@Autism_IRL is an Instagram account created by WEGO-award-winner Dana Kelsey, who works alongside her parents as a full-time caregiver for her autistic adult brother, Robert. Dana has a background as a behavior analyst, and has been working professionally with the autistic community for 10 years. Her passion for this line of work was sparked by a personal tragedy involving Robert’s mistreatment. In 2017, Dana made the decision to leave her professional career and move back to Central New York to assist her parents in caring for him. Robert is 34 years old, loves Sesame Street videos, Little Debbie snack cakes, Disney movies, and pepperoni pizza. It just happens that he also lives at home with his parents. Robert has had a difficult journey since entering adulthood, but his resiliency and loving family have enabled and encouraged him to continue living a joyful life.
Tune in as Dana shares:
- how Rob was first diagnosed with autism spectrum disorder at 4 years old
- that support services when Rob was first diagnosed — in the late ‘80s — were far from comprehensive
- that her parents were lured into many biomedical therapies when Rob was a kid — none of which have been proven effective
- that so many treatments for autism focus on the condition as a defect — and that her family never subscribed to that POV
- that Rob is semi-verbal, and his family has learned his communication tools
- that at 21, Rob was involved in a traumatic assault incident that left him with PTSD— and that he and his family only began to overcome 10 years later
- that in Dana’s household, her father is the sole source of income — and that COVID has caused a lot of anxiety as a result
- the importance of maintaining your mental health as a caregiver
- how prejudice and privilege have affected Rob’s movements through the healthcare system
- that the adult services area of autism care is far from ideal
- that vaccinations and ABA are very divisive topics in the autism community
Lauren: Okay, guys, thank you so much for joining us. I am here today with an autism patient leader and caregiver, Dana Kelsey. You may recognize her from her Instagram feed @Autism_IRL where she chronicles the day in the life of taking care of her brother, Rob, who lives with autism. And she's a WEGO Health Award winner. We're going to talk all about it. Dana, thank you so much for being on the show today.
Dana: Thank you so much for having me.
Lauren: Oh, it's such a pleasure. We've been saying how nice it is to just get chatting. We got the chance to get to know each other back in October when we were both WEGO Health Award winners, and it's just lovely to connect in the midst of this pandemic.
Dana: Yes, absolutely!
Lauren: And also, I love getting the caregiver perspective on chronic illness and invisible conditions. So this is a really fun discussion to have with you today. And for those of you who watch Autism_IRL, the videos that Dana posts … I mean, especially right now, these are the videos we need right now. If I don't say so myself, I mean, there's so much joy that you capture on a daily basis, even in the struggles. And Rob is just such a happy guy, and clearly well taken care of and well loved. It just goes to show the love that's in your family and it's a really nice thing to have a glimpse into that, At all times, but especially now when we're all feeling a bit distant from the world in the midst of the COVID pandemic. So thank you so much for sharing all of that with us.
Dana: Well, thank you. That's so kind. Rob is a pretty charming guy all on his own.
Lauren: Yes, he's very charming. He's charming all by himself. But it's really nice to see the interactions that you guys all have together. It's just fantastic. So I'm excited to talk more about it. I figured we'd go back to the very beginning, as we do in all these interviews, and if you could tell us when and how your family first realized that Rob had something going on, and what steps you've taken to help him lead a full life.
Dana: Sure. From what I've gathered from my parents, they said it really started when he was around two years old.
That's when they noticed a delay in his speech, which is something pretty common with an autism diagnosis.
One of the first things that a lot of parents recognize is delayed speech. So from there, they went to a speech pathologist, they followed up with their pediatrician, and two years later, when he was four years old, he was officially diagnosed with Autism Spectrum Disorder (ASD). From that point, working with some doctors in the area, they were able to get in touch with a few agencies that offered services. Unfortunately, there was a lot of waitlist. So my family ended up going down to Philadelphia; there was an institute down there that specialized, I think they referred to it as, brain-injured children, and autism was lumped into that group.
Lauren: That’s very interesting. That's a real indication of the time in which that happened.
Dana: Yes, yes. And that was the problem, too. My brother was born in 1985. And back then the cases of autism, I think it was like 2 in 10,000. And the number today is one in 54 diagnosed. So the doctors themselves didn't have a lot of knowledge about autism; my parents weren't given a clear direction. They were, like, “Oh, well, maybe we know of this place an hour away that could help you.” “Oh, we think we've heard of X, Y and Z.” There was never a clear cut path of, “Okay, your son has autism. Here are the steps to follow.” The doctors were almost learning in conjunction with my parents. Which is scary. You're diagnosed with this disorder, and you have no help. You have no idea what to do.
Lauren: Are you older than Rob; were you born before or after?
Dana: No, after; I'm two-and-a-half years younger than Rob.
Lauren: Okay. So you were born around the same time that he was diagnosed?
Dana: Wow. I think I was a year old, a year-and-a-half old when he was diagnosed. So my parents had to kind of find their own way. They went to some conferences and tried to find anything that they could to help Rob. And unfortunately, some of the paths they went down weren't the most effective.
They got sucked into a lot of the biomedical treatments, which don't have a lot of evidence supporting their efficacy, and some of them can be kind of harmful.
He went through Secretin injections, chelation therapy to remove heavy metals from his blood. But back in the day, it was something that was promoted as an effective treatment to help with the behaviors associated with autism. But years later, research would come out to say that's not really the case.
