A Child's View Of His Autistic Brother
Jace Richards knew something needed to be done.
His younger brother Justin was getting teased by other kids and had been labeled as a brat by some members of his extended family. The youngest of five brothers, Justin was prone to emotional meltdowns and other seemingly strange behavior – such as spinning in circles until he could no longer stand and covering his ears at the slightest noise. Justin was getting a lot of attention for all the wrong reasons.
Reading the Signs
Like any good big brother, Jace wanted to stand up for his little brother and make sure that everyone knew the truth behind Justin's actions. He wanted people to be nicer to Justin; he wanted the teasing and the judging to stop. Along with his mother, Donna, he did some research at libraries and bookstores in his hometown of Gaylesville, Ala., and found that no one was saying what he needed to hear and what he wanted others to know.
So he decided to say it himself.
At the ripe old age of 7, Jace wrote a book. Titled My Brother's Keeper: A Kindergartner's View of Autism (MBK Publishing, 2005), Jace tells the story of Justin's autism and how his family has dealt with it. By sharing his experiences, Jace wanted people to understand autism better and to treat people like Justin with more respect. Though the book started as pictures taped onto pages made of construction paper, today's hardcover version has garnered attention from special education teachers and readers facing all types of disabilities and has even been adopted by a local school system to help teach lessons about kids who are different.
When Justin was born, Donna and husband John were simply grateful for a quiet baby, as future-author Jace had proven to be quite a handful in his day. "Everyone would say, 'Oh, what a beautiful baby. He is so quiet!' But when Justin went to daycare, his teacher noticed that he did not want to play with the other children. At story time, he would sit with his back to the circle. He was often alone, playing quietly with a toy or two," she says.
After Justin turned 2, other tell-tale symptoms began to manifest, including spinning, sensitivity to noise and an aversion to the feel of certain textures, like sand. Temper tantrums followed soon after. At first, their pediatrician attributed Justin's behavior to shyness and immaturity. After frequent visits over the next few weeks, the doctor diagnosed Justin with severe autism.
"We didn't know anything about autism," says Donna. "The only image we had [came] from the movies Rain Man and Radio. I asked about therapy and medications, but the doctor told us that there was nothing we could really do. It was a very sad ride home."
Donna and Justin visited several more doctors, but the news remained basically the same. That was not good enough for Donna, and she began researching options, not only to help her son, but to advocate for autism awareness in general.
With help from everyone from chiropractors and massage therapists to a naturopathic doctor and the traditional medical community, Justin Richards is doing quite well. "He's not cured and a cure may never exist, but he is a far cry from where we were told he would be," she says. "Living day-to-day with an autistic child can be challenging, but we would not trade it for the world."
Diagnosing the Disorder
Though Jace's authorship of a book is a unique step, many families face the fear and confusion that comes with a child being diagnosed with autism. While there is a greater awareness about autism today, that wasn't always the case, says Dr. Katherine Loveland, a professor of psychiatry and behavioral sciences at Texas Medical School in Houston, Texas.
"Autism is mysterious, and it is hard to treat," Dr. Loveland says. "In the past, diagnoses of autism often were not made until the child was 5, 6 or even older, in part because clinicians were using different criteria for making diagnoses. However, today there is more agreement about what autism is and how to diagnose it." Better diagnosing means that autism rates are increasing, but it also means that the children who need help are getting it sooner.
Children with autism often display a variety of symptoms involving social interaction, communication and repetitive behaviors. These behaviors can usually be detected during a child's second year, when he may begin demonstrating poor social relatedness and delays in play and communication. However, this is not always the case.
"Other children are reported to be 'different' from birth, showing signs such as a reluctance to be held, lack of interest in people and difficulty being comforted," says Dr. Loveland. On the other end of the spectrum are the children who do not display the typical delays in language and intellectual development; they may be identified has having behavioral problems or ADHD because of their uncooperativeness and hyperactivity. While these issues are often present in children with autism, Dr. Loveland believes that they can overshadow the diagnosis of autism and delay proper treatment.
While there is no standard treatment plan for autism – due to the widely varying needs of the children who have the condition – that doesn't mean that nothing can be done. Many children benefit from a treatment called Applied Behavior Analysis (ABA), which breaks behaviors down into small, manageable chunks and teaches them bit-by-bit. This approach has proven helpful in reducing tantrums and repetitive behaviors. Other approaches may include speech and language therapy, social skills training and physical therapy. Medication may also prove helpful, especially for children who have problems with anxiety, depression or acting-out behavior.
"I believe that no one treatment has the answer to everything, and I would recommend that parents consider combining approaches to meet their child's individual needs," says Dr. Loveland. "Often parents will get different viewpoints from professionals in different fields (medicine, psychology, education, etc.), which can be confusing. Parents should read as much as possible in order to be informed consumers."
While there are a great many books out there to help parents and families cope with the diagnosis and treatment of autism, only one has been written by a 7-year-old sticking up for his little brother. His own small words accurately describe the big issues, and both parents and children can benefit from his perspective, especially if they read it together.
"I am glad that the book is out so now when Justin is bad, people will know he does not do it on purpose," says Jace Richards. The Richards family has pulled together as a result of their shared ordeal. In addition to My Brother's Keeper, they maintain a Web site, www.mybrotherskeeper.biz, and hope to assist in the building of an autistic children's wellness center and a day camp on their farm. In the meantime, Donna and Jace's mission is a simple but crucial one: "There are still a lot of people out there who are uneducated when it comes to autism," she says. "I think the most important thing is to let parents know that there is help out there."