Autism Awareness in Health Care, with Sandra Dennis & Silvia Gil | Spectrumly Speaking ep. 102

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IN THIS WEEK’S EPISODE:

(25 mins) In this episode, hosts Haley Moss and Dr. Lori Butts look at UHealth Jackson Urgent Care Centers in Florida. They recently became the first in the state to receive an Autism-Friendly distinction, with the guidance of UM-NSU CARD. They are joined by two guests: Sandra Dennis of UHealth Jackson, and Silvia Gil of UM-NSU CARD.

For more on UHealth Jackson: https://jacksonurgentcare.com/

For more on UM-NSU CARD: https://www.umcard.org/home/

 

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Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.

For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com

Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com

CLICK HERE FOR PREVIOUS EPISODES

 

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EPISODE TRANSCRIPTION:  

 

 

HM:

Hello, and welcome to Spectrumly Speaking. I’m Haley Moss and attorney, author, artist and I’m autistic. Today I am joined here by my co host…

 

LB:

Hi, I’m Dr. Lori Butts. I’m a psychologist and an attorney.

 

HM:

How are you doing?

 

LB:

Hectic week. How about you?

 

HM:

Also definitely hectic and trying to stay on track and on schedule with everything.

 

LB:

It’s been challenging this week for me, I’m sure. I hope — I know you can relate.

 

HM:

I feel like there’s always something going on. And for some reason, I always think that the end of the week will mean that it’s going to slow down and it’s just going to like, you know that I just starts off on Monday, then it’ll like hump out and get really busy by midweek. And then the end of the week, it’s quiet again. And that’s not what this week has been up to.

 

LB:

Today feels like a Monday, I woke up in my iPhone, updated. But it knocked me out of all my work things. So I’ve been trying…

 

HM:

I tend to schedule a zoom meetings and I freak out. Yeah,

 

LB:

I don’t know, my schedule. My phone is incorrect now. So it’s interesting how dependent we become on these little devices. But it’s when things don’t work, it gets a little challenging.

 

HM:

It’s so true, though, especially because I don’t know, like, I used to have a wall calendar for a lot of this stuff. And I can’t put like a zoom like on a wall calendar. No.

 

LB:

yards, I always have had a wall calendar. That’s so funny. And I’m a lot older than you. So it’s always so helpful to see everything kind of visually for me on the wall, and then to be able to cross it out when it’s done and things like

 

HM:

Exactly. I need the visual, and I like being able to cross it out as it’s done. But I can’t put all the extra information in there.

 

LB:

Exactly. And you can’t log into a zoom meeting.

 

HM:

That would be the dream.

 

LB:

Hey, maybe we can invent something. Yeah, a smart wall calendar repressor. We just touch screen and it opens up your zoom.

 

HM:

Yeah, see, I always keep the wall calendar on my desk because I like to touch it and poke at it and obviously amend it constantly. So the good old days. Yeah. But at least on today’s episode, we’re forward thinking. Yes,

 

LB:

Yes.

 

HM:

We’re talking about something exciting. And we’re talking about the future a little bit more. So that’s something you know, to move past wall calendars, right. So today, we’re going to be taking a look at something in our backyard here in Florida. We’re going to be looking at UHealth Jackson, urgent care centers here in the South Florida area. They recently became the first in the state to receive an autism friendly distinction with the guidance of the University of Miami Nova Southeastern University Center for Autism and Related Disabilities. So to help us out today, we are joined by two guests. You heard right, two guests, not one, joined by Sandra Dennis of Jackson, and Silvia Gil of UM-NSU CARD. Welcome to the show.

 

SD:

Thank you so much. I’m glad to be here.

 

SG:

Thank you, Haley, and Lori for having us over.

 

HM:

So excited. And to get us started. I’d like to start with you, Sandra. And can you tell us how this initiative at IU health Jackson got started?