Lauren: Do you think it's also that the perception has shifted … that back in the ‘80s, the idea was that autism, with these treatments … that autism was kind of a mistake, Whereas now … there are people who are born with autism, and that's that. It’s not really reversible.
Dana: Oh yeah, I think back then, too, some of the bigger organizations that are known for autism advocacy were so dead set on promoting a cure for autism. These were the conferences that they got sucked into. It was the Defeat Autism Now, the DAN! conferences, and so much focus was placed on … there is something so wrong with him, there's something so wrong with him, you have to fix it, look for a cure, look for a cure. Which is awful.
Lauren: Did you guys subscribe to that in the family? Was that ever a feeling, that you guys felt like he was broken?
Dana: No, never. We always just wanted to see him live the best life he possibly could. My parents wanted to see him gain some type of communication skills, whether it was vocal speech or not, We went back and used the PECS system (Picture Exchange Communication System), with pictures for augmentative communication to try to help him find his voice. He’s semi-vocal; he can vocalize his wants and needs. He can be a little hard to understand if you're not familiar with him.
Lauren: But for those of us who watch his videos, we know his language now!
Dana: I know, right?! That’s Rob’s lingo! (laughs)
Lauren: Yeah (laughs). But it is interesting because this is another characteristic of autism, isn’t it. There's often a focus on specific patterns or words, and these become the language that … especially non-verbal communicators, or communicators like Rob who have some words that he uses and others that he doesn't … that become his language.
Dana: Yeah, absolutely. It's funny because my mom and I will pick up and know super quick if Rob says a couple of words, like, oh, he said this, but we know he means like this, and he wants this. And other people are like, "What? How do you know what?”
Lauren: It’s the same way you know with babies.
Dana: Exactly. He's just found a way to tell us, and this is what it is.
But yeah, we never subscribed to curing or fixing any part of his autism.
Lauren: You guys seem very accepting as a family. I mean, it's a real family effort, especially because in recent years, you've become one of his full-time caregivers, too, right?
Dana: Yes. I have. Two-and-a-half years ago, I left my job out in Massachusetts at a school that specializes in autism education to move back home and help my parents care for Rob.
Lauren: So when you were born, you had a brother who was diagnosed with autism and this obviously shaped your career. That you went into teaching in special education, and now are back home and and between you and your parents are really his full-time care.
Dana: Yeah, absolutely.
Lauren: It’s pretty amazing. It's why we get these wonderful insights into the day-to-day with you guys. So, does that mean that you're also, at this point, Rob's primary caregiver and advocate, or is that something that's shared among all the family members?
Dana: It’s pretty equal across all the family members. I am, technically right now, hired as his Direct Support Professional (DSP) in New York State. So I am there 40 hours a week, also implementing his community habilitation plan and the objectives that he has in his service plan. But when I'm not there, it's my parents. So it's a joint effort. It's all three of us. And my mom and my dad have been advocating for him since two years old, since they knew something was wrong. So all three of us share the load.
Lauren: Yeah, absolutely. And forgive me if this is too personal. You don't have to answer this. But I'm also wondering, especially with your parents, is there an awareness of mortality in the long-term care situation here? Rob's going to outlive them, and are they sort of going, all right, how do we make long-term care plans that are going to work for everyone, and for you that enable you to also live independently?
Dana: It’s something that we've begun to talk a lot about recently. Rob … I don't know if you're familiar with his story?
Lauren: Well, for the people who are listening … please share with us.
Dana: So following high school — Rob aged out of high school at 21 — he went into a day program for autistic adults and other people with developmental disabilities in the area. And unfortunately, he was involved in a traumatic assault incident with one of the day program staff. And it was something that took him and my family a long time to recover from. It took us probably 10 years; this happened in 2009. So we're talking, recently, is when Rob really started to kind of make some gains and overcome a lot of the behaviors associated with his PTSD diagnosis following that.
And I think a lot of those years were just so focused on survival and getting Rob back to a place of “normalcy” for him — bringing him back from this incident.
So not a whole lot of future planning was really done in that time. It was just the day-to-day … What do we need to do to get through today? How do we help Rob today? But like I said, since I've moved home, it's become a bigger conversation, because there aren't a lot of great programs in the area. There aren't a lot of great long-term options for him. Right now we're just in this weird, ambiguous gray area of: What are we really going to do?
Lauren: The pandemic doesn't help.
Dana: Oh my God, please. My anxiety related to this topic has been pretty intense. Because in our household, my dad is the sole income provider; my mom stays home to take care of my brother. So you know, either situation — if I lose one parent or the other or both parents — whenever that's going to be, I'm going to have some very big shoes to fill, all around. So it's tough. It's one of those realities though, as an autism sibling, as somebody with a sibling who has a disability or developmental disorder that requires 24-hour care … it's a tough situation to be in. But again, it's just one of our realities.
Lauren: Yeah. And right now the world's on hold in many ways. So I suppose it gives you time to sort of work through some of the anxieties, even though there's nothing you can do about a lot of stuff right now. But I also guess that when a lot of the sanctions are lifted, and we can all get back out in the world again … which could be a couple of years, who knows? … that that will be the time when you can start enacting longer-term plans, and this is sort of the time to do research and to maybe take a breather a little bit, too.
