training program. And so that totally shifted my perspective. And it's an interdisciplinary cohort. Your colleagues are professionals. They're people with lived experience. That changed my trajectory. And then I started working for the university. And so I got to do all this traveling and training, and I loved that. And then transition to crisis services, which I never thought I never thought I would be there, but we were serving people in the most vulnerable spaces, like for someone to have to call for emergency help or, you know, to be at a point where they can't support their loved one. And so that kind of shaped that for me. And it's not something that I thought I would be doing, but being in those spaces got me to understand some of the challenges of our systems. Lola Dada-Olley (07:40) So when you say crisis intervention, for those who may not be familiar, what do you mean by crisis intervention? Breanna (07:47) So in our state, in every state it's different. So if someone is maybe having a psychiatric crisis or behavioral crisis to where their behavior has put them at danger, they put someone else in danger, they may be eloped, they're experiencing psychosis, any type of presentation in which they are unsafe, they can call 911 or they can call the specialized mobile crisis team. And so we would go out and assess, make recommendations. Some individuals will be removed from the home and we would support them in crisis homes. So this is for folks with those really high acuity needs. it became, you know, was quite interesting at times. Always exciting things, but families needed that level of support and they weren't always comfortable calling first responders. And so we essentially were first responders for some of those individuals. Lola Dada-Olley (08:49) What did that experience teach Breanna (08:52) Well, I think my brain is forever changed as a result of being in that space and working in psychiatric hospitals. I'm very hyper vigilant now. I'm very empathetic. I'm always checking the scene out. But it taught me a lot about the lack of services in our state. It taught me a lot about what it looks like when families are and when they have nothing else and when they weren't given support. It taught me a lot about how important it is to teach skills early on and to accept people early on and to get them access to their community early on because a lot of the folks that we saw were, you know, that teenage age where it's like, it's cute anymore and I can't manage it or adults. Lola Dada-Olley (09:47) Yeah. Breanna (09:49) who, know, quite honestly, they weren't given self autonomy and they're using these distress behaviors to communicate their wants and needs. Or, you know, those folks with the co -occurring mental health and developmental disabilities that we don't know, you know, we don't adequately support, they're just kind of getting bounced around and hospitalized and medicated. And so I just to look at how the sausage was made, unfortunately. And so it really shapes how I support families now because I've seen this totally other end of it and I try to prevent people from getting there. Lola Dada-Olley (10:32) from getting there, So you know how the movie ends, in other words. So you're trying to do your best to prevent where you can. Breanna (10:42) Yeah, it's very burdensome to understand the system so intimately. It's painful. Even when tell parents, when parents do all the best things, or caregivers do all the best things, and you're like, hey, when they become an adult, you're going to hit that cliff, right? You're going to hit that cliff. So let's figure out how to do it with the least amount of damage as So Lola Dada-Olley (11:10) So just to level set for those who may not have heard the term the cliff, I first heard the term the cliff from my son's child psychologist. And it refers to the lack of services the older an individual with disabilities gets. How, just like you said, Breanna, like the way our society is set When someone's no longer cute, when they've outgrown, know, when that preteen teenager age comes, the resources start to dwindle and it becomes less and less and less. And it leaves families more and more isolated. So that leads me to you are also well versed in trauma informed care. What is that exactly? Breanna (12:02) Yeah, so it's, I like to put it in simplest terms because there's a lot of discussion around this right now. But for me, it's just simply understanding and acknowledging that people have had learning histories and experiences and some may not be ideals, some may be aversive and that those experiences shape how they navigate the world. And so as I'm training, other colleagues or professionals, sometimes I like to reframe it and tell them to ask not what did you do, but what happened to you. Because a lot of times when we're looking at something, we're trained to look at it from a deficit model or a symptomatic perspective. I tell people to be profoundly curious about that person's history. about their learning experience and they may not be able to tell us and we may not ever be able to find out but let's kind of support them in a way and so we are not making it worse and that we also acknowledge that what we're seeing may be a result of something else and maybe we need to create a space so they feel safe to be who they Lola Dada-Olley (13:18) So you going beyond the behavior like this, you sit at the intersection of social work and applied behavior analysis. How do you think that helps shape your practice and helps shape what you do Breanna (13:38) So social work is my lens, right? And not only just social work, but a Black African -centered social work perspective. And I think that's so important because we had to unlearn a lot of stuff in school as well. And I'm a proud member of the National Association of Black Social Workers. And I think they grew me up professionally and as a young adult. And so really centering African -centered values, autonomy, cooperative economics. I think that's the lens in which I look at the world. And so applied behavior analysis is kind of a specialty, a specialty, I guess, set of skills that I think can be helpful. But I always kind of fall back on that humanistic approach that social work gives me. And it can be challenging because ABA does not have, we're getting a lot of pushback right now. and meaningfully so, rightfully so on some of it. But I also at times feel like an outcast in ABA because I am the one who is coming from this kind of comprehensive ecological perspective and we are not historically taught that. So I'm having to carve out spaces and navigate sometimes conversations with colleagues who don't necessarily agree with that. wider lens, I guess. But we're making it work, I guess. Lola Dada-Olley (15:13) Hmm. That was loaded. Let's dig deeper. Let's dig deeper. You touched upon what is a buzzword to some, what is an integral part of their practice for others. What is culturally competent care and what does that mean to Breanna (15:35) So I like to think about kind of cultural relevance, because I don't ever think we can become competent and that's contextual. When I think about cultural relevance is how is it relevant or socially meaningful to whoever you're supporting. And that can change. That can change based on what region you live in and what your background is. And so having the desire. in the curiosity to try to pair whatever you're doing with whatever this person's need is, whether that's, you know, disability culture or Black culture, which is not monolithic or regional. So that's kind of how I think about it, is how is it relevant to those who you're serving? I don't ever think we can become competent. And I think I specifically focus on culturally appropriate services for Black and individuals of African descent because it oftentimes is not considered in intervention spaces, in the medical space. So I find myself being an advocate for that in lots of different ways. Lola Dada-Olley (16:51) For those not familiar with culturally competent care, could you provide some examples of a way upon which you would approach the practice differently when you actually take into account the wholeness, the fullness of the person who you're interacting Breanna (17:11) So you behind me, you see kind of my books that I keep on the wall and making sure that the folks that I serve see reflections of themselves and whatever materials I'm serving, I'm using to support them. I also think regardless of background is giving up that positional power of being the authority. And so normally when I start working with a family you're the expert. I have a certain set of skills. You're the expert. So really starting to pour into them, encourage them, build their confidence, because they likely have met. I know what the system does, right? So you've met other people who probably have not done this for you before. And so I'm here to support you. What do we need this to look like? And there can be times when we disagree. And we will just have to figure out what it looks like. And what's important to you in terms of whatever our goal is? What's important to you? How do we make this meaningful for you? What would motivate you? I think those are all really important things. Honoring people's language and their dialect and not trying to teach them things that are not part of their community. So when I was working recently with some young teens, young autistic teens, and so I support my staff in talking to them in street language, because they're gonna hear it at school. And so when you talk about social skills training, right, air quotes, their peers are gonna be saying different things. And so we use that language with them so that they've heard it before. really speaking to a family's fears about approaching the system. And so I enjoy