Autism Back to School Tips – Podcast

David Hancox, Podcast Host and Accra Chief Administrative Officer: Hello, listeners. And thank you again for joining us for another episode of Champions of Homecare Podcast here at Accra. In the first two episodes, we covered a pair of Accra service programs: we covered 245D, and we covered FMS. And if you haven't already done so, I would encourage you to go back and listen and check them out to learn more about those valuable services here at Accra.

Jason Dorow, Podcast Co-Host and Producer: We've got a lot more service programs to cover, right, David? We've got mental health care services, we've got PCA Choice, Home Health. We're going to circle back and cover more of those in the future. But today, we want to tackle another important topic. It's early August, everyone knows what that means: it's time to get ready to go back to school.

David: It is. It's time to get ready to go back to school. And that means a whole lot of preparation, especially for kids who are diagnosed on the autism spectrum. So today, I'm very, very excited because we're going to be joined by Ellie Wilson, the executive director of AuSM, the Autism Society of Minnesota. And she's going to share with us some information about getting ready to go back to school and some other tips and tricks. So let's welcome Ellie into the podcast. Ellie, welcome. Ellie Wilson, Executive Director of AuSM, somebody that I always enjoy spending time with and having conversations with. We're so excited to have you here with us this morning. Ellie, welcome.

Ellie Wilson, Executive Director of the Autism Society of Minnesota (AuSM): Oh, good morning, Dave. Good morning, Jason. Thank you for having me with you. This is gonna be such a blast. The invite is much appreciated.

What is autism and what are some of the misconceptions about autism?

David: Well, thank you, Ellie. And again, I think probably just starting at the very beginning for some of our listeners who may not be well-versed. What is autism? And what are some of the more significant misperceptions about people with autism?

Ellie: Yeah, absolutely. Autism is what is called a developmental disability, which means it's something that affects you from the time that you're born. Now, David, and Jason, that doesn't necessarily mean that you have to be diagnosed when you're very young; many people get diagnosed at various ages with autism. But it means that the way your brain has developed is different than what we call a neurotypical brain. And that affects many parts of processing and communication and sometimes behavior. The autism community is incredibly diverse; you probably have heard it before referred to as a spectrum. I cannot tell you with enough emphasis how wide this spectrum is. But there are some patterns that have to do with things like high anxiety around new experiences or unfamiliar experiences, the need for social supports to better understand interactions with people around them, and how to take cues from people around them in order to maybe model or exemplify certain behaviors. Or just like how they process things like sensory information or instructions to do a task. Most of the time, we can support these things. What's tricky for people with autism and one thing that they sort of have to endure on a regular basis is, first and foremost, this is a physically invisible disability. So depending on what sort of flavor of autism you have, there sometimes are people that can or cannot presume that level of disability when they first meet you. That can be a tricky barrier for autistic people. I think one of the other things is that we're coming through a time where there are some pretty heavy stereotypes persistent about autistic people. For instance, not having interest in social interactions or not having interest in friendships or sort of preferring to be alone. That could not be further from the truth. Autistic people that I know--and I know thousands of them--are just as motivated to connect with other people as you and I are. It just means that we might need to support that connection by being accepting of what feels great to them and being inclusive of them. That's a good way to start. But I know we're gonna get into a lot of other details about some specifics.

David: You know, Ellie, I'm glad there's one comment that you made that I think is really important to stress. Because I think one of the major misconceptions about people with autism is that they like to isolate or that they like to remove themselves from interactions with other people. So I'm very glad that you pointed out the misperception of that characteristic, because it's not true. It just means that we have to approach those interactions in a different way when it comes to people with autism. Real quickly, how prevalent is autism in our society?

Ellie: I'm really glad you asked. There is a function of the CDC--the same organization that gives us information about all kinds of medical diagnoses in our country--every two years, the CDC puts out a report. They do that by collaborating with universities around the country, one of which is the University of Minnesota, which of course is our home university here. The numbers that they most recently produced said one in 36 people in the United States, technically children, could be diagnosed with autism if they had the right access to diagnostic services. The Minnesota number is really close to that, slightly lower: one in 34. So we are consistently a state that comes up with numbers at or higher than the typical national prevalence.

