BehaviorFacing facts: Science has established that autism is a developmental brain disorder, but experts have not yet been able to pinpoint why the behavioral outbursts associated with this disorder occur, says Richard Foxx, Ph.D. Foxx is professor of psychology at Penn State University, an adjunct professor of pediatrics at Penn State College of Medicine, and co-editor of Making a Difference: Behavioral Intervention for Autism (Pro-Ed, 2001). What experts do agree on is that these behaviors—which may include tantrums, self-injury and aggressiveness—are learned, says Foxx, whose specialty is treating behavioral problems in people who have autism. The behavior, he says, is a way for a child with autism to communicate the need for attention or to escape from an undesirable situation.
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What to do: Foxx suggests parents enlist the services of a board-certified behavior analyst who can help assess the motivation behind the disruptive behavior. (You can find one at http://www.bacb.com/.) For example, he says, a child may have a strong negative reaction to taking a bath and will throw a tantrum whenever asked to take one. However, a behavior analyst might determine that the child was watching a favorite DVD when asked to take a bath, and was expressing frustration over being interrupted. Possible solutions might be to schedule the bath at a different time, and then, using positive reinforcement, letting the child watch that DVD.
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If parents cannot afford a private behavior analyst, Foxx suggests requesting one through the school district or a mental health organization.
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If parents cannot afford a private behavior analyst, Foxx suggests requesting one through the school district or a mental health organization.
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Vaccination
Facing facts: Some parents believe the vaccine that protects against measles, mumps and rubella (MMR) has caused the spike in autism. There's a reason why it's easy to connect the two events, says Tracey Oppenheim, M.D., a child psychiatrist who specializes in treating children with autism at Banner Children's Hospital at Banner Desert Medical Center in Mesa, Ariz.
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Oppenheim says autism symptoms usually appear when a child is between 18 months and 3 years of age. Most children who are eventually diagnosed as having autism initially show gradual abnormal development. However, others appear to be developmentally on track, and then suddenly undergo behavioral changes and lose language skills. "This abrupt turn of events can make parents desperate to figure out what happened to their child," says Oppenheim. "And, if the child was vaccinated during this time, some parents tend to connect the vaccine and the onset of autism because of this coincidental timing." Sometimes, says Oppenheim, some of these parents, either first-timers or those who already have an older child who has autism, therefore decide not to vaccinate their children.
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What to do: Parents needn't worry about vaccines, says Oppenheim. Experts at the Center for Disease Control and Prevention (www.cdc.gov), and at the American Academy of Pediatrics (aap.org), agree that the MMR vaccine is not responsible for the rise in cases of autism. She advises that parents base their decisions on facts, rather than on fear.
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Nutrition
Facing facts: Dr. Foxx says food can be a major issue for children with autism, and for their parents who are bombarded with suggestions of different diets to follow, says. Foxx, whose specialty is treating behavioral problems in people who have autism, says these children often choose their foods selectively, sometimes eating only foods of a certain color or items made by a particular brand. They may also gravitate to foods with a soothing texture, such as puddings. And they may fixate on appearance, rejecting items with, say, bits of green in them. To make matters worse, some children with autism have poor chewing skills, or may refuse to eat solid foods.
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"Parents are so desperate to help their child that they may seize on less-traditional food regimens," says Foxx, co-author of Treating Eating Problems of Children with Autism Spectrum Disorders: Interventions for Professionals and Parents (Pro-Ed, 2007). Some popular but highly controversial food interventions, he says, include gluten-free or dairy-free diets. "The danger is taking a one-size-fits-all approach," he says. "Autism is a complex disorder, and a well-balanced diet is always best for a child."
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What to do: If you're concerned about your child's nutrition, it's best to enlist a licensed and certified professional, preferably one associated with a medical school, to do a full work-up on your child. Many parents have had success broadening their child's palate through behavioral methods, such as putting a tiny amount of a rejected food into a child's favorite food, and gradually increasing the amount. Children can also learn to broaden their palates by working with an occupational therapist.
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Early Screening
Facing facts: Why is early screening for autism so important? The earlier it can be determined that a child has autism, the sooner he or she can get intervention, says Matt Tincani, Ph.D., an expert on autism disorders and associate professor of special education at Temple University's College of Education. And the sooner they get intervention, the more likely these children can make progress.
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The first step in getting a handle on the condition, then, is a screening, says Tincani, who's also the co-editor of Complete Guide to Autism Spectrum Disorders (Prufrock Press Inc., 2009). The results of some screenings are tip-offs that more specialized tests are needed, he says, just as if you had a positive screen for high blood pressure and were sent for further tests to see if you have heart problems. Despite the value of these screenings, it's not always easy for parents, who suspect something is not right developmentally with their child, to get one.