working with particularly black caregivers or couples and acknowledging that they are fearful. And here's why you are probably fearful. And here's the reasons why you probably should be. And here are some examples of what we're going to do. to maybe mitigate some of these concerns that you have. And so I think those are just kind of general, just speaking to folks like you want to be spoken to, like just kind of basic humanistic things. Lola Dada-Olley (19:44) in your personal, professional experience, so the mix of the two, what do you think your field gets right and what do you think still needs to improve when it comes to care for people with co -occurring conditions? Breanna (20:07) I think co -occurring is really unique. And when I say co -occurring, because it's used in different spaces, we hear it with substance use. Specifically talking about individuals who have developmental disabilities and mental health needs is, from a systematic perspective, we are not set up to do any of this. So most states have their developmental disability lane and their mental health lane. you pay for your people and you pay for your people. But we know statistically that if an individual, disabled individual comes in contact with the system at all, they are more likely to experience some type of trauma or aversion or mental health condition as a result of just being, you know, getting services, right? And so one, we have these two siloed things and they don't, the people literally do not talk to each other most times and they don't understand the needs of the other population. And that was my experience here in Georgia as well, you know, when I worked in a government position. And so just understanding, I think, is where we start. And then looking at how folks get access to services, because there's exclusionary criteria. In my state, if you have a certain developmental disability, you can't get access to mental health support. And that's a lot of the fight that we have right now. Lola Dada-Olley (21:31) Hmm... Breanna (21:35) So you can't get what you need. then, I'm very passionate about that. I'm talking to mental health providers and they're like, well, autism is their primary diagnosis, so they can't have this. I'm like, they have anxiety and they have sexual abuse and they have this. And so educating those providers that the modality that you use if adapted for those who need it can work. I think we need more research in those areas as well because a lot of our mental health diagnosing treatment is based on verbal interviews. It's based on the ability to be able to engage in conversation. And so that doesn't work for a lot of folks. And then when we use kind of these behavior management strategies, psychiatric hospitals, or these really restricted levels of care, when we could just support people in meaningful ways, you know, they wouldn't have to get to a psych hospital if we evaluated them appropriately in the ER and we realized they had GI issues and it wasn't a psychiatric issue or you know, they're being abused. They're not acting out for no reason. So I think a reform in medical, the medical system, our system and access to services would be the best place to start. And a lot of what I do is awareness. particularly with BCBAs is, hey, this person is communicating something, let's try to figure out what it is. And then a lot of times we figured out and we have nowhere to refer them. So how can we do what we know is right within our scope of practice, essentially. Lola Dada-Olley (23:20) You give, so you mentioned training, part of your training is caregiver training. So what aspects do you focus on most and Breanna (23:33) It depends on the audience. I enjoy talking about co -occurring diagnoses and just acknowledging that disabled folks have psychiatric needs as well. I enjoy that. I enjoy talking to caregivers and normalizing their experience because a lot of times they feel like they're the only They are like, Miss Brianna, you wouldn't believe what happens. Well, actually, that's pretty normal. Or that's pretty expected. let's, you know, how can we support it so that you stay mentally well? Let's talk about some of some of the risk factors or some uniquenesses of having a Black child in this space. And let's also talk about services and supports. And so I really enjoy coaching caregivers on how to advocate for themselves and their child. I really enjoy that because they oftentimes are so defeated and parents are given so much information that's wrong and just teaching them to question it. I listen to you and your husband talk about insurance, right? Teaching them all of those things, which isn't always traditional ABA or traditional social work, but I would argue that equipping people with skills to get their needs met is actually a great opportunity. So I really enjoy doing Lola Dada-Olley (25:11) You certainly take a holistic approach to things. And you're right, the system's very much set up to be in silos, even though we are whole people. Like you and I are two people sitting at multiple intersectionalities, yet society may only view us as one thing, but we are truly, we're all multi -hyphenates in various ways. So. With that in mind, you know, we're thinking of intersectionality, we're thinking about dichotomy, we're thinking about the layers having the layers, right? When you're giving caregiver training, and these are caregivers, particularly of Black kids, Black or people of color, how do you hold the tension between giving these families hope and also giving them a realistic picture? of the type of advocacy that is coming ahead of Breanna (26:15) So I think it comes from that assessment piece is me really identifying where they are. I've worked with families. I worked in a developmental clinic from like point of diagnosis to adult, you know, caring for our adult siblings. So it depends on where they are at and what they desire. Sometimes we are not in a space. And I had to learn that really early on because I'm so passionate about I wanted to give all the resources. And that wasn't always great. And so just realizing where they are and what they need. And again, I think that comes from that self -determination piece is I'm going to tell you what I can offer you. I'm going to tell you what I think. And you let me know when you're ready. And we can go as deep into it as we need to. Or we can kind you can say, hey, Ms. Breanna, I can't do this today. OK, that's great. hey, this is what I can do. And I oftentimes work with single caregiver homes. And so for me, looking at it holistically, right, it could be interpreted by some as, this parent isn't doing this. They're not implementing this. You got to pay the bills. You got to take care of yourself. You got to take care of this kid. You got to do all these things. So my approach is tell me what you can do. And it can be really small. Let's just start with this one thing. And that's just kind of how I start. So just figuring out where they are and then meeting them where they are. And sometimes I'm not the best fit. we go through, people go through cycles. Some people want to kind of deny it. Some people have different approaches and that's fine. I'm not angry. I can just tell you what I have to give and you make the option. It's your option to choose. So it doesn't always work out and that's okay too. Lola Dada-Olley (28:11) So, said you meet the caregivers where they are and depending on the situation, you kind of adjust based on where they are and some caregivers are in denial. I'm glad you brought up the D word. So, knowing that the sooner you can introduce interventions, the better off the outcomes will be later on in the adult versions of these kids. How do you hold that tension of kind of holding the hand while also letting them know that time is going? Breanna (28:51) through relationship building. So like that's where we have to start is from the beginning. So I've already told you, you know, I got a certain set of skills and when you're ready, we can tap into it. And for some folks, before I start talking about intervention or change, I start from this acceptance piece because I feel like a lot of where folks get like a lot of it's the unknown, right? Lola Dada-Olley (29:12) Mmm, that's Breanna (29:18) Well, sometimes I hear really wild things like, well, some parents are not kind. They're like, she's so weird and I can't do this and she's embarrassing me. Well, let's talk about when your child did this, this is maybe what they were experiencing. If they're open to that. And sometimes it's kind of chipping away, but just starting from there is that understanding piece of like, some parents are blaming themselves, right? Like I did this or, you know, so I just start from that general education. And it's so interesting because I have a family who I worked with and I met them two, three years ago and she was ready to terminate her parental rights. was, she had, he had been told he wasn't diagnosed till like 12. He had anger issues. He had ODD, he had all of this. She was, she was leaving work. Last year he was in a school play. This year he's in camp. She sent me pictures. He's in camp. She said, you gave me hope. And what it was is she was like, he's so disrespectful. She didn't understand. was just her. Like your child doesn't understand the social hierarchy of authority. So when he's questioning you, it really is him trying to understand, not him trying to be disrespectful. And us really working through her understanding her child and actually getting to like him again, because I don't think a lot of parents want to talk about there may be times where you don't actually like your child. And I've had families talking to about that to her saying, I'm hopeful. He's at school. He has friends. He was just in a play and we were all at the play