David: One in 34 in the state of Minnesota? That's right. That is fascinating to me. I had no idea that the prevalence was that significant.

Ellie: David, I'm sure you remember a time when the number was one in a thousand, or one in 250, or one in 150. A lot of people ask me on a regular basis, is autism becoming more prevalent or are we getting better at diagnosing it in sort of different versions across more diverse people? And my answer to that question is yes, we are getting better at diagnosing. For instance, girls, people of color, people of different ages, people of different backgrounds and languages and cultures. But we definitely are seeing more autism than we used to see. So it's something that we're still trying to understand better. And yet the most compelling question is, how do we support this beautiful community as it grows?

David; You know, my first experience with individuals with autism--I'm going to date myself here--was a long time ago, back in the late 70's, when I lived and worked in a group home as I was working my way through college. One of the children that lived in our group home was diagnosed as autistic. But that was in a time in the late 70's when autism was considered rare. It's very rare and often served as kind of a catch-all diagnosis. If we couldn't exactly pinpoint what the developmental disability was in that individual or that child in particular, then they got slapped with that label of autism. That was at a time when we knew so much less about autism than we do now. Here at Accra, one of the largest constituency groups that we serve happens to be people with autism. Around 45-46% of our customer base are individuals with autism. When we think about that, it's really informative for our listeners here. What type of homecare typically benefits families who have children with autism or adult members with autism? What kind of home care services most benefit them?

What kind of home care services can benefit children with autism?

Ellie: That's a great question. You have to be a little careful in generalizing because we both know how diverse this community is. The thing we really focus on is--just like you would planning care for anybody else--this has to do with quality of life and what feels inclusive and meaningful to the community member that you're trying to serve. I think that we're kind of coming out of a time in which we feel like, there's a checklist for everybody and that everybody needs the same thing. Now it's a matter of those deeply personal questions. Does this person have access to peers, family, friends, neighbors that make them feel connected to their community? Do they have activities that are meaningful to them; not just a place to go, not just a warm body to make sure that they're okay but are we accessing their true passions and their personalities and the things that help them connect with the world? That can mean really competent in-home care from a direct support professional that works well in teams with the family. It can mean community participation and social support by making sure that even if a really successful activity might be something that you do at home, that we're also looking for those ways to create community connections being out and about. It has to do with mental health care and recognizing that just because someone has a diagnosis of autism does not mean that they are precluded or excluded from needing supports around anxiety or depression or other things that we all need support with in the mental health space. It also means really good care coordination across multiple fields, whether that's great case management or waiver management, for instance, which is something I know we could talk about for hours and hours. But the idea that autism is a pervasive developmental disorder, which means it doesn't just affect someone in school or in their home, or in their job or in X, Y or Z setting. It means that we need to approach supports holistically and across those integrated settings. And that's a huge barrier for a lot of autistic people who feel like they have to work in silos to advocate and construct some success in all those different avenues. I think we can do better than that. That's what Accra and so many of AuSM's partners are working hard to do, is like, let's make it a little easier on them, shall we? Because that's a lot. That's too much work to just live a happy, successful life.

David: And you used a really key word: that holistic approach. I think that is so important because it's something that we all enjoy in our lives. Why would we expect anything to be different just because a person has a diagnosis of autism? It's that holistic approach and that quality of life is so very important for them as well. Jason, I think you have a couple of questions about returning to school?

Jason: I was gonna say...Ellie talked a lot just now about community connection and the importance of all those social connections for kids. Most of that lives at school, right, Ellie? So what are some of the considerations for families who have a kid with autism as they prepare to go back to school?

What tips do you have for families who have a child with autism as they prepare for back to school?

Ellie: Yeah, well, there's two things I want to say as we kick off. One is that you're exactly right, Jason. School is at the center of the universe for all children ages; pre-K to 22-years-old in the disability field. It is hugely important, not just sort of socially and emotionally but also the public school system in particular is the mechanism that many autistic children get the services and care supports that they need. And that system kind of exists uniquely from the medical system or the social services system. So it's important to invest in the school experience because that is the central hub of a lot of supports that autistic kids need. I noticed that Dave mentioned that it was just under half of Accra's community that identifies as autistic and needing supports for that reason. But I hope that anybody who's listening today, no matter the disability, hears some of the universally helpful points that I think we can talk about together. We always kind of joke at the Autism Society that we don't check for card carrying members at the door; there are many disabilities that have sort of similar needs. And that's in part because the spectrum is so wide; we're inclusive of a lot of people with a lot of different, specific needs. So I think the stuff that we're going to talk about today is relevant beyond autism but I certainly did try to center that as what's especially important for autistic kids.

