Tuesday, June 14, 2016

Holly Robinson Peete on Including and Understanding Autistic People Like Her Teen Son RJ

 Holly Robinson Peete | Photo: Gatepath
[image: Candid photo of actress & author Holly Robinson Peete]
Actress, author, and philanthropist Holly Robinson Peete spoke at a Gatepath event near San Francisco last week. She talked about her new book Same But Different: Teen Life on the Autism Express, which she co-wrote with her autistic son RJ and his non-autistic twin sister Ryan, about understanding and including autistic people, about supporting autistic kids with high support needs who don't have the resources her family does, and why "We need to spread the word about how neurodiversity is another form of diversity."

TPGA's Shannon Rosa talked with Holly after the event, which was nifty because Shannon worked with the HollyRod foundation during the earliest part of the iPads for Autism movement, including developing a spreadsheet of recommended autism apps, had interviewed Holly, and had featured her writing here on TPGA -- but they hadn't met in person before. 

Shannon Rosa: It's so nice to finally meet you!

Holly Robinson Peete: I know! I feel like I know you 'cause we're such social media buddies.

SR: So can you talk a little about your son RJ's reaction after the rapper 50 Cent made fun of an autistic man named Andrew Farrell on Twitter?

HRP: RJ recently had a meltdown after a concert. He thought he was going to get to do something after the concert that he didn't get to do: See the artist, connect with the artist. Sometimes when he gets something in his mind, it's hard for him to process the fluidity of life. And so I said to him, "Listen, we can't go back there." And it was hard for him to process that -- he was struggling on a lot of levels. And this was in front of a lot of people on the way out of this concert. He was all emotional, kicking stuff and also feeling bad about it, his sister and brother were trying to help him and he was yelling at them.

So he came home, and he cried. He said "I hate having autism, I hate not being able to be in control of what I'm feeling, I didn't mean it, I'm going to apologize to my brother and sister for ruining their night" -- he was very remorseful. We stayed up late talking about it, and I said, "Why don't you write? Just write about it." And he started scrolling on his phone, and the story about 50 Cent came up, about bullying a young autistic man in an airport in Ohio.

RJ said, "That makes me mad!" and so I said, "What would you do if someone said did that to you?" And he said, "Yeah, what if someone did that to me tonight? While I was screaming, while I was in a bad space? What if somebody recorded that?" What if someone like 50 Cent with his eight million Twitter followers shared it and you were viral right now? You can't ever get rid of that."

So he said, "Oh my God." I said, "Why don't you write a letter to Andrew? We can get it to him." And so RJ wrote a letter, saying "Dear Andrew, I can't believe you had to go through that, and I'm sorry. My mom wrote a letter to 50 Cent about something else he did years ago, and you think he'd learn his lesson. I was embarrassed when she did that then, but now I'm mad" (and then he went into some other things that I had to take out of the letter).

The Huffington Post featured RJ's letter, and they got a really big reaction -- but I think what was kind of lost in their version of the letter is how much RJ was personally struggling that night. He had really been having an emotional breakdown. And so for him to connect with this young man, and to put himself in his place, was a moment of empathy that I hadn't really seen him express. He hadn't really connected with other kids with autism before -- almost like he was afraid to say "Oh, that's just like me," because there were moments that he tried to distance himself."

SR: Well, he's a teenager.

HRP: Right. It's not "cool." That's what was so profound, and so compelling for me about his HuffPo piece -- he had a really bad night, but he made something good out of it. We had a lemonade moment!

Same But Different book cover
[image: Orange book cover with
two illustrated Black teen faces
in profile, white text reading
"Same but Different," and black
subheader text reading "teen life
on the autism express."]
SR: Tell me about your book Same But Different. You wrote it with RJ?

HRP: Yes, RJ's voice is in here. Ryan [his twin sister] and I broke down all these different topics with cute chapter titles -- coming up with all the themes of our life, like school, social media, dating, puberty, vacations, where they both struggled. So it's kind of like My Brother Charlie [the kids' book about autism the Peetes wrote when the twins were 12] on steroids. Now Charlie's a man.

But not all of the things in Same But Different happened to us. It's semi-autobiographical. That's why we kept the names (used in My Brother Charlie) Charlie and Callie, because we brought in other families' stories. These are families we've been on this journey with, and it was a chance to weave together all our stories and experiences.