and he did phenomenal. So for her, it started at like understanding that because she thought she had failed him. And it was just, he had unmet needs and he was a black boy and he got medicated. He got labeled with everything else and she thought she was a bad Lola Dada-Olley (31:24) What were some of the incremental steps you employed that allowed this success story to flourish? Breanna (31:35) Well, it wasn't just me, it was a team. So I got to work with some staff who, again, that's a relationship, right? They trusted me because this young boy was referred to me from a psych hospital. And a lot of my staff were used to working with early intervention kids. And I was like, hey, we're going to do it. Our first session, he was aggressive towards me for several hours. And so we just decided to take a really Lola Dada-Olley (31:37) Mm -hmm. Breanna (32:04) a natural environment training approach, help him understand himself because at this point his self -esteem, I'm bad, I got anger issues. So we introduced autism to him. We showed him sensory experiences. We took him in the community and there were times where it wasn't great, but we were out there supporting him in his most challenging times in the community. teaching him about his feelings. We were teaching him natural consequences. You can't talk to Ms. Breonna any type of way and expect it to be okay, right? This is how other people are gonna treat you as well. so building up his self -esteem, building up mom's confidence in her skills, and just kind of really natural environment training with him, building a relationship with the school. And so he had it in I think we were able to kind of support it and nurture it and bring it out. But he's in summer camp. He had been kicked out of all of them before for a decade. So we're doing great. So yeah. Lola Dada-Olley (33:22) Let me ask question about we know that a lot of this stems from not enough resources in these communities and all communities really when it comes to individuals with disabilities. So I'm going to ask you to imagine here if money was no object, no object, you could do anything you want you wanted to in the great state of Georgia, in the great state of Texas, where I live throughout the country, money was no object. Where would you invest in the autism mental health and IBD spaces? Breanna (34:05) call this the social work magic wand question. Lola Dada-Olley (34:08) Yes. Breanna (34:12) I would start with the medical system because unfortunately that's where a lot of this, that's where these diagnoses and these criteria is. Like that's where I would start is educating those providers, changing that curriculum of what this can look like. And so this young boy didn't present, you I was just meant to, he didn't present, right? Like he wasn't, Me and his mom said he wasn't disabled enough, right? He didn't look autistic. And so he got, he saw lots of doctors. He saw lots of providers. He saw lots of therapists. He was in school and nobody picked up on the fact that like he wasn't just being bad. He was overstimulated. And so if we start there from a foundational educational place, right? And I think that's also got to do with how we value people as a system. And that's a whole nother conversation around Western values. But everybody has, everybody can contribute. And so just really trying to figure out what is it that this person is communicating. And so if we like build that into what people learn, right? And the system that's supposed to be helping, I think that would be really helpful. I think paying people who do the work enough. Lola Dada-Olley (35:13) Yes. Breanna (35:36) is really important as well. We have a provider shortage in general, and direct care staff. And again, that goes back to how we value disabled people. We don't. And if you start looking at the intersection of like disability history and Black history in our country, can tell you a lot about why we're here, right? In Black bodies and disabled bodies and, you know, how we don't consider them whole. And So starting with the education piece and then creating services for people that are holistic. And we used to do, I think back in the 80s and 90s, we used to do more of the medical kind of collaborative services where providers could get compensated. Like if I wanted to partner with the psychiatrist and I wanted to partner with the SLP, We used to do more of that collaborative care and people could get reimbursed. I think we need to bring that back because we're all kind of guessing and throwing things at the wall. And if we are all seeing this whole person, we should be communicating. But people can't get reimbursed for that. So they don't do it. Right. So those are a few places I would Lola Dada-Olley (37:00) Breaking down the silos is a very common theme and I talk about that too, about like for instance when you move across the country and you decide, you realize that the states of America are not fully united because the services in one state vary very differently, very, very, very different. Breanna (37:24) Mm -hmm. Lola Dada-Olley (37:24) and we're all in the same country allegedly and you move to another state you're like wow this zip code has changed everything so that would be another way start all over Breanna (37:32) And you have to start over. You have to start completely over. We used to get so many crisis calls for people asking where they could Lola Dada-Olley (37:42) Mmm. Breanna (37:45) and people calling to move to Georgia. And I have to be honest, you might want to really look into services and options. So, yeah. Lola Dada-Olley (37:49) Yeah, might want to think that through. Yeah, yeah, yeah, yeah. Years ago, particularly when we first touched down in Texas and people were only focused on the lower cost of housing. And I said, if you have a child with a disability that needs services, think that through again, because you might have a cheaper house at the expense of everything else. So that is for sure. So for families looking for resources in your locale, where you're at, how could they start to at least get a baseline of what's out there for them? Breanna (38:40) Well, my state is unique in that care coordination is not guaranteed. And if you have straight Medicaid, you don't have care coordination. So ideally, a care coordinator would be able to assist you. What I need is families who get a psychological with three pages of resources and links and things to follow up and they don't know where to start. So if you have a funder who uses case management or care coordination, then I would start there. I always tell families, particularly this is one of the first things I do after they receive a diagnosis or their child's, their or their child's level of care changes is to connect with another person with the lived experience. Because sometimes folks isolate, know, some people have different experiences. And so just to have a peer who's been through it or who knows, you know, that's going to be so much better than me talking to you. I mean, I've been in the field for a really long time, but I think families have different lived experiences and are more resourceful than you know, because you have no choice. So that's one of the places. I also say to start because there's stuff you know, folks find out about things quicker. And then every state has a technical assistance organization. Now they vary by state. So here in Georgia, we have a place called parent to parent. and they have kind of databases and you can call and you're talking again to another parent. And I think that can be really reassuring at times. And so those are just some of them. I tend to tell people to be mindful, although I know it's hard about just jumping on the internet and joining all the groups and joining all the listservs and listening to all the influencers, particularly now, I think it's confusing. Lola Dada-Olley (40:53) Yeah I know. It's a nice way to put it. Some of those influencers is just straight up misinformation. Like, it's just... boy. Breanna (41:02) for folks. Yeah, and I encourage families to, while I think access to information is great, you have to center what is going to be significant and meaningful to your family because there's going to be all types of recommendations, all types of things. And so again, I think having a peer or somebody who's been through it or somebody who has similar experiences with you is really, really helpful because I've had parents almost have breakdowns themselves because they're like, well, Miss Brianna, I heard ABA is bad. I want to do general parenting. I've had families go to other countries and get stem cell. There's so many things out there and it is so overwhelming. So that's why I think building families up is so important because you're you're going to get information overload. Lola Dada-Olley (41:43) Hello. I tell parents, because we've definitely been down that road, we have this framework. It's like, okay, are we doing the best we can with the information we have at the time within the monetary and geographic limitations we have? And if we can answer that, yes, we do our And we try really, really hard not to look back because if you do that for too long, it prevents any progress moving forward. Much easier said than done, but that's the framework we use because it's so, so easy to get overwhelmed. It's so easy. Breanna (42:33) Mm -hmm. Lola Dada-Olley (42:42) Brianna, thank you. You are a wealth of knowledge. Where can people find you if they're looking for resources in your area? Breanna (42:49) So you can find me at synergybehaviorconsulting .com. I'm on Instagram and Facebook, LinkedIn. I'm all in the internet and pretty responsive. And if I can't provide support, likely will send you to someone who may fit your needs. Lola Dada-Olley (43:11) Thank you so much. Thank…