So if you can believe it, I've got three sort of categories here; three different categories of suggestions. The first has to do with preparing for a relatable anxiety that all of us have about starting school in the fall, it is tough. I'm a summer baby myself, I live and breathe for Minnesota summers, I love having school off. I love being in the lake. I love, like having the time away from school. And it's a rough transition back that we all have to kind of grind our gears to get into that mindset. But especially so for autistic people. There's something about autistic processing that has particular challenge around transitioning from one routine to the next. So giving as much lead time and guidance and hand-holding around those transitions is really important. So what does that look like? It could mean visiting the school with like an orientation night or a specific private request depending on what you need to visit the school. Even if you're not changing schools this year, even if the building isn't new, the classroom is going to be new. Maybe some of the special services that you receive is going to be new. So really getting in there and visit, usually walking the map of the spaces that the child is going to use. And not just like: Oh, here's the science room and here's the math room but like, where is the place that a person can take a break? Where is a place that the student identifies they really love and feel comfortable? Because maybe that's going to be a really relevant place for that student to be able to visit as they sort of ease into the school year.

Ellie: And then the question becomes, can we also replicate that in-person visit in something called a social narrative? A social narrative is a really easy tool to make. And there's tons of information both at the Autism Society of Minnesota or just generally online about creating an easy little story where you tell the story with the child as the main character of an upcoming experience, and sort of saying: This is how you're going to be successful at school. So what does it look like each day? It's okay to put in little hooks in there about like, it's okay to feel nervous. It's okay to take your time to get used to it. But this is a place where you're valued and celebrated. You're going to do a really fun job at school. Just kind of giving them all that upfront visualization of what it looks like to participate positively and be accepted into a space. We love when kids are prepared with things like fidgets or comfort items. We love when they're familiar with really well-utilized tools like the Five Point Scale, which is, how's my body feeling today? Am I kind of low and tired and bored? Am I nervous or frustrated or overstimulated? Am I terrified or furious? That sort of range of emotions that we all have? Can we start to talk about those things so we can help place those kids on a scale to say, Oh, your body looks like you're at a three today, you're gonna need a little time to relax before you try something new because we want to get your body down to a two or one so you're feeling nice and calm and ready to get started. That's my first category of things you can do to get ready. How am I doing? Are you bummed you invited me on...am I talking too much?

David: No, this is incredibly informative. This is great.

Ellie: Well, with with no questions or confusion about that one, the other thing that I want to talk about--and a shout out to all the parents and caregivers that take on the super important role of advocating for their kid, in every space they're a part of. We're thinking of you, we know how much you love your child. I want to talk to you a little bit about what we call advocacy- or coalition-building. Meaning, who's going to be on your team that supports this child in school. Of course, it's the teacher and the teacher's aide but maybe it's some other key staff. Maybe it's a really cool lunch lady or somebody who works in the cafeteria. Maybe it's a great bus driver that's part of the transportation to get to school. There are multiple team players to make the experience of your child as calm and as great as possible. We like to do some joint advocacy and the parent version and the kid version can look a little different. I've known so many parents who've put together information sheets; that's basically a condensed version of the things that go on an IEP. An IEP--that educational contract--is big and laden with all kinds of language. It's a really important tool but it might not be the fastest and easiest way to truly know a child. So to put a little information together that says, here's what my kid is great at; here's what they are really excited about; here's what makes them especially nervous or frustrated; here's what they look like when they're on that cusp of nervous or excited or frustrated. And here's what we do at home to prevent or ease those types of experiences. That's a goldmine, you know; that's a gold mine. And it shows a real investment to those other team players like a teacher or a bus driver. But here's the cool part. I think that a kid can also participate in this get-to-know-you activity in a way that starts to foster their own self confidence and their kind of desire to advocate for themselves. We love to see kids make things like this, too. They don't have to make it in an adult way. They can make it in a kid way where they talk about what's special about me. What's my favorite things. What's something that you can ask me that I'm really good at or that I love to talk about. What are the things that comfort me, like my pets at home or my favorite toys. Having a kid make a kid version of it, I think is a really special way to get both people into the mindset of getting ready for that new environment. If your child uses a communication device or communication supports, you also would love to see good instructions on how to use that or setting up a meeting to make sure that everyone involved knows how to use those tools. And then finally, this is a little bit much and it's okay if you don't have this quite right by the beginning of school. But if your child does have particularly high behavioral needs--meaning they get overwhelmed or overstimulated or frustrated or scared at certain points and you expect that there's going to be those behaviors where they need to take a break--being really clear from the beginning about what those breaks can look like, when to take them, and feeling comfortable that you have a shared idea with that team of what are we going to do when this kid inevitably has a little struggle? Because we all struggle those first couple of weeks of school, it is okay that there is a period of time where we're all adjusting and it doesn't need to go perfectly. There's just no such thing.