 

SD:

Sure. So it all came about from one autistic patient that we took care of in our urgent care in country walk. The father was really anxious. The child had never been able to get a proper assessment or evaluation by the physician because he did not like doctors and he would become really irritated and and aggressive. So they had a wonderful experience that country walk I had one of my nurses there who was very comfortable with autistic children. And we were able to do everything we needed to do for that patient. The father was elated. And he wrote this big letter to our CEO thanking us for, you know, being able to provide his child with a positive patient experience and how incredible it had been. It was the first time in his life that he had had that experience at the doctor’s office with his son. So we decided why don’t we look further into this and see if we can incorporate this into our every day service. So that’s how we contacted Sylvia into getting our staff trained and getting everything else that we needed to be able to target this population that became obvious. There was a huge void in the community for health care for autistic patients. So that’s how it all came about.

 

LB:

So Sylvia, how did UM and Nova get — what is the process of this collaboration?

 

SG:

So kind of as Sandra was saying, the beauty of this collaboration is it came from such a positive experience. And so when Matthew pincer was able to receive See that letter that feedback, the staff saw what a difference it really made in a patient’s life. Matthew pinzer actually reached one of our former board members, Darlene jheel. And Matthew was connected with Dr. Michael Alessandra, our executive director. And we really saw such an impact by having this collaboration. So with that connection with Matthew with Michael, we were able to work directly with Jackson, health systems, we were able to do on site training, we were able to not only just train the staff one time, but really develop and foster a relationship where we really provide that ongoing technical support with their stuff,

 

LB:

just as a follow up it with that with that model, or do you think that you all would be able to replicate this and other systems?

 

SG:

Absolutely. We have started, if you look at you car.org, we actually started our autism friendly initiative, because we saw what an impact it would make in the community. As you guys may know, young card serves over 13,000 families in the community. And so what we noticed is we can make an even greater impact if we can connect with our community partners. And so if you go onto our website, any community partner, medical organization, can really register and receive these services at no cost. We also have worked with museums, Broward Art Center, the dental offices, and we’re really seeing that kind of an impact by partnering with organizations.

 

HM:

That’s really great work. And full disclosure, I am on the constituency board at UMD Nic card. And you mentioned as well that we all serve over 13,000 families in the area. And for those of our listeners who aren’t local or might not be aware of what car does, can you share a little bit about what our organization does at umsu card and what you’re also doing for the autism community a little bit broader as well. So then just folks are a little bit more aware, including beyond just the autism friendly initiatives.

 

SG:

Absolutely, Haley, and thank you so much for your service and your support for you know, being on our board. And so what our organization does is any family that has an autism related, you know, disorder or on the autism spectrum, they can contact our offices, and we provide one on one case management. So the family receives guidance. So as you may know, you receive a diagnosis and you feel lost, you feel you’re not really sure what schools do, I go to what therapies. And what we do is we really try to connect, I always say card is kind of like our family, and we build our own community. And we will connect you with all the available resources and tools. And again, we do that at no cost to the constituents. Not only do we provide that one on one service with the families, we also have ample opportunities for groups. So we service teens, we do a teen time, we have social gain, where there’s some social opportunities for our teens and adults, lots of trainings for our families and professionals, we also really focus on employment. So really supporting our adults in the employment just like our job seekers and job club as well as the adult support group. So really, there’s something for everybody. But it is a community that is going to be supported. And we really guide you throughout the lifespan. So anyone at any age can access our services at no charge.

 

LB:

It’s amazing, kind of shifting back to the project that you all are working on together. Can you tell us what the training is like for the doctors and the nurses in house in the, in the in the care centers and the patient care centers? What what kind of training the staff gets?

 

SG:

Sure. Um, so the way the training is, and this goes for all of our autism friendly partners, is we really look at it as an individual basis. Sandra was so helpful in kind of letting us know, what is currently going on, what are some of the issues that they have? What are the goals that they have for their staff? And so Sandra, and I kind of work together to create real strategies, you know, like preparing our adults, you know, or any patients for their experience. So utilizing visuals or social narrative, and all of that is available on their website. And so we teach the staff how do we use these tools, how to be patient, compassionate, understanding, really great ways of communicating with the patient. And their team has done an amazing job adapting all the things that they’ve learned, I traveled to every single site that they have all of their locations, bright and early, the staff was there before they even started their shifts. And we had really great discussions, as well as we’re going to do some follow up trainings on you know, of course virtual now.