Dana: Yeah, definitely. You know, we are doing our best to stay home and find fun things to do with Rob at home. And he lives well at home. He has his little routine that he's into every day, his movies and game shows he likes to watch. So he successfully lives at home. He definitely has a lot of skills that he could gain in terms of increasing his independence. But he does okay. We’re doing okay. And that's all we can really ask for right now.
Lauren: And that’s something that's got to be frustrating, too, though because you guys had gotten him into a really wonderful art therapy program. Right before the pandemic hit, and Rob was really digging it. And of course, you can't go right now. And that's got to be hard for him, too, because he's adjusting to these changes in his routine when he was just beginning to find healing and be able to interact with new people comfortably.
Dana: Yeah, that's been one of the hardest losses with this current situation. Because the incident he was involved in 11 years ago happened out in the community. It was in a store. So for Rob, any place leaving the house felt so unsafe for so long. And like you said, we found this amazing place with a wonderful, kind instructor who had taken so well to Rob and Rob had taken so well to him.
So, like you said, to have that kind of pulled out from underneath us right now, it hit hard.
But like I said, Rob seems to be handling it okay. Fortunately, he's used to being home for extended periods of time, and like I said, he gets himself into his little home routine and does okay. But it builds. Just like any of us, you're home for a long period of time, you’re isolated from the world, you get antsy, you get frustrated a little bit more easily. And we do our best to keep Rob's day fun and plan little surprises and do some outdoor activities. But yeah, losing art class was hard. We had two-and-a-half months under the belt, we were going every week for two-and-a half months. And it was great. But we'll get back there. You know, as soon as some of these restrictions start to get lifted, and testing is a little bit more widespread, we’ll find a way to get back.
Lauren: Yeah, absolutely. I mean, because that's been a real instrument and healing. Not just for Rob, but for you guys, too. For everyone.
Dana: Yeah, definitely. Like we said, to see him be so comfortable in an unfamiliar place with an unfamiliar person has been fantastic.
Lauren: So, can you tell us what a typical day looks like for Rob? How are you balancing the demands of work and life as you manage his schedule? I mean, he's your full-time job. But obviously, you've got a life outside of him, too. So we want to know what that's like for you as well. What Rob's typical day is like. And also what Dana's typical day is like.
Dana: Rob’s sleep schedule can get a little funky sometimes.
Lauren: He’s like me; he’s a day sleeper.
Dana: He is a day sleeper!
Lauren: We love naps! (laughs)
Dana: (laughs) It all depends. He’ll sleep for an extended period of time. And on days where he's been up most of the night and is planning on day sleeping, I'll cut them a little bit of a break. I'll bother him every once in a while and make them wake up here and there, and answer a few questions for me, or look at some pictures and we'll talk about some stuff, and then I'll let him go back to sleep. But on days where he's awake most of the time during the day, he likes to get up and start his day usually with a game show. He likes to watch The Price is Right. He loves Password Plus.
Lauren: I mean, I don't blame him!
Dana: And then we interject some activities, but we really kind of let Rob guide his day.
Again, there's no need to force him into some crazy, insane, unattainable schedule. Because for him, that's just not realistic.
His home is where he lives, it's where he's comfortable. So we'll plan things and especially since the weather is nice, my mom and I like to do a lot of gardening. And we usually have Rob help. He likes to water. He likes the hose. So we'll have him water the garden, we’ll have him help us plant some seeds, we’ll try to get him outside for some time on a scooter. He also loves bubbles.
Lauren: Again, he has excellent taste!
Dana: Right?! Isn’t it great? We have a lot of fun. Its a job, but I get to hang out and have fun with Rob. So we'll make sure we do a lot of that. But we also make sure we give them a lot of downtime. He likes to also watch Sesame Street videos on YouTube, listen to music. So it's balancing out Rob's wants of the day. And then the things that we have to get done, in terms of his service plan and his objectives. But we always find a fun way of mixing those into our day,
Lauren: What about you? This is your full-time job, and you've moved back home to take part in taking care of him. How has this affected your life and the way that you see your career trajectory, and just the way you see your life trajectory?
Dana: You know, it's been quite the change. At my previous job, I was on track to get into the staff training fields and get into the professional development department, and solidify my spot in the company for a while. But the way things played out, it was the best time for me to leave that life behind and move home to help out — before things became too serious with my parents’ health, or anything like that. So it's been a big adjustment, big adjustment. It took me a long time to figure out what I wanted to do, where I wanted to go with this, what I needed to focus on — because it was just so different. In my previous life, in my previous career, I was working full-time, I was in school full-time. It was different. And now I'm home and things are a lot quieter. I don't have as many responsibilities in terms of the job.
Lauren: Are you living at home, too? Are you living with your family?
Lauren: You got your own place.
Dana: Yes, that was number one!
Lauren: That’s a great boundary because you have to take care of yourself.
Dana: Yes, it definitely was needed. I lived at home the first couple of months, pretending to do the whole ‘Oh, I’m going to save money.’ But for sanity’s sake, I got my own place. And that's been helpful, too. But like I said, it was an adjustment, but it's been nice. I've been able to kind of scale back and focus on the things that are important. And focus on my family and focus on, like you said, focus on the future, and really start kind of solidifying our plans for the future and focusing on how we're going to tackle this. Because it's not something that's going to be just short-term right now.
Robert is going to need long-term care.
