Interviews
When Autism Strikes Home: It's a Family Affair
By Holly Robinson Peete
I experienced the elation every mother feels when she holds her newborns for the first time. When my twins were born, it was a double blessing — two beautiful children, a boy and a girl, both as sweet as their butterscotch cheeks.
RJ, my oldest son, was born two minutes before his sister, Ryan. Like many twins, mine were close from the very beginning. It was as if they had a language all their own. Even as infants, they seemed to understand each other's impulses and desires. When RJ cried, Ryan cried too. When Ryan wanted milk, so did RJ. When something happened to cause one of them giggle or gurgle, the other one giggled and gurgled along.
When RJ and Ryan began to talk, the beauty of language swept them up into the joys of making words and expressing themselves to me and to each other. While many parents can't wait to hear their children say "Mama" or "Da-da," RJ's very first word was "cow." Delighted with himself, RJ turned this into a singsong: "Cow, cow, cow!"
Ryan would join in, and the two of them were a chorus of "cow, cow, cow!" It didn't matter to me and my husband, Rodney, that our twins were talking about a farm animal before they were calling out to us. What was most important — and wonderful to witness — was that RJ and Ryan were both very talkative toddlers who were hitting their developmental milestones right on time.
Then, one day, when the twins were just two years old, all the chatty fun ended very abruptly. It seemed as if a plug had been pulled on RJ's joyous ability to speak and giggle with his sister. Ryan's development continued typically. She pointed at stars in the sky, birds, and high-flying planes. But RJ had changed. He'd become withdrawn, sullen, and distant. He was locked up in a place I couldn't reach, though I tried to rouse him by calling his name loudly when I wanted to get his attention. I took to screaming, mostly out of feeling helpless.
"RJ, RJ, RJ!" I would call.
After taking RJ to a series of specialists, we got the diagnosis that RJ had autism. It was the year 2000. RJ and Ryan had turned three. The medical community defines autism as a neurobiological disorder. The Centers for Disease Control and Prevention issued some startling statistics on the disorder: 1 in 110 children in the United States has an Autism Spectrum Disorder.
When I learned of these statistics, I asked myself why my child had to be "the one." My husband and I were angry and confused and felt powerless to help RJ. This was underscored by members of the medical community and our social circle who didn't fully understand autism and its effects.
I will always remember what Rodney and I have come to call the "never" day. After enduring a battery of tests for RJ, we sat with a specialist who told us our son would never speak to us like a "normal" child, that he would never engage in real conversation with us or Ryan, and that he would never say "I love you" without being prompted.
Well — I have never experienced such pessimism from a doctor! When we met with her, it was a chilly afternoon (made even colder by the woman's icy office and less-than-warm bedside manner).
Some time after that meeting, Rodney and I made a decision — we would never allow someone to rob us of hope of a meaningful life for RJ and never, ever give up on finding the best treatments for him. Thankfully, soon after that awful day, we were blessed with a team of caring professionals who have rallied around our family and RJ. We call these men and women "Team RJ" and have taken to chanting, "Go, Team RJ!"
At age thirteen, RJ has grown into one of the loveliest and most charming kids! He's intelligent, playful, thoughtful, and funny. He's an ace swimmer and can play the piano and guitar with passion and verve. Adolescence has brought with it some new hurdles, but our boy has checked so many of those nevers off of his list.
Like any siblings, RJ and Ryan have had their challenging times, but the two of them are as close as ever. And they're back to talk, talk, talking — and sharing that special connection that twins have. We have two younger sons, Robinson, age six, and Roman, age eight, and two dogs, Harriet and Freddie. So we're a busy and boisterous family.
When Ryan and RJ were in the fourth grade, Ryan discovered that other kids and their parents had very little knowledge about autism and its affects on individuals and families. Ryan was constantly sticking up for RJ at school, and I found myself frequently fielding questions from other parents who just didn't know any better. For example, one mom worried that autism was contagious, so would refuse to invite RJ to playdates!
This is when Ryan came to Rodney and me, and showed us a wonderful program she'd developed on her own, called "Ryan's Autism 101" — a checklist of very practical advice and facts about autism that Ryan shared with our family, then invited Rodney and me to present to her classmates. We now offer "Ryan's Autism 101" to families struggling with a new diagnosis of autism and to those who have no autism in their immediate families but who have friends or schoolmates affected by autism. These ideas are outlined in the children's book I coauthored with my daughter, entitled My Brother Charlie. There is also helpful information in a book for fathers by my husband, Rodney Peete, entitled Not My Boy: A Father, a Son, and One Family's Journey with Autism.
Here are some ideas we have found most helpful.
• Social connection can be challenging for people with autism. If someone who has autism doesn't respond or make eye contact right away when you speak to them, it doesn't mean they're being rude. Often they don't like to be touched. Don't take it personally. Help them by being extra kind. Go the distance. Don't give up on your chance to make a friend.
• Many have trouble making friends, but it's even harder for those with autism. Include people with autism even more than you would others. If you give them time, you'll discover that they're just human beings with real feelings. And, like every human being, they want to be included even if they cannot verbally express it.
• We are all special in our own ways. Rather than point out what someone doesn't do well, focus on what they do well. Explore and praise the strengths, and acknowledge that everyone has strengths and weaknesses.
• People with autism can be exceptionally smart, but their brains are wired differently. It can take them longer to process information. Please be extra patient.
• If you see a child struggling or having a tantrum in a public place, such as a supermarket or airport, don't judge. Often that child is not being "naughty" but might have autism. Offer a smile or support to a mom or dad who could really use it!
• For more information, contact the HollyRod Foundation, an organization to help children with autism gain access to affordable treatments and therapies. HollyRod Foundation, 9250 Wilshire Blvd., Suite LL15, Beverly Hills, CA 90212.
www.hollyrod.org
Remember, a person may have autism, but autism doesn't have them.
Actress, Author, and Advocate Holly Robinson Peete has devoted her life and career to the service of others. She is a board member of Autism Speaks, and travels internationally to advocate on behalf of autism causes. She has worked tirelessly to help families everywhere who are raising children with autism. Ms. Peete is the wife of former NFL quarterback Rodney Peete, and the working mother of four children. Inspired by the journey of her dad's struggle with Parkinson's disease, and by her son's autism, Ms. Peete and her husband founded the HollyRod Foundation, dedicated to providing compassionate care to those suffering with debilitating life circumstances like Parkinson's disease and autism. She is currently a cohost of CBS's The Talk, the new hit daytime talk show with an emphasis on motherhood.
