In 1988, all many people knew about autism was stereotyped in Dustin Hoffman’s character in “Rain Man.” Fast-forward
20 years and although autism is still shrouded in mystery, instead of being a relatively rare condition, it now affects one in 150 children—four times more boys than girls. Although the numbers
are rising, autism still is not well understood. For families that include children with autism, it is a daily challenge, but one many are finding solutions, help and hope for. Autism is one of a variety of related disorders that are all classified as Autism Spectrum Disorders. Other disorders include Asperger’s Syndrome, Rett Syndrome, PDD NOS (Pervasive Developmental Disorder Not Otherwise Specified) and Childhood Disintegrative Disorder. All have similarities and differences. Autism is the most common of the disorders, and is what this article will address. It was first identified in 1943 by Dr. Leo Kanner of Johns Hopkins Hospital. What causes autism is not understood. Dr. Francis Shih, a child psychiatrist at Overlake Hospital, says the medical community knows more about what autism looks like than what actually causes it. “Impairment in the domains of communication, socialization and unusual repetitive behaviors before the age of 3 are the hallmark signs,” he says. “Current mainstream theory points to a biological and genetic basis for the condition with possible development of the condition during fetal growth before birth through the first years of life. No environmental cause has been proven by all the current research. There is general scientific agreement of some genetic basis, which I personally believe in. I frequently see autistic traits amongst multiple family members and reported in prior generations.”
Dr. Charles Cowan, a clinical professor in the department of pediatrics at the University of Washington School of Medicine, says there is still considerable debate about whether autism is only a genetic disorder or if there is also an environmental factor. “Most people do think there is an environmental factor,” he says. “But we do not have any idea what that environmental factor might be—though many have been proposed.” (See The Vaccination Debate sidebar for one example.) Dr. Cowan explained there are numerous toxins in the environment—20- to 30,000 chemicals alone have widespread application around the world that haven’t been adaquately studied, he says—that are increasing year after year that have not yet been thoroughly researched, though there are studies currently in progress. Although there is not yet a specific cause for autism, the fact is more and more children are being diagnosed. What researchers have found is that the earlier it is diagnosed and the earlier children get into treatment the better they respond. One problem is that although parents know something isn’t right with their child, too often pediatricians aren’t trained to look for or don’t have time to look for signs of autism, and fail to recommend an in-depth evaluation of the child. Instead, parents might be told all
children develop at different rates and parents should wait and see. This means often children aren’t diagnosed until they enter preschool or kindergarten, missing what many believe is an important window for therapy before the child is 5 years old. Club members Lisa Vipond and her husband, Bill, are just one of many examples of the above scenario. Lisa says when their middle child, Lucas, was around 18 months old it became apparent something was different. “We started getting together with other families that have kids about the same age and he was just behind,” she says. Instead of the typical toddler behavior of playing next to peers, Lucas would take a toy to a corner of the room and play by himself. His favorite toys were cars, trucks and airplanes. Lisa says if one of those was not available to Lucas, he would scream until one was produced. She says she felt something wasn’t right but friends and their pediatrician said all children develop at different rates and Lucas can’t be compared to his older brother, Willi, who developed right on schedule. Finally, Lisa says her parents mentioned they were concerned and Lucas then started speech therapy. The therapist, who had experience with children with autism, suggested that Lucas be evaluated.
Lucas’ red flags fit with a typical child with autism. “The term ‘odd’ is a common descriptive word used by parents and teachers in describing autistic kids,” says Dr. Shih. Children with autism “tend to engage in isolative play or ‘parallel’ play—imitating others rather than interacting with them. In group settings, they are almost always on the periphery.” While “odd” is a good word, for parents worried that their child might have autism it isn’t enough. Children with autism miss developmental milestones or sometimes, hit a milestone like talking early, then suddenly lose that ability. For example, a typical 15-month-old isn’t saying meaningful words yet, but can make a
Lisa says they encourage Lucas to do the same things his older brother, Willi, does.