David: You know, Ellie, you said something really important in there that about asking the child as well. I remember a former colleague of mine, many years ago, told me that there's one thing that we always forget. He said that every child with a disability at their earliest possible age, the first words that they should be taught to speak is: I want, I don't want, I like, I don't like. Because typically throughout life--for a person with a disability in particular--we don't ask, right? I'm really glad that you emphasize that point of not just giving the parents the opportunity for that input. But ask the child as well, because they can be incredibly informative,

Ellie Wilson: Of course, and it's a hugely important skill that will generalize across a lot of different parts of their life as they get older. Developing that agency to say, I don't like this or I need to take a break from this, is something that's really important. One thing we always say at the Autism Society is that breaks should not be earned, they should be built into the schedule. And this is the kind of way that we can start advocating for, this is just what an average day should look like when a kid says I need to take a little break because this is getting too hard. We got to listen, we got to work as adults around them to really honor what it is that they bring to the table, positive or a need for support.

David: It's a great point, it's a great point. Good.

Ellie: So if you'll indulge me, I have only one more category. I probably could have come up with about 60 more but I want to make sure your listeners actually enjoy this. So let's talk about this. The other thing it has to do with routine building. This is really where we can hammer home routines do not just benefit autistic people, there's all kinds of research that shows that kids of any background and any level of need respond beautifully to good routines. And that doesn't mean that there's no room for flexibility or spontaneity. But especially when you're trying to prepare for what you know is going to be a particularly anxious time or particularly big transition, routines can be such a good trick up your sleeve. So what's your routine look like? You know that the routine during the summer looks a lot different than the routine when we go back to school from what we do to get ready in the morning to what we eat and who we see and where we go to what we do when we get back in the evening. Plus, there's logistical things. Like many people who use medications to support parts of their disability may choose to go off those medications in the summer and then may choose to go back on them again in the fall. I'm not advocating either way. I'm just saying that's a super common thing that a lot of people do. So just remembering that you don't want to start that routine on the first day of school. You want to give yourself a couple of weeks. I know that every kid on the planet will resist having to get up early in the morning if they don't actually have to. So I'm not saying you have to do a dry run of a school day, every day. I think that's an unrealistic expectation for any kid out there. And for the kids that would ever listen to this: I would not do that to you. But here's the thing. Having things like countdown calendars where you might be crossing things off as you approach a transition. And I'm going over the kinds of routines that you're going to have in the morning and including those in the social narrative that we already talked about. So a kid really understands what those steps are; having good visual supports for those routines, meaning can you make a little laminated checklist or a little paper that you hang in the bathroom mirror that you go over? That's like, what are those steps when you're getting ready in the morning before school? That you are also thinking about time home from school. I have known so many families that say, you know what's hardest for us? Not school but right when a kid comes home from school, because they've been working hard all day to do their best and then they come home and they kind of fall apart because they've been expending so much energy on what happens at school.