And whether I'm going to be the one providing it, or we're going to find other people that are going to help provide it … again, these are all conversations that we consistently have been having recently. But I do my best, once I leave home/work; I do my best to focus on myself. I used to love going to the yoga studio. My instructor is amazing, and she's been running classes on Zoom. I've been doing a lot of online yoga, I get out for walks in the woods. I have a lot of FaceTime dates with friends. So, you know, I try to find my own balance of my life and focusing on me, but then also being really focused on Rob throughout the week when I'm there.
Lauren: It's an interesting role to be playing, too, because while you're not giving yourself up entirely when you're with him, because he's part of who you are — he's your brother, and you're with your family — it is this idea of caregiving, too, which we haven't covered in a lot of detail on the show. But as a caregiver, what you do is you give up of yourself entirely for the time that you're with whoever it is you're taking care of — in this case, 40 hours a week with your brother. But, of course, because he's your brother, the care is going to extend beyond those 40 hours. I mean, he's someone whose life you're invested in, in every way. So I wonder … obviously, this is the reality you've always known on some level … but also, what effect has that had on perhaps the expectations that you had for the direction of your life, or how you feel about where you're going and where you are. You knew at some point that you would probably be full-time back on the caregiving team. And now this is what's happening, it seems to make a lot of sense. I'm just curious about the psychological effect of all of that on you, too.
Dana: It can be tough.
Thinking that this is something I'm going to have to do for the duration of our lifetimes can be pretty overwhelming.
And to be honest, it's not something I let myself think about too much, because it can spiral and it can go down a really bad path for me in terms of my mental health. But I think that’s normal. That's not something that I would say is outside of the norm. Again, I know I'm not the only one in this position, either. I know that there are family members who are providing long-term care for others. And I'm sure that they feel similar, too. So again, like I said, it can be be overwhelming, but it's something I try not to think too much about. I know that I have educated myself and gotten the experience that I need to understand the type of care that Robert requires. So I feel very equipped to help train other people in caring for Rob, now that I've spent a lot of time getting reacquainted with him. It took us a while; it took us a long time to get reacquainted with each other, and to learn the ins and outs of his home routine in his life with Mom and Dad at home, and how I could help him gain some skills within that setting. So now that we've gotten to know each other really well again, like I said, I feel very equipped to be able to train somebody else in the future to get to know Rob. And I think that going to art class and seeing Rob and his instructor together gives me even more hope that there have to be other people out there who would be able to fill a caregiver role for him, besides myself, and be successful in it.
Lauren: And what about you? We know that there are now services in place to support Rob, and his education and his ongoing care. Are there services available to caregivers like you for ongoing care, too? Be that mental health services or otherwise, that you're also offered support?
Dana: I think, through the individual companies that employ these individuals who are in my position will typically provide some type of mental health care, whether that's on site with a local counselor that they have in their building. But there isn’t a broad, general statewide or federal mandate that allows us to easily access any type of mental health services. It's not like, “Oh, your co-pay is waived. Here you go, free therapy.” It's still something that falls under our personalized insurance. I think it's something that needs to be prioritized. I think it's something that isn't given a lot of forethought. And it is something that needs to be advocated for. Because it's important. It's crucial. Because if my head's not on straight, and I don't have myself together, how am I supposed to care for Rob the best that I can? It's that whole ‘Make sure your cup is filled before you fill anyone else’s’. I mean, this is a prime example. Anybody who's in a caregiver role … and these are conversations that I've had a lot with my mother, too … because my father has worked full-time as long as I've been alive, so he sometimes has days where he's out of the house; he does work from home too, and especially now he's home all the time. But there were days he would get out of the house and he could kind of step away from the situation.
But my mom has been in the trenches for 34 years, as long as Rob has been alive.
It's a conversation that we've had a little bit, too, because when you're in this role, it's so easy to just give all of yourself to the other person.
Lauren: Especially when it's a relative.
Dana: Exactly. And well, for her, especially when it's her son. You feel so selfish, taking time away from him to give time to yourself. But it's conversations we've had recently, how important it is — even if it’s five minutes — to do something that you like to do. But the mental health aspect of caregiving can be very tough.
Lauren: Yeah, it's pretty fraught, it seems to me. Especially because it's taken 30-plus years for social services to be in place to support a patient like Rob. I guess the next step in the evolution of that process is support to caregivers as well. Which maybe in another 35 years, we'll have!
Dana: Maybe. And the services they have in place to help people like Rob are not great. They're technically they're on paper.
Lauren: Yes, and I'm interested in digging into that in a little bit, too. You mentioned, especially early on in Rob's diagnosis and when he was younger, this experience that your parents had in going to different conferences and trying different therapies — where the underlying thought was that autism was something that could be remedied. I'm wondering if any of you have been in situations where you've been confronted and forced to justify or validate Rob's diagnosis with someone who didn't understand it because they just couldn't see it? And what those experiences look like for you guys.
Dana: I know it was something my mom faced a lot when he was younger. Because the thing with autistic individuals is that there is no physical marker. There's nothing physically about them that screams, I'm autistic. It's mostly behavioral.
Lauren: He looks like a normal kid, yeah.
Dana: Right. Yes. So it's hard. It can be tough because when he was younger, people would see this kid who would be jumping around and yelling, and their first instinct would be, oh, he's just a brat. He's just an out-of-control child. So my mom had to definitely walk that line a lot more when he was younger. Now that he's older, Rob does a pretty good job justifying his autism all on his own! (laughs)
You know, you see a 34-year-old man running through the parking lot with his hands wavin’ in the air … !