parent understand needs by pointing or turning his gaze from a toy to the parent, back to the toy. A child with autism maybe isn’t pointing and instead of that meaningful gaze to get mom or dad to understand he wants a toy, he might just get upset. Pretend play is another, more apparent, difference. A typical child will hold toy bottles or spoons to a stuffed animal’s mouth, pretending to feed it. A child with autism might just take the toy bottle and turn it over and over, completely ignoring any attempts by a parent to engage in pretend play. These signs of autism can be very hard to spot or might not be understood by parents. Lisa did notice Lucas would take a toy car, flip it over and spin the wheels continuously. She says she thought he was just entertaining himself. This, however, is a common activity in kids with autism. Lucas was perseverating on the toy car—repeating the stimulus of a spinning wheel over and over. Whether it is rocking, waving hands, spinning or flipping toys or lining up objects, children with autism tend to repeat actions without stopping. Once the Viponds knew they had to get Lucas evaluated, the search for a facility and doctors started. Lisa says she ended up on four different waiting lists, and was told it would be nine to 13 months before Lucas could be seen. Once he was seen, the diagnosis was autism. Lisa says they had him evaluated four times by different specialists and all agreed her son needed to continue the speech therapy
he was already getting and add on more therapy—four days a week in school and two days a week at home.
Treatment for children with autism is really as varied as each child’s specific symptoms of the disorder. The most studied treatment is applied behavioral analysis, or ABA therapy. This, says Dr. Shih, “is generally regarded as the most effective intervention in terms of improving social and communication skills in autistic individuals.” In addition, many children with autism, including Lucas, receive speech therapy, occupational therapy and social skills training. Lucas is in therapy six days a week, four in school and two at home. In addition to the above therapies, Lucas also receives a combination of ABA and Pivotal Response Training. Lisa explains the PRT is a more naturalistic approach to behavior therapy. When watching Lucas in a
The Vipond family, clockwise from top left, Lisa, Willi, Bill, Carolyn and Lucas.
session of PRT, it looks like he is just playing with his therapist. He is really working on his cognitive response development, motor skills development, turn-taking skills, pretend and suggestive play skills and problem resolution. Lisa says because the therapy is playful and not at a table, Lucas’ attention and interest lasts longer. When a diagnosis of autism comes, parents can feel like the floor has dropped from under them. Lisa says she and her husband felt like they had been kicked in the stomach. And often after the diagnosis, parents aren’t given much direction. One resource, however, can be found on the Autism Speaks Web site. Called the 100 Day Kit, it includes information for parents about what to do in the 100 days following an autism diagnosis. It is also important to reach out to the autism community. Talking to doctors, specialists and other parents will provide recommendations for professionals and therapies that might be the most effective. One thing to remember, says Lisa, is that you do not need a diagnosis to start a child in therapy. Although they started Lucas in speech therapy before he was diagnosed with autism, they could have started him in other programs, too, but Lisa says for some reason, she thought she needed a diagnosis first. And because it has been shown that early intervention is key for autism, and there are often months-long wait lists to get an evaluation, parents that are worried about their child should consider starting therapy right away.
In addition to therapy, there are other treatments some parents have found help their children. One popular one, in particular, is called the “Autism Diet,” or a gluten-free and casein-free diet. The gluten- and casein-free diet means no wheat or dairy products. While this diet does not have much support in the medical community and is only now being studied, some parents, like Lisa, have found it does change their child. At first, she says she was skeptical about trying the diet. It doesn’t work for all children and it isn’t easy to do. Once Lucas did start the diet, which is monitored by a nutritionist, and removed all gluten and casein from his body, Lisa says it was like he was an entirely different child. Now, if he does eat something containing gluten or casein, Lisa says he goes into an almost trancelike state and completely changes. For Lucas, the diet seems to have an effect. That is not always the case, and little research has been done regarding this diet. Other children with autism will display very detrimental behaviors, like
Temple Grandin, Ph.D., is an animal scientist who is also autistic. She has written a number of books about her life and growing up with
autism. Two to check out: “Emergence: Labeled Autistic” and “Thinking in Pictures and Other Reports from My Life with Autism.”