 

HM:

And what has been the response so far?

 

SD:

I can answer that. We haven’t had we haven’t had much. Um, our volumes have been really low due to COVID. And so we haven’t gotten I think we had two autistic patients come through so far in all the in all the urgent care centers, but we get very positive feedback, we’ve set up our room really nice. So we have a specific room that we’ve designated as the autism room. And we’ve installed a dimmer so that we can put the lights low inset a nice atmosphere, we have a really nice light that reflects really beautiful pictures on the wall, and it plays music, very soothing. Instead of an exam table, we have a beanbag so that the patient can relax in a beanbag and not feel like they’re at a doctor’s office, we also have specific toys that that they would like very tactile stuff. So I think we set up a really nice environment for them. So they feel very relaxed. And that way, when the doctor or the staff comes in to evaluate them, they’re already distressed, we also try to expedite them through the registration process, so that they’re not sitting outside in the lobby, stressing out about what’s happening, I’m in a strange place. So we encourage the parents to call ahead of time, you know, to let us know that they’re coming, if they’re coming in with their child, that way, when they come in, we can expedite them straight into the room so that they’re not getting all this extra stimulus, outside with other patients and you know, different noises that you can hear in an urgent care center. So I think that whole experience has been very positive for them. Thus far, we’re excited for the volumes to start going up again, so that we can start seeing a lot more of these patients and and really provide them with this positive experience, maybe, maybe this experience in the urgent care will change their entire outlook, about what it’s like to go to the doctor’s office, because up to this point, they may have had very negative experiences. So we’re very excited about that.

 

HM:

I’m excited for for y’all too, especially because I know like for me, sometimes going to the doctors can be very fraught, because I feel like not all healthcare providers understand autism, or I won’t disclose because they’ll treat me differently, or expect that there’s going to be a support person with me, or they’ll just act like I’m not competent to make decisions for myself. So sometimes I definitely can understand why we need those trainings to especially from sensory perspectives, and even just making sure that we treat patients who are on the spectrum with dignity as well. So thank you for the work that you’re doing in there. And how can listeners find out more about these initiatives?

 

SD:

Well, for us, you can go on to our website that you have Jackson, Urgent Care website, we have information on there, you can also call any of our of our clinics, and we can provide you information, we have brochures that we have put together to give more information. So we’re inviting the the autistic community to come and see us, we can give you great care and also with the sensitivity that an autistic patient needs.

 

HM:

And so Silvia, how can we find out more about card as well.

 

SG:

So the best way to find out about card is going on our website at www.umcard.org. And once you’re there, you’ll be able to find out how to register for Card Services. If you’re an organization that’s interested in our officer friendly initiative, you can submit an application and we can, you know, start a project with your you know, with your organization, you can also register for our newsletter, that’s the best way to find out what are the available groups and trainings as well as the other community supports that are out there for you. So yeah, the best way is just going on our website and seeing what we have there.

 

HM:

That is very cool. And that’s so helpful for anyone who wants to know more… So what we want to talk about is how we can keep getting other health care providers and health systems, organizations, businesses and others to understand the need for acceptance and inclusion training when it comes to autism.

 

LB:

My biggest — I mean, how this is so great, it’s so exciting. And and I just how do we get more organizations to do this? It’s really, I mean, it’s so it’s such important, it’s such important work, and it’s, and it seems so obvious, and almost simple, just kind of logical. You know, but but big organizations and big healthcare service providers or, you know, just like any other bureaucracies, right? So I can imagine it’s a great it’s a great idea. But then the implementation requires a lot of buy in from different organizations and things like that, and people just necessarily don’t like change generally. So how can we spread this?

 

SG:

Yeah, I think it’s a lot of what you said and I’ve gone door to door organization organization really kind of just sharing this information and what I really Notice is, so many people want to do this, they want to support create an inclusive environment. But sometimes they feel really stuck and say, You know what, we really can’t do this because it’s too expensive. You know, we don’t want to change our ways, you know, it’s going to be too much work. And so for us and our organization, is we kind of make this so simple. And we tell you, don’t worry about it, we’ll be there with you along the whole way. And the best part is, it’s at no cost to the organization. So you know, they’re always nervous about how much money are we going to spend on this. And so we really try to create that collaboration, where we make it simple, where it’s not only going to be better for the community, but also better for your organization to create that inclusive environment. As we know, there’s a large autism community out there. And I feel like every autistic adult child family should have every opportunity to participate and engage in our community. And this is the way

 

HM:

Absolutely, and I think this is really important, as well for small businesses, because I think about when it comes to large companies and larger businesses, that obviously has to be compliant with, say, the Americans Disabilities Act, and they have to make reasonable accommodations, that they’re kind of required to do these things from a compliance standpoint, right. So I think a lot about small businesses that might not have those same, always have the same obligations, at least, maybe I’m just thinking about employment law at the first like moment and thinking Wait, maybe, I mean, everywhere has to be physically accessible. But I think that as well, that some of these things from a compliance standpoint look a little bit different. And I also wonder, I guess, like, when it comes to small businesses, I guess they just see these things as sort of like this thing that needs to be done just to like, you know, not get in trouble. And I wonder how we generally you’re able to just empower people to feel like this is something that is the right thing to do, it’s the only thing to do, and it just improves everybody’s bottom line, like you said, it doesn’t cost them anything, and that they’re being part of the community, and they’re engaging with all members of our community and having accessible businesses and allowing folks that just genuinely participate in all aspects of community life is something that’s so so valuable. I mean, in the terms of the of the health care worker, I think, for us, the training actually helped us as well, it helps us do our job more efficiently. And, and less stressed. Because usually, when you when you have a patient that you struggle to communicate with, it’s very stressful for for the healthcare worker, as well.

 

SD:

You know, we want to convey a message, we want to convince this patient, that what we’re doing is to help you and to make you feel better. And when that communication is broken, it’s really stressful for both parties. So I think this training has been extremely helpful and beneficial to my staff, not just the patient. So it puts both parties at ease that we are equipped, we are trained, we know how to handle these situations, so we can handle them in a more efficient way. In the future.

 

LB:

You know, that’s such a good point, when we talk about this a lot, just on a, you know, on a broad base of topics. And it’s, you know, somebody with autism can be viewed as, as oppositional or unfriendly, or, or, you know, a whole host of negative connotations. But with, with your mindset, the understanding that it’s not purposeful, that that it’s not, you know, it’s just, it’s a way that somebody is communicating that really shifts the experience for the, the neurotypical person who’s who’s in the situation, as opposed to thinking that somebody’s being a jerk, for lack of a better term, as opposed to somebody who has, you know, has a has problems processing information, and they’re having difficulty communicating, it really does come this situation, it changes the dynamics. And that’s, that’s such a good point. And that’s across the board. Right. I mean, that’s, that’s us in communicating at the grocery store, you know, from with people that we interact with on a daily basis. And and not just assuming somebody’s just being a jerk, but somebody just is different. And that acceptance, it needs to be across the board, not just in healthcare systems, but in all of our interactions with other people.

 

SG:

Yeah. And going back to Sandra’s point, it’s really about that education piece. It’s the not knowing it’s the fear of how do I communicate? How do I engage this individual, and when you have the right tools, it makes your job easier, it makes that patient the, you know, consumer, just being able to completely integrate into the community. And that’s what our goal is to provide that education. And the more we can get the word out, the more we can show what an amazing impact it can have for everybody. I think hopefully the more buy in will get

 

LB:

absolutely 100% I mean, it’s just so much. And like what Haley? What you’re saying in small businesses? You know, again, going back to this education piece, people aren’t thinking about it if they’re if they’re, if their business isn’t geared towards the artistic community say it’s a business like we’ve talked about gyms, how gyms before COVID

 

HM:

Oh, my God, so inaccessible in so many different ways. It’s not even funny.