Not Your Mama's Autism (NYMA)

1
Access to Reproductive Health Care: Autism and Intellectual Disability Edition 29:07

18 weeks temu29:07

29:07

Summary In this episode of Not Your Mama's Autism podcast, Lola Dada-Olley and her husband, Tosan Olley, discuss the complexities of navigating reproductive healthcare for their daughter, who is on the autism spectrum. They share their journey from recognizing the onset of puberty to preparing for their daughter's first period, emphasizing the importance of communication, family support, and collaboration with healthcare providers. The couple reflects on the emotional challenges and milestones they encountered, as well as the long-term considerations for their daughter's reproductive health. Takeaways Navigating reproductive healthcare is crucial for children with autism. Communication about puberty can be challenging but necessary. Dads play an important role in discussions about reproductive health. Preparation for menstruation involves multiple therapy disciplines. Understanding sensory challenges is key in healthcare planning. Access to reproductive healthcare can significantly impact quality of life. Long-term planning is essential for children with special needs. Collaboration with healthcare providers is vital for effective care. Celebrating milestones is important in the parenting journey. Pre-decisioning helps in managing future healthcare needs. Chapters 00:00 Navigating Reproductive Healthcare for Our Daughter 02:51 Understanding Puberty and Its Implications 11:10 Preparing for the First Period 16:25 The Day It Happened 20:14 Long-Term Considerations for Reproductive Health 25:03 Celebrating Milestones and Future Planning Transcript Lola Dada-Olley (00:01.395) Welcome, welcome everyone to the Not Your Mama's Autism podcast. I am back yet again with the hubster, the hubby, Tosan Olley. We are talking about a not so light topic about our daughter's reproductive healthcare and the decisions we are starting to make for her in hopes of her living the highest quality of life possible. For those new to the podcast, we have an 11 -year -old daughter who's minimally verbal, on the autism spectrum, and intellectually disabled. So, this episode will walk through some traditionally seen as uncomfortable topics, things like periods, things like cramps. things like talking it through as a family for a child who has communication challenges. This is naturally a difficult conversation, whether or not your child can traditionally communicate or not. So, our daughter has a history of some sensory challenges associated with the way her autism manifests. So, once she turned 10, And we knew that that next phase was right around the corner. We had to really sit down and think about the type of options she would have, not only based on her autism, but quite frankly, based on her family history that we know of at least when it comes to reproductive health, our family on my side, at least part of my side of the family, we've had a history of fibroids, PCOS, difficult periods. how could that potentially look in a growing child who will one day become a young woman who may not be able to communicate things like pain in a traditional way. So, we are pulling back the covers on this so you all could see some of the conversations my husband and I have had, some of the conversations we've had with her healthcare providers and hopes. Lola Dada-Olley (02:24.707) that we help other families like ours and not just those families but the health care providers that are part of those villages as well. So with that in mind, let's get started. So, this all started when she was 11 now, is it when she was nine going into 10 or maybe 10? Tosan Olley (02:51.336) Mm Lola Dada-Olley (02:51.971) talk about the endocrinologist. So, we did a blood test on Alero and we sat in her office and she told us that based on the blood tests, puberty is amongst us. Tosan Olley (03:08.648) I think we rewind a little bit. Yes, we did the blood test, but we went into that conversation with the endocrinologist with a little bit at the back of our head that one study showed that puberty seems to be hidden earlier. And even though she was nine going on 10, it felt like, you know, this generation and the generation before and on, you every generation seems to be hidden a little bit earlier. We had noticed some changes in our body. We were trying to make the determination. it, you know, just chubby baby versus, you know, development? Lola Dada-Olley (03:50.211) Yeah. Tosan Olley (04:00.93) So we went in with a. We think we need to confirm, we need your help, we need your input and what have you. So that when she came, when the chronologist came, it was less like, shock. was more like, it's true. know, puberty, know, baby girl is now. Lola Dada-Olley (04:06.413) Yeah. Yeah. Lola Dada-Olley (04:26.935) Yeah, puberty is among us. Tosan Olley (04:34.22) baby woman? Baby lady, not wife woman? Lola Dada-Olley (04:36.191) Gosh, baby, baby. No, baby, baby. Yeah, definitely not quite woman, but she's on the path. She's definitely on the path Tosan Olley (04:46.439) Yeah, and you know, my head, I had a thought in my head that half the fighters watching this just ran for the exit. Lola Dada-Olley (04:57.845) Yes, but it's definitely a topic that think dads need to be in on as well. It's really important. Tosan Olley (05:04.782) Yeah. And I also think that's, or maybe this is wishful thinking, but I think proven by the dads we have around us, you know, in our ecosystem that. This is less taboo for our generation, I think, than it was, you know. Yeah. Lola Dada-Olley (05:26.859) Yeah, I'm hoping so and I think so because I remember when I had my first period I went to my dad because my mom was working she was at home and my dad literally said, you can tell this man it looked like a deer caught in headlights like just like no and he said go go and find your mother go and find your mother. Okay. Tosan Olley (05:35.894) You Tosan Olley (05:48.238) Yeah, so once the endocrinologist confirmed that at least biochemically. she had achieved puberty. Physiologically, we knew it was just a matter of time for the body natural processes to begin. And in conversation with Endo, correct me if I'm wrong, she gave us the referral to the gynecologist that... Lola Dada-Olley (06:25.143) Yes, yes, yes, she did. Tosan Olley (06:29.554) was not just a pediatric gynecologist, but was a pediatric gynecologist that had specialization in kids on the spectral neurodivergence and on and on and the little nuances. Yeah. Lola Dada-Olley (06:40.205) Yes, all types of neurodivergence, including intellectually disabled girls, which was very, important to us. Tosan Olley (06:52.576) and not as common as we, you know, which is a topic for another podcast, why that skill set that would help newer diversion girls doesn't seem to be as common as I quite frankly should think it should be. So it's the ecosystem connecting to the next chain. of command and connected to the next link on the tapestry of care that we sought to build. And as a dad, think my mindset was a bit of a... Tosan Olley (07:42.51) she's gonna grow fast, right? B, I need to get my workout on. because I'm going to be bodyguard to this little lady for a little bit. So, I need to get my knees stronger and see, you know, the challenges of her physical care. You know, we've been doing this for a little bit for her. So, what's another bodily fluid added to the mix? Lola Dada-Olley (08:23.738) I remember the endo telling us, because you alluded to it, the endocrinologist telling us something to the effect of, well, it could