Living with Autism

Actress Holly Robinson Peete was once best known for her roles in 21 Jump Street or Hangin’ with Mr. Cooper. But for the past decade, she’s had an additional fan base and they don’t care about her acting chops.

They are people-parents-like her who have lived through the ups and downs of raising a child with autism. Since Holly’s oldest son, RJ, was diagnosed with autism about 12 years ago, she has become a tireless advocate for the autism community, speaking out for parents and siblings of children with autism as well as for the children themselves.

She and her husband, former Detroit Lion Rodney Peete, run the HollyRod Foundation, which works with families affected by Parkinson’s Disease and autism. They are raising funds for a center to be built in Los Angeles later this year, which will provide low-cost services to the entire family of a child affected by autism.

This month, Holly Robinson Peete will be the keynote speaker at Metro Parent’s fifth annual Living with Autism workshop on April 25. Before her appearance, Peete discussed surviving her son’s teen years, her hope for his future and her mission to help other families affected by autism.

Your son is 14 now. How are the turbulent teen years affected by his autism?

For us, the hardest things are the social circles – you know, those packs of boys that run wild on a middle school campus. We’d been so fortunate to have a great elementary school that had groups of kids who just embraced him and lifted him up, and now that they are in sixth grade and going on to the next level, things are starting to go a little downhill. That’s hard for any teen, but when you are on the spectrum and you have social deficits it’s especially challenging.

Yes, that’s not a fun time for, really, anybody. It’s hard for parents, too, to see their children struggle with that.

It’s especially hard because you have to resist every temptation to run up on that school and snatch these kids up by their neck! When you find people who are insensitive to children with autism and they use all kinds of social media terrorism to wreak havoc on them socially, it’s a whole different level that we didn’t deal with when we were coming up. My son really likes Facebook because he has an easier time socializing without having to make eye contact. In some ways it’s really good for him, but in some ways it’s really challenging. That’s the main issue we’re dealing with now, and then when you tack on typical hormonal stuff – good times!

What, if anything, do you think might help with his peers in this type of situation?

I think children need more awareness, and we need to start younger. My daughter and I wrote a book called My Brother Charlie. The main thing we wanted to do with that was to get kids at an early age and get them to understand the nuances of autism, so that by the time your kid gets to middle school they have already met someone with autism, so they have more compassion and empathy and they don’t become these nasty bullies. A lot of parents are ignorant (as) to what autism is and what it means, and these children grow up in households where there’s not a lot of compassion. I mean, we’re still using the word retard! Parental awareness is really key, too.

You’ve talked a lot about the cost of coverage and that it was a struggle for your family, so it certainly would be for ones without your resources. What needs to change to make the best evidence-based care available to all families?

One of the things that doesn’t need to change is the definition of autism. We don’t need to narrow the scope of who needs what. If anything, we need to broaden our resources, so children all over the spectrum can be treated. More than anything it’s empathy. It’s the overall theme of empathy for what’s going on with these children. Everyone should help, even by spreading the word that autism is treatable and that children with autism have thoughts and feelings. Even if they can’t ultimately express that, they’re there, they can hear you. They need love and need treatment. If we got started there, we would be doing real well.

What approaches have you used with your son that have helped him?

What approaches haven’t I used? We’ve tried everything. In all fairness, I don’t like to talk about what’s worked and what hasn’t because it’s just too different for everybody. Part of the HollyRod Compassionate Care Center for Autism would be making some of these things affordable. We want to give (families) opportunities to try therapies without completely wiping themselves out. It is an expensive diagnosis and as soon as you get it you get this slew of things they need. You really have very few options if you have limited resources, and it’s incumbent on us make the services more available to people.

How has your son’s diagnosis affected the rest of your family? RJ has a twin sister and you have two younger children also. How has this both positively and negatively affected your family?

One of the positives is that they lift him up; they surround him with love. Also, his twin sister, we call her Sister Theresa because she is just so loving with him and caring with him. She takes on a lot of his issues and that can be difficult. The biggest, most important thing is the coat of armor he has around him in terms of a family who loves him and is there for him. The most important thing when you have a child with special needs is that your other children can feel neglected. You have to make sure you make them feel special as well.

As RJ approaches adulthood, what issues are you looking at in terms of his future? What should parents of older kids with autism be thinking about shortly down the road?

The most important thing is a special needs trust, so there is someone to take care of him or her as they approach adulthood. It’s important to speak in a way about your child’s special needs that brings people into the fold. Also, we’re always talking about the importance of hiring adults with autism in your workplace. There’s something like a 90 percent unemployment rate among adults with autism. With our son, we try to really nurture his skills and the things he can do, so that when he’s an adult he may have the opportunity to work. Most adults with autism want to work and they love their work and they really want to show up on time and feel part of community and feel needed. They’re some of the best workers you can find.

What are your hopes for him as he gets older, and has he expressed anything about what he wants for his own future?

My biggest hope for him is that he be able to protect himself – protect his heart, protect his body physically. We sent him to a social skills seminar for teenagers and are teaching him how to deal with social media. That’s the same for any parent of a typical child – you just want your kid to be OK. They have go through their ups and downs and you just hope it’s not anything too serious and that they don’t run into the wrong people.

Why do you think that the African-American community seems to have less awareness about autism?

I think it’s twofold. One, there’s a cultural stigma in the African-American community -not all of us have this in our families, but most African Americans will read this and shake their heads and say ‘that’s my family.’ We tend to really look the other way when it comes to mental health or developmental disabilities. It’s a shameful thing and can be very embarrassing. Plus, there is less access to diagnosis. There is a lot of disagreement in the autism community, but the one thing everyone agrees on is that early intervention is key. Those are things I hope we will abolish in the African-American community, because minority kids are getting diagnosed two to four years later, and that’s not OK.

What do you think can be done to help raise the awareness, so that young African- American children can get the critically important resources and treatment that they need?

Just talking more about it. There are always going to be people like me getting out there and picking off the scab. It’s almost like you have to guilt our community into it as to what a disservice we are doing to our kids and how we are missing a window of opportunity because of the stigma they have. It’s not just exclusive to the African-American community – most men I know of all colors go into denial about this. One of the ways to reach people certainly is in African-American churches. We need to talk to our pastors and our reverends and our clergy to get out and embrace it and have programs within the churches.

It seems like now there’s a lot more awareness of things that are on the spectrum but not full-blown autism. How has that changed in the years since RJ was diagnosed, and what still needs to happen in terms of public awareness and accommodation?

Awareness is definitely higher, and the more things we do to get it out there, the better. We have amazing soldiers in this journey from all spectrums and all walks of life. What’s not being talked about is how difficult it is for families to survive under the financial strain and emotional pressure. That’s what we need to be focusing on in the media. We have got to shift our focus a little bit more towards what our families are experiencing on a day-to-day basis and how we can help them.

Amy Kuras is a freelance writer from Detroit.