Photo Credit: Courtesy of the Newport Daily News
One out of every 110 children has autism or an autism spectrum disorder (ASD), a group of disabilities that cause major social, communication, or behavioral challenges, according to the Centers for Disease Control and Prevention (CDC). Although symptoms of ASDs are usually present before age three, the average age of diagnosis is about 4 1/2. Boys are four to five times more likely to be diagnosed with an ASD than girls. Girls are typically diagnosed about five months later than boys, a potentially problematic time lag since early intervention is key to helping children with autism. Many children with autism also have co-existing medical conditions that may further affect normal functioning. The causes are not clear, and may even vary from child to child, and there is currently no cure for ASD. There are treatments ranging from behavior, speech, and occupational therapies, special diets, medication, alternative therapies, and biomedical treatments that address underlying physical problems that many children with autism have in an effort to improve their autism symptoms, too.
Wendy Fournier, a Rhode Island mom of three, is a founding member of the National Autism Association, an advocacy group dedicated to educating and empowering families affected by autism and other neurological disorders. A Web site designer, Wendy teamed up with two other moms to start the organization and create the Web site. She describes her experiences raising a daughter who has autism, and her ongoing battle to help her.
Q: When was your daughter diagnosed with autism?
A: Aly was diagnosed with autism when she was 2 1/2. She is ten now. Up until she was 18 months old, she was developing normally, reaching all of her milestones. Then we started noticing some odd behaviors. She stopped making eye contact and responding to her name. The language she had been using previously ended and she became non-verbal. She walked on her toes, and she would rock back and forth repetitively on the couch. She became obsessed with spinning things. She would hold her toy car, spin its wheels and watch them. She didn’t play appropriately with toys; she had no imaginary play.
At that point I didn’t know anything about autism and I didn’t know any parents whose children had autism. We became concerned when my husband stumbled onto something online that said toe-walking could be a sign of autism, and then we started to read that some of her other behaviors could be symptoms, too. When she was 2 1/2 we took her to a developmental pediatrician for an evaluation and although we pretty much knew what we were dealing with, it was still devastating to hear the diagnosis: Autism. I crumbled. I fell apart. When I finally stopped crying, I resolved to do everything I could to help her, to figure out what was going on and to fix it.
Q: What therapies have you tried?
A: The doctor recommended a behavior therapy called applied behavior analysis (ABA) and so we started that right away, and Aly has had a one-on-one aide throughout her schooling. I had read about the benefits of different diets for children who have autism, and although my doctor told me not to bother, that they were a waste of time, we did try a diet that was free of gluten [a protein found in grains including wheat, rye, and barley], and casein [the protein found in milk and milk products], and eventually we also removed all white flour and starch from her diet. The diets helped with some gastrointestinal problems Aly was having (which are common in kids with autism), and she started sleeping better and was less hyper, but they didn’t help with her cognitive issues; she still wasn’t talking. Over the next few years we tried other therapies, including hyperbaric oxygen, dietary supplements, and chelation therapy to rid her body of metals including mercury, but she still wasn’t talking.
Q: Did you ever feel like giving up?
A: Last year I came the closest I’ve ever been to losing hope. I had been fighting this non-stop, and felt like I wasn’t getting anywhere. I was exhausted, discouraged, and horribly depressed. Autism takes its toll on a family in so many ways. Financially, it has been devastating for us. Although some of Aly’s treatments have been covered by insurance, many of them have not. Also, it’s very stressful for a marriage. My husband, Paul, and I almost never go out together because childcare is a real issue. You just can’t hire the high school kid down the street to come in to babysit. If there’s a movie that we both want to see, I’ll go to it one night while Paul watches the kids and he’ll go to it another night. But, the worst part is not being able to communicate with my daughter, not being able to help her if she’s hurting, not being able to understand her or have her to understand me.
Q: What has changed to give you hope again?
A: Around the same time that I reached my lowest point and was feeling really depressed, we had begun a new treatment for Aly. Her physician had read a study on autoantibodies in the brain and a link to Landau Kleffner Syndrome, a disorder which causes children to suddenly lose their ability to talk and understand language, and suggested that Aly have a blood test. The blood test revealed that Aly was producing antibodies to two different types of brain cells and that she had brain inflammation. She was given a diagnosis of neuroimmune encephalopathy. The therapy is something called IVIG, intravenous treatments with immunoglobulin [a protein that plays a vital role in the immune system].
One day about six months ago, a nurse was here giving Aly her IV treatment and Aly pointed to some cards that had letters on them and she said the letters. The nurse and I looked at each other in shock. It was a miracle. I ran out to the store and bought some foam letters and held them up and said, “What’s this?” Aly rattled off every single letter. I did the same thing with foam numbers and she said all of them. When I showed her flashcards with pictures on them, she started naming things such as “ball,” “cat,” “dog,” even “xylophone.” If she couldn’t say it on her own, I would say it first and she repeated it. Since then, she has been getting the same therapy and has continued to improve. Yesterday, her speech therapist told me that Aly said a complete sentence, “I want to swing.” Her receptive language is getting better, too. I can now say to her, 'Aly, take that paper and throw it into the garbage,” which is a two-part instruction, and she will pick up the paper, walk into the kitchen and throw it away. She never used to be able to do that. It is thrilling to see the improvement. This was the first Christmas that I didn’t end up crying. In the past, holidays and birthdays would be devastating because we’d have people over to celebrate and Aly wouldn’t pay attention or acknowledge anyone and she wasn’t interested in presents. This Christmas, Aly actually got excited and opened her presents for the first time. It was such a gift for all of us. One of the things that changes in your life when you have a child with autism is that you find opportunities for celebrating things that everybody else just takes for granted.
Q: What advice do you have for other parents who have children with autism?
A: Follow your instincts, follow your gut. Talk to other parents who are facing the same struggles you are, and read as much about the condition as you can, and never give up hope. My hope for my own daughter is that she will continue to improve, that she will one day have friends and go to her school prom. My hopes for her are very high.
Editor’s Note: Although autoimmune conditions such as Aly’s have been linked to autism in a subgroup of patients, IVIG therapy for children with autism is considered experimental and its safety and effectiveness for treating autism have not been proven. In one study, neurologists at the University of Illinois found that of 10 children with autism who were treated with immunoglobulin, only one showed significant improvement in autism symptoms. His symptoms returned when IVIG therapy ended.