Local resources for families that have received
an autism diagnosis include: FEAT (Families for Effective Autism Treatment) www.featwa.org ASTAR (Autism Spectrum Treatment and Research) Center www.astarcenter.org Northwest Behavior Associates www.nba-autism.com
scratching or other forms of self-harm, or have other behaviors that severely disrupt their lives. For these cases, doctors might try medication to prevent the activity, says Dr. Shih. For Lucas, his therapies are working. Lisa says when he was first diagnosed he was tested in nine different areas and placed at an age for each category. He was 31/2 when he was diagnosed and at his lowest, scored at a 9-month-old level. His best category put him at 23 months. In his latest round of tests, Lisa says Lucas’ base line is now at 3.2-4.3 years of age. Lucas is able to ask for what he needs, a huge accomplishment for a child with autism. “We’re really happy with how he’s developed,” says Lisa. “We know we have a long way to go with him, but he’s come a long way in just a year.”
Currently, there is a lot of buzz in the autism community about childhood vaccinations and whether it is contributing to the drastic rise in the number of children with autism. The preservative thimerosal, used in vaccines, was thought at first to be a cause, since it contains mercury and children with autism often have higher levels of metals in their body than children without autism. That preservative has since been removed from virtually all U.S. vaccinations (some flu shots still contain the preservative), yet the number of cases continues to rise. Dr. Cowan says thimerosal was removed in 2001, and if it had been a cause, cases of autism should have dropped dramatically. Instead, numbers have continued to increase. Other people believe it’s the sheer number of vaccinations children get and the fact that they often receive “cocktails” of vaccines to reduce the number of shots. Some also believe the MMR (measles, mumps, rubella) vaccine might be a cause. Many parents with children with autism say it was after a vaccine that they “lost” their child. Actress Jenny McCarthy has a son with autism, and she says it was after a shot that he retreated into his own world and started showing signs of the disorder.
Dr. Cowan says reducing the number of vaccinated people for various diseases is dangerous, but at the same time he understands why families are frightened. However, he explains, “The human body, and even babies soon after they are born, is exposed to hundreds of different substances—bacteria, viruses, chemicals, food substances. The immune system is very strong and used to dealing with multiple things at once. Nonetheless, I respect families’ concerns and they ought to talk over these issues with their doctors.” Lisa says they didn’t notice if Lucas changed after shots, partly because he was often sick as a baby—his big brother would bring bugs home from day care. Because babies with frequent ear infections can have speech delays and other developmental delays, and because their pediatrician didn’t believe there was anything to worry about, Lisa says they tried not to worry too much about it. She does, however, suggest that any new parent should research
and think about vaccinations to make an informed decision about whether to have their baby get shots. Some experts say to consider avoiding the vaccination “cocktails” and spread out shots so babies have time to recover. When asked about the vaccination debate, Dr. Shih said that none of the theories have been proven, and he believes a valid theory is that many people are waiting until they are in their 30s and 40s to have children, which has been proven to increase the risk of birth defects and developmental disabilities in children born to older parents. Dr. Cowan, however, says there has been no evidence of this. “At the moment maternal age has not been felt to be a valid risk factor.” When considering vaccinations, Dr. Shih says “I recommend that children be vaccinated by their pediatrician guidelines. The Centers for Disease Control and the American Pediatrics Association recommend following standard vaccination schedules for children—following their thorough reviews of current data in the United States and Europe, which found no link between vaccines and autism.” Dr. Cowan urges parents to speak with their doctors about the issues, and says there needs to be a balance between public good and individual concerns. Vaccines are not 100 percent effective and if more people are not vaccinated there can be more occurrences of disease, putting people at risk.