Lauren: It’s just that he’s super enthusiastic. He’s a party. Rob’s a party!
Dana: (laughs) So it's been a little bit different as he's been older, too. You see, again, a 34-year-old bearded man walking hand-in-hand with his mom and sister into a doctor's appointment. There are more subtle signs since he's been older that something isn't 100% right. But like I said, that was something I think my mom confronted a lot when he was younger The first pediatrician that she actually took him to refused to believe that he was autistic. He was, like, “He doesn’t act autistic. If he was autistic, he would be waving his hands, doing this." And I guess he did some imitations that don't seem very politically correct these days. And was, like, “He's not autistic.” So again, she had to advocate and push and push and push, and eventually went outside for a second opinion to get the formal diagnosis. So even with doctors, she has had to justify it — in the past. But like I said, it's not something we really have run into recently with him.
Lauren: I ask everyone about the role of privilege versus prejudice in their experience in the healthcare system, and I’m wondering when it comes to Rob … perhaps he presents as the most privileged, as a white male in the healthcare system. And his caregivers are two white females. I'm wondering, because of the way that he presents and the way that his advocates — you and your mom — present, can you see your circumstances being different with this journey to diagnosis and this journey through treatment or support services, if you presented otherwise? Like maybe if you've been a family of color, or if his advocate had full-time maybe been your dad … do you think things would have looked different for you guys?
Dana: I definitely think that being white has led us to have some privilege, especially within the healthcare system. It's tough because, his diagnosis with autism, we've seen discrimination from doctors, from health care providers, been told that they would no longer see us or service us because of his diagnosis. And because he's not vocal. We would get a lot of pushback because he can't advocate for himself. So trying to find mental health services for Robert … that’s actually been something we've been working on recently … has been very difficult, because a lot of psychologists and psychiatrists will refuse to see him because he is non-vocal. So that in and of itself has been very difficult.
Lauren: So that's a great example of prejudice against anyone who's got an autism diagnosis.
Dana: Yes, right. And the thing with autism, too, is that there is a lot of systemic racism within the autism community, as well, in terms of advocacy and support.
Back when he was diagnosed in the '80s, autism was thought of and presented as a ‘white boy disease'.
White little boys who were autistic. If you look at the advertising and you look at the media that was used. Specifically, too, with Autism Speaks — which is a hot topic, very controversial within the autistic community. A lot of autistic individuals who are able to self-advocate speak out vehemently against Autism Speaks for a variety of reasons. But they're an organization, too … if you look at their marketing, and you look at their media, it's a lot of white kids. You see a lot of white boys, a lot of girls.
Lauren: Well, probably because of the systemic racism in the healthcare system, it's probably because the white people were the only ones who were getting diagnosed at first.
Dana: Exactly, and again, it leads to this bigger conversation of racism in society in general in that because we are middle class white folk, that we are privileged enough to have access to health care.
Lauren: But that doesn't mean that that’s adequate either, does it.
Dana: No, not at all. So it’s tricky.
Lauren: Yeah. You know, what else can you say … it is tricky!
Dana: It's tricky because you do, in some cases, know that you are privileged and able to access other things that you might not otherwise. But then you still see areas in which you are discriminated against because of his diagnosis.
Lauren: It’s really tough. Let's dig into the healthcare system a little bit. I'm wondering, given your experience, not only with Rob, but also with other kids that you worked with and other patients that you worked with, before coming home to work with Rob … in what ways are you seeing the healthcare system work for autism patients? And in what ways do you see these services really falling short and requiring improvement? I'm sure that there's a lot that you can see right away, and I'd love to get your take on it.
Dana: It works really well now for young children who are first receiving a diagnosis. And younger school-aged children, it works well. They have a lot of mandated therapies in place, insurance typically will cover the therapies that parents are seeking. It all falls apart when these kids age out of school, and they go from school-based services into Medicaid-funded state services.
So crossing that bridge and making that transition from high school age to adult age is where you see a lot of services kind of drop off.
And that's where you see staff, really, who are unqualified to be working with this population end up in jobs as these caregivers and these service providers. Because once it crosses the line into state funding and these are adults you're dealing with, the requirements for the job are less. The organization that I was working at out in Massachusetts, they typically hired kids straight out of college, with degrees … you have a four-year undergraduate degree and you're coming to work here to work with these school-aged kids. Not 100% the case, and I know that some of their requirements have become less strict, but there's still this level of education and there's a level of training that they receive at this private company that is just unparalleled. And then you go from that to a state-funded program, where it's anybody off the street who needs a job, essentially. You have a high school diploma? Okay, great, you can work with us. That's not to say that education Is everything, but to some extent when you're talking about autistic individuals, you need to be able to have a level of understanding and you need to be able to absorb the training that you should be getting in order to provide care in a meaningful, kind way. It's just tough and it's hard because for staff like myself who work as DSPs, the pay isn't great.
Lauren: Tell us what a DSP means.
Dana: DSP is a Direct Support Professional. So the pay is not great, and a lot of times people are working second and third jobs in order to make ends meet.
Lauren: So how are you attracting quality people to the job, too, if you're not offering good pay? And if you're burnt out, that's where it’s, like, where does your support come in?