happen anytime from now within the next two years, according to this blood test. And, you know, me being who I am, I was just like, OK, we got up to two years, could certainly be less. Tosan Olley (08:34.337) Mm -hmm. Lola Dada-Olley (08:46.071) thinking through what that can now look like when it comes to just overall prep care to get to that day. Thinking through, you know, with this child with this history of sensory challenges. So, we went to her ABA therapist, her occupational therapist, also her speech therapist saying that this is the beginning of the passing of the baton to this next phase of life. So, we know we have Tosan Olley (08:49.548) Mm -hmm. Tosan Olley (09:06.158) Mm -hmm. Lola Dada-Olley (09:16.041) a child who doesn't traditionally communicate so on our iPad let's really focus on how she can communicate pain and where that pain may be in a more targeted way just to get ready so she could be able to at least use her iPad and tell us pain and hopefully one day tell us pain in my stomach so we can know that there are menstrual cramps coming maybe and help us better serve her... Tosan Olley (09:27.022) Mm Tosan Olley (09:41.218) Mm -hmm. Lola Dada-Olley (09:44.611) So that would be the work of speech therapy and a mix of speech and ABA. For OT, it would just be starting to get her body ready to certain feelings down there, like when it comes to things touching. So, getting used to maxi pads, getting used to period panties, and just being okay with the feel of that, because it's a very different feel than her. Tosan Olley (10:02.508) Mm -hmm. Lola Dada-Olley (10:12.887) diapers or her underwear and reinforcing that, reinforcing personal hygiene now and thinking of this life change and thinking how it could affect her, just her body changing and just the sight of blood. We were worried about what that could mean for her. And so a lot of the next year was talking her through that. Tosan Olley (10:17.347) Reinforcing hygiene. Yeah. Tosan Olley (10:32.866) Mm -hmm. Lola Dada-Olley (10:41.563) providing her therapists with maxi pads and period panties and talking through with her caregiver therapist at home, pointing to the iPad, talking about pain, just so that she can get used to what the word for pain is and when it should be invoked more. We did that for a good year. And then earlier this year, again in preparation for that, we went to the gynecologist to talk through, when that day comes, what does that now look like from a gynecological perspective based on the medical history we are aware of? And he helped us talk through some options. Tosan Olley (11:34.408) Yeah, and I think it's, you said it, you know, when we make decisions based on what we know, with the geographical financial constraints, and we did, we've run our lives that way for a long time, you know. the kids that really forced that mindset. So that we're not caught unawares. We're not unprepared for what is in this case an eventuality. So, when we went to the gynecologist, the conversation was... more. here is what we are thinking, you know, based on our research, you know, based on history, based on family history, based on what we know of allelic sensory, baby girl sensory issues and, and what have you. Here's what we are thinking, here are the things we need to consider, here are the things we need to be aware of, we have no idea what our pain thresholds are like. We can guess that they're not because of our sensory issues. Everything is magnified. So here's what we have as we do it, the full set of facts. Game plan for us. Help us walk through this. This is where we bring in an additional variable of the doctor's experience, specifically with Tosan Olley (13:29.15) children like ours to walk through exactly what we need to start putting in place if we had not thought about it. You know, one of the things I think that came out of this, maybe wrong, was not just the iPad of showing that she has pain, but being able to communicate something as vague as discomfort, right, or I'm sad. Lola Dada-Olley (13:54.647) Yes. Yes. Tosan Olley (13:56.982) You know something but in Vegas feelings if she can't or I need a break exactly so took that information, you he he gave us that information and essentially gave us the game plan and the game plan was You know a lot of things that we're already doing getting her used to Lola Dada-Olley (14:01.023) or I need a break. Tosan Olley (14:25.778) wearing the period panties even though there's no period so that when she eventually has to wear the period panties, it's not like, what is this, Embedding with each therapy provider stacks of female hygiene products, you know, like stock up for when the Clarion call goes out. Then everybody's like, go, go, go, go, go. Lola Dada-Olley (14:44.819) Yep. Lola Dada-Olley (14:48.395) When that time comes. Tosan Olley (14:55.118) know, military terms. And for him, he said, immediately it shows up. Lola Dada-Olley (14:55.383) Yep. Yep. Tosan Olley (15:05.13) And there are medical decisions that he had already put into her chart. So that when we actually called to get him, we got his nurse, know, a fast order, there we go. But it's all a, this is an eventuality. Lola Dada-Olley (15:23.543) you're fast forwarded, you're fast forwarded. You're fast forwarded. Tosan Olley (15:34.188) what does preparation look like so that when it's time to go, we are not at that point with those emotions. You do not want to be trying to figure out what's next at that point, know, figure it out where you are, quote unquote, clear headed. Because the emotions of it has come. It's a different ballgame. Lola Dada-Olley (15:56.269) emotions are very real. So as we talk to you as the proud parents of our baby girl, and I'm trying to say this without breaking down because Tosa talked about emotions, but this past week it happened. The day finally came and we got the eagle finally landed and I was at work and I got Tosa and I were both at work. Tosan Olley (16:15.679) eagle landed. Lola Dada-Olley (16:25.439) in the office, in the physical office, and we got two calls and quick succession from Alero's teacher. And then I tried to call her back and I just knew. The mother's intuition, I just knew, I just knew. And I instinctively went to the email and it was something cryptic like, there's an update regarding Alero, please call me back. And I forwarded it to Tosan and I was like, Tosan, it's happened. And he writes back. Tosan Olley (16:49.942) you Tosan Olley (16:54.014) Yeah. Literally. Literally. That was my two-word response. And right at that time, the teacher called me and she actually caught me. And she's like, Mr. Ali, I just wanted to let you know, Alero's period has come. And we changed her. Lola Dada-Olley (16:55.441) shit. Lola Dada-Olley (17:02.187) And this is... Yeah, that was a two -word response! Lola Dada-Olley (17:20.606) Oof. Tosan Olley (17:22.52) to because again, we embedded female hygiene products everywhere. We change into the period pants that you left. And I think I was actually about to walk into a meeting. Yes, I was about to headline a panel at work. And I, my mind was like, be damned. I literally told her I'm on my way. Lola Dada-Olley (17:35.949) You're about to be - a big panel! You're about to Tosan Olley (17:52.426) And she goes, no, no, no, no, we don't need you. We're just letting you know. Which back to the decisions we made as to the particular ISD and the majority of the teachers and the ecosystem that we chose, it's for so that very reason that the teacher can go, no, no, no, we don't need you. We got that. We just let you know. You know? And I... Lola Dada-Olley (18:18.882) Such a blessing, such a blessing. Tosan Olley (18:20.972) did my panel and everybody, nobody on that panel actually. Lola Dada-Olley (18:23.147) And nobody had any idea what we were experiencing. And the funny part is, as he was doing his panel, I was prepping for a major presentation at work, a major presentation. It just shows that life will always continue to life. Tosan Olley (18:41.214) Life doesn't ask for permission to life. So that was that auspicious day. Lola Dada-Olley (18:44.585) It really doesn't. It does not at all. Lola Dada-Olley (18:54.763) Yeah, so to land that plane though, so in the midst of these very busy careers and life, life being and our daughter, you know, moving and officially moving into this new phase. We were talked, we found a minute in the midst of I think you had finished your panel, then you finally called me because I was playing phone tag with the teachers. I didn't reach them yet. You called me to confirm. Tosan Olley (19:17.432) Correct. Lola Dada-Olley (19:24.757) And you said, our baby girl is not a baby anymore. okay. It's true, she's not. Tosan Olley (19:29.504) Hehehehehe Tosan Olley (19:34.746) And gave you also feedback that teacher was like, she's fine. She's laughing. She's giggling. She's happy. And she's okay. We'll see you when you come pick her up. Lola Dada-Olley (19:48.804) Yeah, yeah. And then we, and then you and I talked and I said, you know what, our plan is in place for a reason. Let's call the doctor, let him know what happened. And we implemented our plan, he added notes. And it's a reminder, and this is not political. Tosan Olley (20:09.688) Mm -hmm. Lola Dada-Olley (20:14.531) We don't want it to be the following statement I'm going to make here, but there are use cases for birth control and for other birth control devices where it has nothing to do with reducing pregnancy. It's literally to increase the quality of life of the patient separately from even thinking about things like pregnancy. I mean, Our daughter is cognitively a toddler and physically a preteen girl. So, we have to look at things, looking through the eyes of parents who have to think about her long -term sensory needs to regulate her body chemistry in a way that can increase the quality of her life for the rest of Tosan Olley (20:58.218) to regulate her body chemistry. That's it. Lola Dada-Olley (21:08.867) because she's just starting this journey. It's 30, 40 year plus journey before she would even touch menopause. These are the type of decisions families like ours have to make. And without access to this, it can hurt her. It can stomp her development. And I'm not even talking physically, but mentally for her future too. People don't understand. Tosan Olley (21:16.525) Mm -hmm. Tosan Olley (21:36.078) Yeah, because for us, for her, rather... Quite frankly, a lot of times with therapy is you're trying to create an environment that makes it most optimal for her to learn or to acquire. Let me use the word acquire, to acquire skills. And anything that distracts from her body's brain power, energy that would have been better served, acquiring those skills. It's our job and the medical ecosystems jobs to mitigate, right? You know, there's a point in our life where high environmental allergies were off the chain and we again, we're blessed to be in position. We, if you remember, bought like air purifier filters for the classroom, right? You know, to. trying to eliminate anything that would diminish her ability to acquire skills. So in this, clinical as this would sound, this case, the medical, what's the term for it? But the medical decisions and solutions that we talked through with her doctor was in order to ensure that a child that is not equipped on her own to deal with the sensory, physical, mental, emotional swings and whatever the case may be. Lola Dada-Olley (23:23.719) emotional Tosan Olley (23:32.422) and knowing that does not have the ability to acquire those skill sets before the time of the Eagle King, right? What can we do to come alongside her to make sure she's, if she is equipped or the environment is equipped to aid her in facing those challenges, because we are not going to be able to, you know, this is a challenge that Nobody but her can bear. She's going to have to bear it. It's her body. So, it was gratifying seeing the r esults of decisions made a year or two ago from a medical perspective, from a school district perspective, almost a decade ago, it was gratifying seeing those. Exactly right, was gratifying seeing all of those kick in and go, OK, we act, you know, it played out as we thought it would play out. Lola Dada-Olley (24:31.615) a private therapy perspective as well. Lola Dada-Olley (24:44.813) so far. Tosan Olley (24:45.846) so far where we were making those, putting those decisions in place. And she is, as at the time of this recording, has weathered her first storm. Lola Dada-Olley (24:50.317) Yeah. Lola Dada-Olley (25:03.137) Yes, yes, yes. She has like a champion. And in fact, and even one time in school, she pointed to her stomach and told her teacher pain. And we think that was tied to the menstrual cramps. So, the fact she was even able to communicate that is just, it's such a blessing. It's such a win for our family. And you know, one day at a time, one day at a time. Tosan Olley (25:17.09) Yep. Tosan Olley (25:21.102) That's huge. Tosan Olley (25:30.722) Yeah, and we. Tosan Olley (25:35.48) This is not the end of the reproductive journey for her, right? Obviously. And we're in tight consultation with her medical ecosystem, tight consultation with her therapy ecosystem, with the school, with our faith -based community. We're in tight consultation with our... Lola Dada-Olley (25:56.589) Yes. Tosan Olley (26:02.71) I guess for lack of a better term, life mentors, folks who have a daughter who is years ahead of us, of ours, so that, we're not trying to recreate the wheel. A lot of this is, what did you do? How did it turn out? It's not a guarantee that it will turn out exactly the same for our daughter, but it's information. It's counting the variables. Then we make a call. There you see how it pans out. Then something else shows up. You do the same process. You make a call. You see how it pans out. With the knowledge that this is a marathon, and we are going to be making, having to make those calls for decades in order to. Lola Dada-Olley (26:53.219) Absolutely. Tosan Olley (26:57.984) set her up for the most optimal life that we can set her up for. You know, I am officially the dad of what's the term, pubescent teenagers. If anyone is wondering why to create my beard has doubled. Ta -da! Lola Dada-Olley (27:15.267) Pray for us y'all, pray for us Lola Dada-Olley (27:27.905) You Tosan Olley (27:34.498) That's how it is. Tosan Olley (27:41.154) So. And the other time, you know, the story continues, the story continues to unfold. But we celebrate. The wind. Tosan Olley (28:04.718) her first storm was able to be weathered as well as it possibly could have been. A due to the grace of the Lord Most High and medical ecosystem, medical planning, therapy planning, putting in the guardrails. Tosan Olley (28:40.366) Pre -decisioning. Pre -decisioning. Spending a lot of time in the pre -decisioning so that when the decisions needed to be made, it was a... duh. Like, you you just, you can move a little bit faster. Lola Dada-Olley (28:42.667) decisioning. Yes. Yes. Tosan Olley (29:01.62) And we, we, I'll look at what the journey continues. Lola Dada-Olley (29:06.999) Yes. Yes. Tosan Olley (29:12.066) Cool beans. Lola Dada-Olley (29:13.827) Until next time everyone.…