 

LB:

Right, right. So they’re their target, you know, they’re not thinking about being accessible. They’re thinking about how do we get the club atmosphere? And how do we get the lights and the you know, and so it’s not, it’s not that they’re trying to discriminate purposefully, it’s just that it’s just not on their radar. So that education piece is what you know, hopefully, through our podcast, and through all of the things that all of us on this, you know, are talking about, just that day to day education of just the broad patient of community members, to have them have sensitivity and inclusivity, just in a day to day basis is so important.

 

HM:

Absolutely. And I think what it also comes to health care providers, I mean, I look at it with a different set of eyes as well, because I know what it’s like to have providers that don’t care that definitely weren’t trained, or definitely just don’t treat you properly because they know or because they don’t know or because they don’t hear you or see you as fully adult. So I definitely understand that frustration, I know what it’s like to have a PA put in your chart that you were diagnosed with autism in childhood and look at it as just a childhood problem. When you’re in your mid 20s. I’ve had, I’ve asked doctors to just explain what they’re doing in lifetime. Like, if you’re going to give me a shot or a vaccine, just let me know you’re going to do it like, don’t just let like just because I consented to it doesn’t mean like, please let me know what you’re gonna do. Like, let me know what you’re putting in me, let me know that you’re gonna stick me in like three seconds or something, don’t just like, assume that I’m okay with it. Because maybe I’m gonna get scared, maybe I want to have a stressful or stem at the same time. Like, please just like, communicate with me too. So I understand what it’s like not to have those things. And that makes me eternally grateful for the work that y’all are doing.

 

SG:

And we’re so appreciative Haley for advocates like yourself, and every single parent that has barged down every obstacle to make sure that these opportunities are available. And the fact that you’re sharing with us, all of these things, that’s what we embed into our training. So Sandra, her team already know that stop show do. And just by doing some simple strategies, like talking about it, and communicating with you like an adult, because we really, you know, focus on Adult communication and how to work with it. Um, you know, you it just makes your experience so much better.

 

HM:

Mm hmm. I think the presumption of competence is the big thing that seems to get lost, is there still ways to communicate very adult things, either in plain language, or just to spell it out in some way, shape, or form and not just treat us like perpetual children?

 

SD:

I agree, I think I think there’s a misconception that just because the patient is autistic, that you have to treat them like a child that they won’t understand what you’re saying, or, you know, and and there’s a huge spectrum, you have some that don’t understand, but there’s a lot of them that are perfectly functional, that deserve the respect and the dignity that everybody else deserves. So you really need to evaluate, you have to you have to treat the individual, you cannot realize just because there’s an autism diagnosis, you can’t just generalize and think that everybody is the same.

 

HM:

I think that’s a really important point too. And I think that’s a great way to kind of wrap up this discussion to is that you can’t generalize and to treat everybody, no matter where they may fall on the spectrum or how many support needs they may have, whether or not they can go to an appointment independently, or anything with that respect and dignity that we all deserve. As human beings. I think that’s such a really powerful message to send. And I think that kind of highlights the importance of these trainings and making sure that we understand acceptance and inclusion in healthcare and environments and it within our community and also within our businesses and other organizations. So I’m really glad that you brought that up. And, again, we are so grateful for both of you and your time. Thank you again to Sandra, Sandra, Dennis of you health and Jackson, and to Sylvia Gill of umsu card. You can visit both of their websites to learn more about these initiatives on what they’re doing to the autism community and what they’re doing here in the South Florida area. If you’re looking for me, you can find me at Haley at Haley moss dotnet and on Haley, I’ll start on social media. And of course, different brains can be found at different brains. org and check out their Twitter and Instagram at DiffBrains. And don’t forget to look for them on Facebook.

 

LB:

I can be found at CSIexperts.com. Please be sure to subscribe and rate us on iTunes. And don’t hesitate to send questions to spectrumlyspeaking@gmail.com. Let’s keep the conversation going.