Dana: Right. And that's the issue we saw, too, with Robert and his incident. The staff that was working with him was frustrated with Rob because Rob couldn't communicate his needs. He had reached a level of frustration and I'm sure that there were other things going on in his life that were also frustrating. But you carry all of that with you into the job, and then here it is — you completely destroyed an individual's life. But it's hard because you can't blame the people that are in these positions. Again, it's it's a bigger issue. It's a funding issue. It's a state regulatory issue. It's these agencies not vetting people who are working with these individuals, not providing the adequate training that's needed. Again, it's kind of a mess. The adult services area is not pretty, and it can be very tough for families to go from receiving such high quality, high-end, 40-hour-a-week services to getting almost nothing. And if you can’t find a staff member to come in to implement your service program … that’s it, good luck. We know you both have full-time jobs but your kid aged out of services and we have nothing for him. He's on a waitlist for three years. Maybe you'll get services … then figure out how to watch him and take care of them.
Lauren: Why do you think it is that the adult services are so underfunded? Is it because the kids aren't cute anymore? Is it that simple?
Dana: You know, I definitely think that has something that comes into play. Again, for these companies — even the companies I worked at — a lot of the advertisements to gain staff's attention were, “Come work here. Look at how cute and fun these kids are. You get to go on the swings and blow bubbles!” And then you see those cute little kids, and you’re, like, oh, that looks so fun. I would love to do that.
Sub in a 34-year-old bearded man on a swing with bubbles … and like, maybe not as attractive. For some!
Lauren: I would say, I would love to blow bubbles and sit on swings with Rob! For anyone who watches your channel, I think it's such a great example of how the spirit is exactly the same. He might be in a 34-year-old man's body and have a beard now, but it's about the spirit, not about the body. And that's what's so interesting about this entire conversation, because the spirit is such an infectious one to be around. Rob's such an infectiously happy, lovely human. And why wouldn't people want to be around that? Just because someone gets an autism diagnosis doesn't mean they're not the most lovely human being to spend time with.
Dana: Exactly, no, you're exactly right. And that was a big reason why I did want to get into Instagram and start this kind of advocacy journey. Because that's exactly what I wanted people to see. I wanted them to see how much fun it can be to hang out with Rob all day, And it’s, like, why wouldn't you want to do that? It's great. I love it. But a lot of it, too, has to do with the funding. And the funding, a lot of it, is coming from legislation and the federal government. And the need hasn't been recognized as it should have been. There's so much focus on early intervention and helping these kids out early. Yes, very important, extremely effective. But that doesn't take into account the population of adults who have already aged out of all of these services, and are trying to make it on their own, and trying to find services for them. But a lot of it is funding and politics. There's only so much that you can do with the services that you're given. And again, because of the funding that prevents a lot of these organizations from providing the type of training that you need to give people in my position.
Lauren: Well, and then you're also in that situation that you guys are in right now, where you're in a single-income household. And how are you then supposed to pay for additional services that maybe you could afford privately, but you can't afford that when only one person is able to work and everyone else is a full-time caregiver. So it's a real Catch-22 … you’re sort of stuck between a rock and a hard place.
Dana: Absolutely. And it's very unfortunate because like a lot of other areas in life, money talks and money can get you whatever you want. I know of very financially well-off families who have come together to put together a group home for their set of autistic children, hiring specific staff and being able to cherry pick and handpick the best of the best to continue to work with their kids for the extended duration. We're not one of those families. We don't have the money to open up our own group home, or we don't know any wealthy families in the area that would want to go in together on some type of group living facility for Robert and other autistic adults.
Lauren: And that's something that could be a long-term solution. So that then affects the planning.
Dana: Absolutely. So again, it's this area where the services are not equal at all. State to state services are different, county to county services are different. Like I said, there's no regulation on a federal level when it comes to adult services for autistic individuals.
Lauren: Tell us a little bit more about why you started Autism_IRL. We know that you won a WEGO Health Award for the work that you've been doing as an advocate for your brother. I'm fascinated to know … you mentioned earlier that you started it up because you wanted people to see how wonderful it can be to work with autistic adults. Which is certainly true. I mean, I get it. I can't wait to visit you guys and meet Rob. But I'm curious to know how your advocacy work has extended beyond just your work with Rob into the community, and what you've learned as an advocate.
Dana: Like I said, I originally started it because I did want people to see this other side of autism, that adults with autism exist, that kids with autism grow up and they can live a happy, independent life at home. It’s been great. I've been able to connect with so many different individuals, kind of across the globe, and come into contact with families who are just newly diagnosed and they are, like, “Oh my gosh, I recognize so much of my child in Robert. It's so great to have this hope that his future will be okay.” So it's been great to connect on that level. And I've also been able to connect a lot more with the self-advocating autistic community and adults who have been diagnosed later in life. And that's a very interesting and necessary perspective to have, to learn from adults who have lived the life of an autistic individual. Because I only know from my perspective as Robert’s sister, and I know as an autism professional, as a Board Certified Behavior Analyst (BCBA) about autism.
But to be able to learn about autism from autistic individuals is extremely important.
And that's another area, too, that doesn't get enough of a platform; they don't have enough of a voice because they have people who think they know better or know what's best for them. So that's been great, too. I've been able to connect with a few individuals in that community as well. I just feel like being in this social media world and on this platform, I've gained a lot of insight. And I hope I've given some to other people, too, a lot of families that I've been able to connect with. So, it's been great, and like you mentioned, it all cumulated and led to a WEGO Health Award, which was awesome because I got to come to Vegas and meet all of you guys and talk about autism on a stage at the MGM in Vegas.