Ellie: There are there are things with autistic kids called masking and they don't always know they're doing it. But it's this phenomenon where they try in certain settings to just do the best they can. And then they come home and they take the mask off. What we want to acknowledge is the effort that it takes to do that, we want to relate to that and empathize with it. And make sure that we understand that a kid may need it to be part of their routine to come home and decompress with the things that really helped them. For some kids that's quiet, uninterrupted preferred activity time. And for some kids, it's big activity, big gross motor running and playing because they've been sitting still all day. But making sure that the routine doesn't stop at 2:45 or three o'clock when the school day stops but that it also includes some of those steps in the home. I think that could be really helpful. And I think it could help establish realistic expectations for parents and babysitters and PCAs, as well, that like, hey, we need some time to chill when we get home. We all need that, don't we? I know that I do.

David: Yes, absolutely. I think those are all really good points. And you know, on a broader sense--in addition to everything that you've already shared--are there other resources at AuSM that parents or individuals with autism might find really useful? And maybe just a general description of who AuSM is and what kind of services that you provide there at AuSM.

Ellie: Oh, Dave, I'm so glad you asked. I'm so glad you give me the opportunity to talk a little about AuSM. So anybody, any member of our community--whether you've been formally diagnosed or not, whether you are any age, whether you live in any part of Minnesota, or whether you have complex disability or rather subtle disability--it doesn't matter to us, we're excited to meet you. You can get to us through social media or through our website at www.ausm.org. AuSM exists for two big reasons. The first reason is to be a direct resource for autistic people and their families. That means we do provide some direct services. We provide mental health services, information and referral classes and social experiences. You know, camps, community building events, there's so much that we do that can help you get hooked into tips and tricks, good resources, or frankly, just people who get you and understand you and want to show you some love and support. So that's who we will always be. That's who we've been since 1971.

Ellie: But I also want to call people's attention to the fact that AuSM really does our darndest to work behind the scenes to make Minnesota the absolute best place for all autistic people to live and thrive. And that means engaging people that aren't autistic too, because a lot of people don't always understand how relevant their intersection is with the disability community. So we're working with educators and teachers. We're working with police and firemen and women and emergency responders. We're working with librarians and people who are on daycares and museums. As Dave knows, I'll talk to anybody who will listen to me, frankly. So we're just trying to get to a point where we're chiseling away some of the misconceptions or stereotypes about autism. And we're trying to get people good solid information and also give them a little bit of enthusiasm and agency over the idea that they can impact their home, their neighborhood, their field, their job, whatever. It is to be inclusive and conscientious of people with disabilities, because it's a role we all have to play. And you know what, it's fun. It's the most fun I've ever had. That's why I love this job. We like to energize people to take on the spirit of inclusion with us. And those are really the two big things that AuSM is here to do.

David: Great, wonderful. Jason, any final questions that you might have for Ellie, or thoughts?

Jason: I was gonna give Ellie one more chance to send out tips and tricks--something that we like to do on the  Champions of Homecare Podcast--but tips and tricks for families who are navigating life with autism, we've kind of cornered you into back to school for your three big things. But let's open it up: Any tips or tricks that you want to share?

Ellie: I know that this is probably meant to be short. Here's what I will say is, like we talked about today, things like preparing for new experiences, creating new routines, and creating a coalition or a team sense and engaging in that out across multiple members of the family and multiple team members in any community. Those things are true, whether we're talking about school or anywhere else, to be honest. At the Autism Society, you can also expect to learn about navigating challenges related to sensory processing or what we call executive function, which is the ability to organize and do the tasks that we all need to do to get through the day. We help with things like social supports and community access. The tips and tricks are probably too many to talk about here. But just know that if you are able to initiate an outreach to AuSM--whether that's through phone, through email, through social media--people come to us sometimes with the most articulated specific question. And sometimes they come to us just in a state of, I'm overwhelmed, I don't really know where to start or what to do. We welcome everybody with open arms. So whether you're looking for one specific tip or trick or whether you're just like trying to take a deep breath and you need a good teammate, AuSM is here for you. In part because of great support from Accra, I just always want to say, shout out to Accra, for being a conscientious and intentional supporter of this community. I know that you have many, many clients that you care for deeply. But I know that your efforts extend beyond those unique clients to the whole community. And we just love our partnership with Accra. I know that we're all doing the same work together, we all have that same vision that we're working towards. So however you find us--through Accra, through the website, whatever it is--we're just happy to share this community with you.

David: Well, Ellie, thank you so very much for the complimentary comment that you, I was going to say the exact same thing about how much Accra values our partnership with AuSM, as well. Not just in sharing some of those community events and spreading the word about the valuable services that are provided both by AuSM and by Accra, to this wonderful community but also how much we really genuinely value our collaborative relationship as well, and the work that you do and the enthusiasm that you bring to it. Ellie Wilson, Executive Director of AuSM. One of my favorite people in the world. She's a marvelous, enthusiastic, energetic leader. I always look forward to great opportunities to work alongside Ellie and in reference to Accra as well as to AuSM. So thank you so very, very much for being here with us this morning.

Ellie: You know, you're making me blush, but I feel the same way. So it's a pleasure to hang out with you. I think this podcast is so cool. I hope that a lot of people listen to it and use it as a, you know, a little spark to create a new connection and reach out for anything they need. We look forward to being supportive.

David: Well, I thank you again. And I know that the information that you shared this morning during our conversation will be incredibly valuable to parents as they prepare to get their kids ready to go back to school and for those children who are preparing to go back to school because you gave tips and suggestions and ideas for both groups. So I again, thank you so very, very much for being here with us this morning. And hopefully we'll visit and talk again real soon.

David: Okay, well, we want to thank Ellie again for joining us and sharing all that wonderful information about misperceptions of people with autism, how to prepare for school and a return to school for not just the parents but also for the children. I think she made some really valuable points and suggestions in her comments. So we're really glad to have Ellie join us today. Now moving into news and views, Jason.

News & Views

Jason: Yeah. We'll start off with something that's pretty relevant, given the subject matter of today's podcast. In late July, members of the US House of Representatives introduced a bill that would officially established July as Disability Pride Month.

David: Yeah, and you know, and that's particularly important. I'm so glad you shared that, Jason, because approximately 61 million American adults have a disability that impacts their major life activities and 3 million American children that have disabilities, as well. That's almost 20% of the US population. That is the largest minority population in the United States today. Sixty-one million Americans. So an official observance of Disability Pride Month will encourage, I hope, appropriate celebrations and activities and get more Americans to take an active role in the prevention of discrimination against people with disabilities. I tell parents all the time, when they get resistance from school districts or from other social service providers, that it's not about the disability, it's about discrimination. That's really what that D is. So thank you for sharing that. Jason. I think that's really important. I think we have some update on Medicaid enrollment renewal, as well, right?

Jason: This is something we've talked about on the first couple episodes of the podcast but it's so critical for the Medical Assistance in Minnesota Care enrollees. So we want to remind them that they must renew their coverage. That requirement was put on hold during the COVID public health emergency. But that's come to an end, now.

David: And that's critical because this applies to a lot of people. There are 1.5 million Minnesotans--not nationally but just in Minnesota--1.5 million Minnesotans that are covered by Medical Assistance and Minnesota Care programs.

Jason: If you are one of those one and a half million Minnesotans, you can go to AccraHomecare.org. There's a banner at the top of the screen there that you can click that says Medicaid Enrollment Renewal Info; just click there, follow that link. Then you'll be able to figure out when you need to review your coverage, how to update your contact info, and other key information about the renewal process.

David: Medicaid assistance and Medicare enrollees will then receive a packet in the mail when it's their time to renew. So make sure you complete and submit that packet right away because you don't want your coverage to lapse. I guess it's time to thank everybody for tuning in again. We really appreciate the opportunity and we hope that you found today's podcast informative and enjoyable.

Jason: In my humble opinion, I think it was the best one yet. And all the credit is due to Ellie for what she brought to the table. All the information that's going to help out families who have an individual with autism.

David: Absolutely. So make sure you follow and review the Campions of Homecare wherever you get your podcasts. Jason, where would they get those podcasts?

Jason: It's expanding. You can still watch us on YouTube. You can catch it on Spotify, Apple Podcasts, Google podcasts, and soon wherever you get your podcasts. We continue to add on new platforms.

David: Wow. We're gonna be all over the place. All right. Well, thank you, Jason. I think this was another great podcast. And as always, it's a pleasure to be here with you co-hosting and thanks for everything you do behind the scenes, as well.

Jason: I can't wait for the next one. Thanks, David.

David: Me too. All right. Bye, listeners.