Not Your Mama's Autism (NYMA)

1
Advocacy in Action: A Talk with Ms. Texas 2024 Annette Addo-Yobo 48:55

21 weeks temu48:55

48:55

In this episode of Not Your Mama's Autism Podcast, host Lola Dada-Olley speaks with Annette Addo-Yobo, the first immigrant-born Miss Texas, about her journey from Ghana to the U.S., her advocacy for autism awareness, and the importance of representation. Annette shares her personal experiences as a sibling caregiver, the cultural stigma surrounding autism, and her aspirations to influence policy and support families navigating the challenges of autism. The conversation highlights the need for better resources, early intervention, and community support for families affected by autism. Takeaways Annette's journey from Ghana to becoming Miss Texas is inspiring. Representation in media and pageantry is crucial for marginalized communities. Cultural stigma around autism can hinder family support and understanding. Advocacy is a lifelong commitment, often born from personal experiences. The SPAR Project aims to bridge gaps in autism awareness and resources. Parentification can significantly impact the identity of sibling caregivers. Mental health support is essential for caregivers navigating their roles. Early intervention can change the trajectory of a child's development. Advocacy in Washington, D.C. can lead to meaningful policy changes. Community support is vital for families affected by autism.…

Not Your Mama's Autism (NYMA)

1
Navigating the High School Transition: A Talk With My Son 17:55

24 weeks temu17:55

17:55

In this episode of Not Your Mama's Autism podcast, host Lola Dada-Olley engages her son Fela in a heartfelt discussion about the transition from middle school to high school. They explore the various high school options available, the importance of extracurricular activities like band, and the challenges that come with academic rigor. Fela shares his personal experiences and offers advice to other students facing similar transitions, emphasizing the importance of hard work and resilience. The conversation highlights the growth and development that comes with navigating educational choices and personal interests. Takeaways Choosing high schools is a significant decision for students. Middle school serves as a preparatory phase for high school. Extracurricular activities play a crucial role in student life. Students should consider their interests when selecting a high school. Academic rigor is important, but students should not fear challenges. Transitioning can be daunting, but support from family helps. It's normal to have concerns about moving to high school. Students should embrace hard work as part of their education. Making new friends is a key aspect of transitioning to high school. Reflecting on past experiences can provide valuable insights for future transitions.…

Not Your Mama's Autism (NYMA)

1
Workplace Neuroinclusion Strategy: Some Lessons Learned 32:17

31 weeks temu32:17

32:17

In this episode of Not Your Mama's Autism podcast, Lola Dada-Olley interviews Danielle Meadows, an executive director at JPMorgan Chase, about the importance of disability employment and the initiatives taken by the Business Solution Team (BEST) to promote neuro-inclusion. They discuss the evolution of the BEST program, common misconceptions about disability inclusion, the challenges faced in the employment landscape, and the significance of public policy in supporting individuals with disabilities. The conversation highlights the success stories of employees and the role of job coaches in fostering an inclusive work environment. Takeaways Disability Employment Awareness Month is crucial for promoting inclusion. The BEST program focuses on neuro-inclusion strategies globally. Misconceptions about disability often hinder employment opportunities. Transportation remains a significant barrier for individuals with disabilities. Public policy needs to adapt to support working individuals with disabilities. Job coaching is essential for success in the workplace. Collaboration among organizations enhances disability employment efforts. Recognition from institutions like the UN validates the program's success. Success stories demonstrate the potential of individuals with disabilities. The program has grown significantly since its inception in 2019. Chapters 00:00 Introduction to Disability Employment Awareness Month 05:11 Misconceptions About Disability Inclusion 09:29 Recognition and Growth of the BEST Program 12:33 Challenges in Disability Employment 17:26 The Importance of Public Policy 21:46 The Role of Job Coaches 26:54 Success Stories and Business Outcomes…