Lauren: And there were two other autism … one wasn't able to attend, but in those awards, there were, aside from you, two other autism patient leaders — one being parents who are caregivers of a non-verbal autistic teenager, the other being Dan Jones, who's been on the show.
Dana: Oh, that’s great!
Lauren: Yeah, someone who is advocating for himself as you've mentioned, an adult living with Asperger’s. So it's interesting that these patient leader awards have also recognized not just the caregivers, but the patients also, and everyone contributing to this conversation about being an adult living with this condition.
Dana: Yeah, absolutely. That was great to see. Like I said, autism has had a rough go over the years in terms of advocacy and awareness and acceptance. We still have a long ways to go, like a lot of other disorders do.
Lauren: Because there's a lot of people who think … I mean, it's also fraught with the whole anti-vaxxing debate, right.
Dana: Oh, my God … !
Lauren: I’m fascinated with your take on this one, too, because it divides the autism community in a way, doesn't it. Because there are some who just accept, okay, autism … this is something, either it's genetic or it's a condition of birth, it's not anyone's fault. And there are others who think, okay, it's a vaccine that caused my child to have autism. Realistically, where are you and a lot of these other patient leaders falling, in terms of how fraught that division is within the autism community itself?
Dana: That is a tough one. And I will say personally, myself, I am a very firm believer in science and data.
Lauren: That’s a very nice way of answering that question! (laughs) She believes in vaccines, guys, is what she’s telling us! (laughs)
Dana: (laughs) Yes. Please vaccinate your children!
But it's hard because you can't dismiss the claims of these mothers who did see their children regress around that age.
There was actually a very informative article — I think NPR was the one that released it, maybe a few months ago — where they talked about the myelination process, and how that impacts, potentially, an autism diagnosis. And if you look at that, that occurs right around that same age … that two years, three years when you start vaccinating your children. Again, I'm not a scientist, I'm not the one researching and studying this. But I do believe vaccines are important. And I do believe you should vaccinate your children.
Lauren: It is so divisive. And it's such a touchy subject for people, too, because, as you say, how do you dismiss the claims of a mother who sees her kid decline at a certain age. You can't tell someone it's all in their head when they're telling you what they're seeing, too. That's really tough, like, So I understand that's one of those conversations in the autism community, in and of itself, that it's got to be really tough to have,
Dana: if you have time. I will recommend watching Vice Investigates the Anti-vaxxer Movement. I believe it's the show that they have on Hulu. But I'm sure if you have their app …
Lauren: I’ll link to it on the page for this episode.
Dana: Yeah, it's a very informative evidence-based perspective on the anti-vaxxer movement in general, not just autism-specific. Because the the anti-vaxxer movement, there are some other components to it that don't just involve autism. So again, very interesting watch if that's something that you're into, and you want to know a little bit more about.
Lauren: But it's got to be tough, too, because you're someone who's embraced the autism community. You guys are all supporting each other so much, but obviously, on some very fundamental issues, there's going to be disagreement too.
Dana: Yeah, definitely. And that's the other thing, too, is that there are certain topics within this community that do divide us. Myself professionally, as as a Board Certified Behavior Analyst, as someone who has implemented ABA therapy … ABA therapy has a lot of controversy around it. A lot of self-advocating autistic individuals despise and hate and say that ABA is traumatic.
Lauren: Tell us what ABA means as well?
Dana: Applied Behavior Analysis.
Lauren: Not everyone knows the lingo. So we want to make sure. (laughs)
Dana: I’m so used to just spouting out acronyms.
Lauren: That's part of what you do as an advocate. But also, it's what you do 9 to 5. If you're having to make phone calls to advocate for your brother, you do have to throw out the acronyms because you know what you're talking about.
Dana: Right. Yeah, there are certain topics like that in the community that still divide us — vaccinations, ABA, any type of treatment that you're going to use can cause a big rift and cause a lot of controversy. A lot of it is a back-and-forth between autism parents and caregivers, and autistic self-advocates. Because it's, well, who speaks better for the person? Who can speak better to Rob's perspective? Who can speak better for Rob? Can I speak better as a neurotypical sibling? Or can an autistic individual who has lived this life speak better for him? And I don't think it has to be an either/or, I think it needs to be a both. I think you need both perspectives.
But it can be hard because there are some people who are very adamant that they know better than anybody else.
And you see that on both sides — the parent side and the self-advocacy side. So it's going to take a while to get people to get on the same page and advocate as a cohesive group and a cohesive community. Because how can you advocate for the funding that you need and the support that you need as a community if you are yourself divided.
Lauren: Yeah, absolutely. I think that's so well said. I'm gonna slide into the end of this interview with a couple of Top Three Lists. But I wanted to know if there was anything else you wanted to share about your experience before we get into that.
Dana: I think kind of voiced most of the things that I wanted to touch on.
Lauren: Good, I wanted to make sure that you’ve covered the things you wanted to cover. So, the first Top Three List that I start with is: I'm wondering what your top three tips might be for either a patient who maybe suspects … gee, maybe my behavior isn't neurotypical; maybe I need to get checked. Or perhaps a caregiver who's going, gee, maybe my kid’s not verbal yet, or seems a little slower to develop, or whatever. What would you recommend for people who are entering this world of invisible diagnosis?