RJ's voice was hard to extract, because he sometimes wants to talk, but then other times he doesn't. We had to keep reminding him that someone was going to read this, and that it was going to help them. He loves the fact that he's an advocate; he just doesn't always feel like advocating. But it's hard when you're on a deadline! So we talked with him about the reality of working, about understanding that this was his job. That he was a paid author. That he got paid for this. He relates to money (laughs). He doesn't do direct deposit for his job with the LA Dodgers, because he wants to see the check and run down to the bank.

SR: It's important to talk about families like ours, with multiple teenagers, in which you have to constantly arrange things to accommodate everybody. Is that something covered in your new book?

HRP: Definitely. We also brought in the two younger guys -- the two little brothers, as peripheral characters. But the family dynamic, it always goes as RJ goes, how RJ was feeling today. And the other siblings expressed that they were sick of that: "What about me?" What about my moody middle teenager boy, who is such a diva, and is going through everything with his hormones -- the other kids sometimes feel a little cheated. And so that open conversation is something that we have in the book. It's more of a "keep it real" moment. I was glad Scholastic was open to having those moments in the book.

SR: These conversations are hard. And you can tell me what you think about this -- but I feel like it's usually hard because we don't have the resources we need to support our kid the way they need to be supported.

HRP: That's right.

SR: And so everybody's figuring it out for themselves. Even in families like ours -- as you said during your talk, the luckiest families.

HRP: We're the ones who have the connections and resources, we can do it. These families that are under-resourced, it's amazing to me how they get by, how they figure it out.

SR: Yes. I just came back from the International Meeting for Autism Research. People were talking about resources and supports, but then we'd have people come in from places like Venezuela and Palestine, and they're worried about things like getting safe transportation, and finding enough food. So how are they supposed to be able to properly support autistic kids? 

HRP: Yeah, we went to the Bahamas and we did some speaking, and they're still tying kids up to trees there, and locking them away, without even giving them a shot at figuring out who they are. And I was shocked to hear about what they do to autistic kids in France. Why are they so bad?

SR: I don't even know. I read an article recently in Psychology Today on why French Kids Don't Have ADHD, and was really irritated. Because it's not that French kids don't have ADHD, it's that the French don't recognize ADHD. The treat it the same way they treat autism -- with psychotherapy.  I remember thinking "Are you even kidding me? That doesn't mean they don't have it."

HRP: (Laughs)

SR: I wanted to ask you, what kinds of resources does RJ look to when he's learning about his own autism? Is he hooked up with any advocacy communities?

HRP: That's a good question. For him, it's all about the Internet. He does his own research, like coming across that story about Andrew. He looks for the word 'autism,' it resonates with him. But because he's 18 now, and because he's a man with a job. There are certain things he connects with, and certain things he doesn't. It's all about Googling, that's his university.

SR: That works well for some people, not so well for others. 

HRP: Yeah, but he finds things. And he always runs them by me, because he knows it's not all true. He doesn't automatically believe everything he reads. He's seen me tear things down.

But -- when I bring him to events like this talk, like a recent one in North Carolina for helping adults live independently, there was a Black man there, about 25 years old, named Dart. He was autistic, Deaf, and had a job, and living on his own; he was signing away, and smiling. RJ asked me, "Why is he smiling? He's Deaf and he has autism." And I said, "He smiling because he has a job, he had a team, he's connected."

It was still hard for RJ to understand, so he asked to get up and speak, and he said, "I am so inspired by Dart and the people in this room, because I don't always feel like smiling." So I find getting him out, and getting him in community, really makes him more aware. It's a resource for him -- seeing other successful people like him.

The other thing he has is a pre-vocational group with a bunch of kids who went to speech and language therapy in Culver City. These kids are African-American, Latino, and white, but they're all in the community -- RJ is kind of the "rich kid." His connection with that speech and language therapy center has been a tremendous resource for him. He got an internship with AIG, they went on a trip together and helped nuns build a farm together. So he has a group of kids who are his age, who are all over the spectrum. That's been a huge resource for him.

SR: Has RJ seen The Autistic Self Advocacy Network's Welcome to the Autistic Community handbook? I wonder if, even if he wouldn't be into it now, it might suit his needs eventually. It's meant to be in casual speak -- for adults and for adolescents.

HRP: Oh! I would certainly like to see that.


 

Here is TPGA's Storification of Holly's Gatepath talk: