Holly Robinson Peete has been in the spotlight since she was 5 years old, when she appeared in the first episode of Sesame Street more than 50 years ago. She had a hard time not addressing the character Gordon as “Daddy” since, well, the actor was her actual dad, and was ultimately relegated to a non-speaking part, but she’s certainly found her voice since then. Outside of a decades-spanning acting career that’s included lead roles in 21 Jump Street and Hangin’ With Mr. Cooper, a hosting gig on The Talk, and her own reality television shows, she’s also co-founder of the HollyRod Foundation, providing support and resources for individuals and families living with Parkinson’s disease and autism. Peete’s autism activism began shortly after her son R.J. was diagnosed in 2000 and, though she was less vocal about her family’s experience with the disorder initially (more on that below), both she and R.J. are strong advocates for the community today.
Recently, Peete teamed up with Beaches Resorts, the world’s first resort brand to achieve the Advanced Certified Autism Center (ACAC) designation from the International Board of Credentialing and Continuing Education Standards (IBCCES), to raise awareness for autism inclusivity in travel. As the brand unveiled yet another round of initiatives to ensure all families could experience a truly luxurious vacation, Peete spoke to us at Beaches Turks & Caicos, where her family was enjoying a getaway of their own, along with Joel Ryan, the brand’s groups manager of themed entertainment and children’s activities.
R.J. is an adult now and a lot has changed in our culture regarding autism, but what was it like for you just trying to live daily life 20 years ago, and why is it important for you to continue advocating today?
It’s amazing to think that R.J. is 23 now. When he got diagnosed at 3 years old it was kind of a kick in the gut and a little bit nuts but, 20 years later, some great strides have been made. There are so many things I don’t have to explain to people anymore because they already know now, but there’s still a lot of awareness needed and there’s still a little bit of a stigma around. I remember the day R.J. was born and we were told he wouldn’t be able to do so many things. We call that “the never day,” and two of the nevers were that he’d never have meaningful employment and would never drive, but he drove to work yesterday.
“If someone tells you who your child is going to be at 3 years old, you need to push beyond that.”
These are the things I want to share because I do want families to listen to their doctors, but if someone tells you who your child is going to be at 3 years old, you need to push beyond that. I’m always advocating for families to see the possibilities and stay very hopeful. There were a lot fewer people being diagnosed when R.J. was born. I want to say it was around 1 in 150 back then, and now it’s 1 in 54. Whether it’s better diagnoses or more prevalence, the reality is we have to talk about it more.
When did you decide to expand the scope of the HollyRod Foundation, which you founded with your husband, Rodney Peete, to include autism?
It took a while to expand our mission because we didn’t really want to make R.J. a poster child or brand him, so we kept his diagnosis quiet for some years. Then I went on the Oprah show when he was around 8 years old and I finally talked about it publicly. That was really my first big moment sharing autism with the world, and it wasn’t easy. I remember sobbing a lot and being sad about it because I wanted to share the story but I did feel like we were branding R.J. forever. But the good news is that R.J. really gets what an amazing advocate he has become and how he’s able to help other families by talking about his situation, and that makes it all worth it.
What goals did you hope to achieve by putting your family out there?
I wanted to achieve awareness. I wanted people to know that young people with autism had feelings. I wanted them to know things like they weren’t deaf. This is something I would hear all the time: “Can he hear? He’s not responding!” Yes, he can hear! I wanted to let people understand that people with autism have value and that they can work, as evidenced by my son and so many people on the spectrum. They have jobs and do well in the workforce. And I wanted people to understand what a beautiful person R.J. was. Just because he processes things differently and has a different way of moving in the world doesn’t make him any less, but a lot of people felt that way, and there still is that stigma out there, so I needed to use my platform to advocate for the R.J.s of the world who don’t have a voice.
A lot of the discussion surrounding autism today is about improving work and school environments, but how does autism affect family moments that others take for granted, like taking a vacation?
Some of the hardest moments I can remember have been when we’ve gone on vacations, but even just going to a restaurant was hard. If R.J. would have a moment, or make noise, or clap, or stim (do something to help him feel better in his body), people would stare or call him names, and I would get so tired of having to educate people. It’s stressful going places as a family sometimes. When I found out what Beaches was doing with autism awareness within their team to train their staff and understand autism so that you could go on vacation where someone would actually understand your kid, it blew me away because there was nothing like that out there anywhere. I still know families in my circle that worry about where to go on vacation, but Beaches really gets it. They understand that our children are unique whether they are 3 or 23. They create experiences for them that give them meaning and make them happy in their life, and that creates an entire family experience that’s amazing.
What are some of the Beaches efforts that spoke to you most directly and how did you decide to team up with them through the HollyRod Foundation to get the word out?
I know from first-hand experience what it’s like to not be able to go on family vacations because of how people would see my son. The relationship really started out as me reaching out to them asking about their program, and then coming to experience it. And seeing their Sesame Street partnership and their philosophy of “see amazing” in every child really hit me in a special way because my dad was the original Gordon on Sesame Street. The whole Sesame Street synergy is really part of who I am, and seeing Big Bird, who’s now a beloved character around the world, just walking around here . . . my dad was the first person to introduce Big Bird to the world on episode one, so it just felt like a full circle. As a nonprofit, we talk about resources at HollyRod, and that includes where you can go on vacation. Beaches is the first resort that really gets it and has trained everyone here to know what autism is and how to be around someone with autism.
Joel, can you elaborate on the “see amazing” philosophy Holly mentioned?
One of the things that we do regularly is promote edutainment. We’ve got a Camp Sesame on the resort, where we take the opportunity of education and make it fun. A couple of years ago we had a program at the camp called See Amazing that was really about seeing the amazing spirit in each individual. We were getting a lot of mixed families coming—families with special needs—so we used that platform to recognize all families, and that of course included kids on the spectrum. We believed that See Amazing was one of the best campaigns Camp Sesame had, so we continue to see amazing and see the unique spirit in each individual and family that makes Beaches their destination today.
How did Beaches become so invested in autism inclusivity?
When I was a camp manager here 17 years ago, we had a family come with a child on the spectrum and my first experience was being the chaperone to this family. I spent my first 30 minutes just being with the family, and within that time the little girl came up to me with open palms and placed them on my cheek. That astounded the parents because it was her very first social contact out of the norm.
This was the first time we customized an itinerary for a family on the property. The little girl decided to lead, so on our first day she led me to the beach and we sat down. I was in my full uniform, so I took off my shoes and sat with her on the beach, and for 5 hours we sat there just living in her moment. That was the pivotal experience for us at Beaches to begin exploring what autism was. That little 7-year-old girl helped us to become open. She was the lighthouse for our embarkation on this journey. When we decided to look further into autism we wanted not only to find resources to help our kids camp, but we needed to look at the entire hotel.
And how did you get started with that?
We found an organization having a conference on autism but when we attended it was predominantly psychiatrists, health professionals and Special Ed teachers from around the world. We felt a little out of place. We were the only leisure company in the room and a lot of the professionals kind of laughed because they didn’t understand why hotels were interested in these families, but I said, “Everyone deserves to have a holiday.” Parents who have kids that have special needs work hard. They devote their lives to their kids and I think that we have to create a space for families to come and feel celebrated and know that it’s okay. That was our first journey into working with IBCCES. We said, “Hey, listen: You’ve got to include the leisure industry. We are part of that holistic individual. We should not be left out.” So we made it our business and advocated for them to come into the organization.
“When I found out what Beaches was doing with autism awareness within their team to train their staff and understand autism so that you could go on vacation where someone would actually understand your kid, it blew me away because there was nothing like that out there anywhere.”
We started out with an awareness program and then a sensitization program, and all the Beaches hotels followed these programs. And then we decided to train and certify 60% of the staff, and that 60% comprised of our entire kids’ camp plus selected individuals from every department—food and beverage, security, housekeeping, landscaping, etc.—all those departments have certified individuals. We want our guests to experience the entire resort, not just one location they should be left to enjoy, so we wanted all of our staff to be able to reach guests in a very positive way and reinforce the messaging about seeing amazing in everyone.
We’ve now got a dedicated concierge department that works with families with autism to develop a dining rotation in advance. We work with them prior to arrival, getting to know what their needs are, and then monitor their experience at each restaurant to ensure that the dining experience is correct. Another of the services that we offer is a buddy program for kids on the spectrum. For all special services that a family might need, we have a dedicated line specific to families with special needs and we will customize the entire vacation from before they even leave home until they depart.
Holly, you mentioned restaurants earlier. How big of a deal is it for a resort’s dining program to be aware of autism needs?
For years my son would only eat three things: fries, pizza, and maybe chicken nuggets. Often, he didn’t want anything to touch his food. Everything had to be specifically placed on a plate. The idea that we could go to a place where that information was relayed to all the restaurants, and they would know that when R.J. comes he wants his food a very particular way, and they would deliver it, like, “Hey, we know you don’t like that ketchup touching those fish sticks!”—that can make or break a vacation. Something like that can throw a child with autism into a full sensory overload, which is very hard to explain to others around you if they don’t know what it’s like to have a child with autism, so the fact that you can go to a place where the chef understands that is really something that makes a vacation so great for the entire family. Just that culinary piece alone of understanding how our kids eat is huge. That’s something we did not have when R.J. was 3. We still talk to this day about this one resort we went in Hawaii where we got kicked out of every restaurant. That would never happen here. You don’t feel left out here. You don’t feel ostracized. My daughter, R.J.’s twin, joked the other day, “Why do you think I learned to eat so fast? Had to eat quick before we got kicked out.” We laugh about it now, but the good news is that there are places like Beaches today that do understand the bigger picture, and put inclusivity as a very important element of vacationing. It’s a game-changer for families.
Joel, Beaches just unveiled a new sensory guide for families with autism. What does that mean?
The sensory guide is designed to better service our guests and make sure they understand the scope of the hotel. We’ve done really well to make sure the human connection is out there, however, the guests are asking for more information, like knowing exactly where our quiet spaces are located throughout the hotel or knowing the noise level at the water park so they can really plan out their experience in advance. Remember, the spectrum is wide, so the sensory guide is a great new tool for parents to really know before they arrive, what some of the specific things are that they personally need to prepare for.
Holly, as someone who has experienced a lifetime without resources like this and is now seeing the change, what does something like this sensory guide mean for a family with autism?
This is something that we didn’t have access to in the past and it’s not only great for our family and other families impacted by autism, but for other vacationers here to be able to make a connection with a family living with autism. They take that awareness back to their homes. It’s an “each one reach one” scenario where it spreads more awareness and understanding one interaction at a time. It’s bigger than just one vacation. It has lasting effects outside of the resort.