Dana: I’m going to keep it pretty simple … advocate, research advocate.
But really though, if you suspect something is off and you suspect something is wrong, whether it's with yourself or a family member, you have to be the ones that speak up.
And you have to be the ones that make yourself heard. Like I said, especially when it comes to these invisible illnesses that aren’t physically seen, more often than not, you're not believed right away. “Oh, we think it could be this.” “Oh, it could be that.”
Lauren: As you’ve shared, you guys went through that already, with a pediatrician.
Dana: Yes. It’s so important to advocate, advocate, advocate. And then hopefully, when you do receive a diagnosis, or if you have an inkling of the diagnosis you might have, do your research. Get on the Internet, find evidence-based sources of information that are going to fill you in a little bit more, and maybe help guide you on how to have a conversation with your healthcare provider, who to get in touch with, what services your state offers. So, do your research and then keep advocating. Keep speaking up, go to a different doctor, find a different provider, if you can. Call service agencies and see if they offer any type of diagnostic assessment. You have to be your biggest advocate — either for yourself or for the person that you're caring for.
Lauren: Yeah, absolutely. Couldn't have said it better myself. This one's just for you … three things that give you, as an advocate, and if there's anything for Rob as a patient, because we know he has a few favorite things, too … that give you guys unbridled joy, things that you're completely unwilling to compromise on in life. So this could be guilty pleasures, secret indulgences, comfort activities, or just the things that make you so damn happy, you’ll never give them up. What are your top three?
Dana: Collectively, myself and Rob, we love to watch Disney movies.
And we love to watch old Sesame Street videos together.
These are things from our childhood that we have so many memories attached to, and it's all of these songs that we used to sing to Rob from Sesame Street and the Disney movies. It's something that we can still come together as a family and love and have a great time, watching movies together and eating popcorn. That's really awesome. And I think, too, we're big foodies. We love our snacks. We love our food. So for Rob …
Lauren: He can be quite insistent about his favorites, can’t he!
Dana: Yes, yes, he can, just a little bit.
Lauren: He has very specific and refined tastes.
Dana: And he will let you know! (laughs)
Lauren: Yes, he will! (laughs)
Dana: But we love to bake. We love baking. My mom, every year around Christmas time, makes big batches of cookies and Robert’s favorite are the white chocolate chip cookies that she makes. Oh so good, you know little little colored sprinkles on top. They're fantastic. He also likes to put a little touch of pink frosting on top on occasion.
Lauren: He’s got such good taste!
Dana: So that's something else, too, that that we really connect over, and love to do, and it's something that we would never give up. We recently made a batch of cookie dough and kept some in the freezer and baked up some cookies so that we can make those whenever we need, if Rob needs a little bit of a pick-me-up there.
Lauren: Christmas time is actually a really special time with Rob, too, because he's got quite a few treats that he gets over Christmas. His Christmas village.
Dana: That was the other thing I was gonna say, is Christmas time and Christmas decorations. That’s the holiday that seems to get Rob the most excited, which in turn, that's something that we as a family love to witness, too. To see Rob so happy to come out from his bed.
We usually try to decorate in secret when he's sleeping.
We'll try to do a big changeover and set up his whole village with all of his light ornaments and his singing toys and everything, so that when he wakes up, he just walks out into it. And it's awesome. He interacts with all of his stuff in his village. He knows what he likes and what he doesn't like, and he'll pull things out — if my mom will put a plastic reindeer in there that he doesn't like.
Lauren: That’s really sweet. I love that your Top Three is entwined with Rob in that way, because it really goes to show how much joy there is. This has not been an easy conversation to have; there's a lot of ups and downs in the treatment plan and the long-term care, in the changes that you've all had to make to accommodate Rob. But by the same token, that's all outweighed entirely by the joy that you get from seeing him happy and well. And that, to me, is the the underlying story with all of the work that you do, and hopefully what people will get out of this interview, too — that it's about sharing joy and sharing love. And that's what we get from seeing you guys all together. And it's such a joy. Literally, when we started this interview, I thought to myself, oh, when's Christmas? Because I just can't wait to watch Rob freak out about his village! It’s the best thing to watch. And I mean, look, I haven't met Rob in person. I've only had the pleasure of meeting you. But I feel like I know you guys so well. And I really encourage everyone who's tuning in today to check you guys out, and check out more of your story, and just get more of an understanding of what it's like to have an autistic adult in your life who's just a joyful, loving person. It's such a joy to watch. I get so much joy; if I'm having a crappy day, I watch some Autism_IRL because I know that there will be something that Rob has achieved that will have given him joy that I will get joy out of watching him. It's so wonderful. I can't speak more highly of you guys because I'm obsessed.
Dana: Well, thank you!
Lauren: It is so wonderful to watch and to be on that journey with you guys. And I can't thank you enough for creating this content, purely by pressing “record” when you're doing what you do. Because it really gives us wonderful insight into a very full and happy life that you guys all have together.
Dana: Well, thanks.
Lauren: Yeah, of course. Can you remind everyone where to find you and your work online so they can follow along, to0?
Dana: Yes, we are on Instagram. And the handle is @Autism_IRL.
Lauren: Yep. As in in ‘real life’, y’all. Because in real life, look, there are ups and downs. But ultimately, it's about joy. So, thank you so much for being on the show today. It's been such a pleasure chatting with you.
Dana: Thank you so much for having me!