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What to do: Tincani says pediatricians are not always very experienced treating and diagnosing autism and other developmental disorders, and may tell parents that the child will outgrow the concerning behaviors. Therefore, parents who want a screening for their child should be adamant and ask the physician for a referral to a pediatric neurologist, or to another professional who understands autism. Because the screening results can lead to early intervention, it pays to be persistent, he says. It's also imperative to get treatment early because in some states, insurance companies cover specific therapies only until the child reaches age 7, after which time payment must be made out of pocket.
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Sibling issues
Facing facts: A child who has autism requires enormous attention from everyone in the family, says Dr. Foxx. And the strain is acutely felt by the child's siblings. "A large percentage of parents' time is tied up in caring for the safety and welfare of their [child with autism], so parents are not able to give as much time as they'd like to typical siblings," he says. "It's an arduous balancing act," he adds.
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What to do: Be upfront and honest with your other children about why the sibling with autism needs extra care, says Foxx, noting that siblings are capable of great patience and understanding in this type of situation. Often, siblings feel appreciated and respected if the parent asks them for help in caring for the sister or brother who has autism, but it's important to not overburden them with responsibilities.
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School placement
Facing facts: A child's mental and emotional health is often tied to a successful school experience. For children with autism, the right placement plays a key role. For the best outcome, parents of children with autism need to be well informed about how classroom placement occurs, says Dr. Tincani. The good news is the law—The Individuals with Disabilities Education Improvement Act of 2004 (IDEA)—is on your side.
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IDEA states that parents are equal members of the child's educational team, and that the only reason for removing the child from a traditional classroom setting is if the youngster is not making satisfactory progress there. However, many schools act not in the interest of the child, but according to the preferences of teachers who may not want behavioral disruptions in their classroom, says Dr. Tincani.
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What to do: Be realistic about your child's abilities, but don't give in to pressure, he advises. "If you're considering a self-contained classroom setting—where a [child with autism] receives more intensive instruction in basic skills—insist on seeing the classroom. It may be a red flag for parents if, for example, their child is verbal and expressive, and most of the children in the classroom appear secluded and withdrawn. Another alternative, if the child can handle such a transition, is splitting the school day between traditional and self-contained classroom instruction.
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Getting informed
Facing facts: The challenge facing parents seeking information about autism is that there's so much of it. "People are overwhelmed and frustrated with all the information that's out there," says Areva Martin, an attorney in private practice in Los Angeles and the mother of a 10-year-old son with autism. That's the reason she co-founded Special Needs Network, a non-profit organization that provides resources, education and advocacy to families raising children with disabilities in underserved communities (http://www.specialneedsnetwork.net/); she's now president of the organization. And, she adds, because autism expresses itself differently in every child, only a small percentage of the vast amount of information online may be applicable to your child's situation. However, says Martin, many parents are so desperate for answers that they can easily be misled.
Facing facts: The challenge facing parents seeking information about autism is that there's so much of it. "People are overwhelmed and frustrated with all the information that's out there," says Areva Martin, an attorney in private practice in Los Angeles and the mother of a 10-year-old son with autism. That's the reason she co-founded Special Needs Network, a non-profit organization that provides resources, education and advocacy to families raising children with disabilities in underserved communities (http://www.specialneedsnetwork.net/); she's now president of the organization. And, she adds, because autism expresses itself differently in every child, only a small percentage of the vast amount of information online may be applicable to your child's situation. However, says Martin, many parents are so desperate for answers that they can easily be misled.
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What to do: Find a trusted source of information, such as a family doctor, educator or mental health professional, to help you sort out what may be contradictory information, says Martin. While it's important to keep up with the latest studies, she underscores that "collecting information is only a part of the puzzle." Getting the information interpreted, so that it helps your child and provides new options, is just as crucial.
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Becoming your child's advocate
Facing facts: Everyone benefits from a support system, especially those unable to fend for themselves. But, as parents of children with autism well know, the road to becoming advocates for their children is often riddled with bureaucratic obstacles, Martin says.
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What are some of the challenges surrounding advocacy? It's not one-stop shopping, she says, noting that being sent from one government agency to another is pretty much the norm. Another obstacle may be the parents' isolation—many are in denial, grieving and often embarrassed about their child's behavior in public, she says. What's worse is many parents think that things will get better in the future, so they don't even make any effort to become advocates or, sometimes, seek treatment.
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What to do: "Start now and settle in for the long haul," says Martin, whose mantra is "Learn to hear 'no' but don't accept 'no,' and be willing to push the envelope." Reach out to pediatricians, teachers and people at your house of worship, all of whom may have a special expertise that can help your child thrive. However, underscores Martin, having knowledge is not the same thing as having the will to carry on in the face of incredible odds. Patience and perseverance are necessary virtues when fighting for your child, she says.
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