Not Your Mama's Autism (NYMA)

1
Reintegrating Our Daughter Into School Life 34:09

33 weeks temu34:09

34:09

In this episode, Lola Dada-Olley and her husband Tosan discuss their journey with their daughter Alero, who is on the autism spectrum. They share their decision-making process regarding Alero's education, including the challenges of navigating special education services, the impact of the pandemic, and the importance of adaptability in parenting. They reflect on their choice to temporarily withdraw Alero from school for therapy and the subsequent decision to reintegrate her into a supportive school environment. The couple emphasizes the significance of building a supportive community and learning from others' experiences in similar situations.…

Not Your Mama's Autism (NYMA)

1
Back To School: Embracing Technology and Student-Centered Learning 1:13:03

36 weeks temu1:13:03

1:13:03

In this episode, Dr. Kim Floyd, a professor of special education and an innovator, discusses her evolution in the education space and her role in standing up a center focused on assistive technology with people with disabilities. She shares her journey into special education, the development of a multidisciplinary approach, and the importance of trauma-informed practices in education. Dr. Floyd also highlights the unique challenges and strengths of rural communities in special education and the work of the American Council on Rural Special Education. She discusses the Center for Collaborative Assistive Technology Education Lab and the exciting projects coming out of the lab. Finally, she explores how assistive technology can level the playing field in education and therapy. The conversation explores the importance of assistive technology in education and the challenges faced in implementing it. It highlights the need for personalized and inclusive classrooms that cater to the diverse learning needs of students. The role of AI in leveling the playing field is discussed, acknowledging both the benefits and potential drawbacks. The conversation also emphasizes the importance of historical and cultural awareness in education and the need for teachers to be resilient, empathetic, and adaptable. The American Council of Rural Special Education (ACRES) is mentioned as a resource for further information.…

Not Your Mama's Autism (NYMA)

1
Addressing Daily Life Challenges with Revolutionary Tools: A Talk With Nadia Hamilton 37:20

1 year temu37:20

37:20

Growing up alongside a sibling with autism can transform your life's blueprint in the most unexpected ways. in this episode, we're joined by the remarkable Nadia Hamilton, who shares the touching saga of her brother, Troy, and how his journey on the autism spectrum has awakened a legacy of empowerment and innovation. Nadia's candid recount of the joys and hurdles they faced together unfolds into the creation of a transformative tool - Magnus cards - that now aids individuals with autism and/or cognitive disabilities to navigate the complexities of daily life with greater independence. Our conversation is a celebration of sibling love and the spirit that can give rise to social entrepreneurship with a profound purpose. As you tune in, you'll be captivated by stories that not only pull at the heartstrings, but also spotlight the monumental shifts in accessibility and inclusivity championed by visionaries like Nadia. Discover the compelling impact of the Magnus Mode app, designed to provide free, visual, step-by-step guides for those in the neurodiverse community, and learn how the Disability Experience training program is reshaping perspectives in corporate corridors. This isn't just an episode; it's a heartfelt tribute to Troy and others like him, who inspire a world that embraces every spectrum of human diversity with open arms and minds. Join us for an episode that weaves a narrative of hope, understanding, and the tangible change that comes from one sister's unwavering devotion. https://notyourmamasautism.com/ https://www.instagram.com/notyourmamasautism/ https://www.facebook.com/NotYourMamasAutism/…

Not Your Mama's Autism (NYMA)

1
Healthcare in America: New Year; New(ish) Expenses 22:01

1 year temu22:01

22:01

Every January, my husband Tosan and I brace ourselves for the impact of the 'January reset' on our family's finances. As parents of a child with complex medical needs, we're no strangers to the avalanche of medical bills that come with insurance deductibles and out-of-pocket maximums starting anew. Our latest episode offers an intimate conversation where we peel back the curtain on the financial challenges that families like ours face, diving into the intricacies of insurance policies in Texas, and the relentless vigilance it takes to ensure our daughter's healthcare needs are met. Join us for a heart-to-heart about the proactive financial strategies we've put in place, like leveraging Health Savings Accounts and planning for a multi-year safety net. As we exchange stories and strategies, Tosan and I reveal how we've navigated the stormy seas of healthcare costs and even seeking healthcare grants and exchanges when money was tight. We aim to empower and offer solace by sharing our journey, reinforcing the importance of resilience and the strength found in taking it one day at a time. https://notyourmamasautism.com/ https://www.instagram.com/notyourmamasautism/ https://www.facebook.com/NotYourMamasAutism/…

Not Your Mama's Autism (NYMA)

1
2023: Our Longest, Yet Shortest, Year To Date 26:52

1 year temu26:52

26:52

Our 2023 year in review episode is here. We discuss the ups and downs that is/was 2023, including a life changing family trip to Barcelona, an ice storm that prevented travel to our daughter's therapy, a short term caregiver crisis, the myth of work-life balance and so much more. https://notyourmamasautism.com/ https://www.instagram.com/notyourmamasautism/ https://www.facebook.com/NotYourMamasAutism/…

Not Your Mama's Autism (NYMA)

1
Redefining Success For Yourself After Trauma : A Talk With Addis Gonte 38:40

1 year temu38:40

38:40

In this episode, I speak with Addis Gonte, Non-Profit CEO and Disability Inclusion Advocate. We talk about how a car accident changed his life, resulting in traumatic brain and spinal cord injuries. We also speak on how his life changing accident led him on a new path to founding a non-profit, called Able Mindset , and many lessons learned along the way. https://notyourmamasautism.com/ https://www.instagram.com/notyourmamasautism/ https://www.facebook.com/NotYourMamasAutism/…

Not Your Mama's Autism (NYMA)

1
"Tweendom", Puberty and Autism: An Interesting Cocktail 26:15

2 years temu26:15

26:15

In this episode, my husband, Tosan, and I have a conversation about the transition we've made and are making into the start of adolescence. Our kids, a boy and a girl, are now both pre-teens and our daughter has an intellectual disability. We talk about the special considerations we have to think through and make as we raise neurodivergent children who are undergoing a new life phase. One day at a time. This episode is also available in video form on YouTube . https://notyourmamasautism.com/ https://www.instagram.com/notyourmamasautism/ https://www.facebook.com/NotYourMamasAutism/…

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