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Helping Kids with Mild Autism Departing Utah Psychologist Writes Book for Parents and Teachers

June 21, 2002 — As the number of children diagnosed with autism skyrockets, departing University of Utah psychologist Sally Ozonoff is publishing a new book filled with advice for parents of children with mild forms of the disorder, which impairs social relationships and communication.

“A Parent’s Guide to Asperger Syndrome & High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive,” published by Guilford Publications, is due in bookstores in July. It was written by Ozonoff and University of Washington psychologists Geraldine Dawson and James McPartland.

“The book never would have been written without the lovely people of Utah who opened their families and lives to me,” says Ozonoff, who studied or treated 200 to 300 children with “autism spectrum disorder,” which includes classic to mild forms of autism. She did the work as co-director of the University of Utah’s Autism Specialty Clinic and Utah Autism Research Project.

The publisher says: “This hopeful, compassionate guide shows parents how to work with their children’s unique impairments and capabilities to help them learn to engage more fully with the world and live as self-sufficiently as possible. … The book is packed with practical ideas for helping children relate more comfortably to peers, learn the rules of appropriate behavior, and participate more fully in school and family life.”

An associate professor of psychology, Ozonoff formally leaves the University of Utah faculty on July 1 after 11 years. She already is working at her new job as associate professor of psychiatry at a larger autism center at the University of California, Davis, Medical Center.

The classic definition of autism includes “children who have very low interest in relating to other people,” Ozonoff says. “They don’t seem to have any desire to engage in social interactions. They usually have significant language limitations. Some don’t speak at all and some just repeat others’ speech. They are clearly very delayed in their language. They usually have any number of a variety of repetitive behaviors, things they do over and over again. It could be flapping their hands, or rocking or spinning. … To have classic autism, you have to show a certain number of features in each of three areas: social impairment, communication impairment and repetitive behaviors.”

However, researchers have realized in recent decades that classic autism is just the severe end of a spectrum of disorders that also include milder conditions in which affected children and adults may be intelligent, communicative, articulate and able to learn, but still have some social and communications impairments and other autism-like symptoms.

The milder conditions are known as Asperger syndrome, high-functioning autism and “pervasive developmental disability – not otherwise specified.” Ozonoff’s book makes clear that while researchers and clinicians have tried to distinguish these three conditions, they are similar and indeed may represent one condition that is simply a mild form of autism.

“These higher-functioning versions of autism still involve the same areas [of impairment], but of a different quality,” Ozonoff says. “In the social area, they might not be completely aloof or uninterested in interacting, but may be quite odd in how they try to interact with others. … In the communication area, they may not have any delays in language but they usually have some differences or oddities in their communication style. For example, they might talk too much instead of too little, or their speech might not be really reciprocal, like it’s not related to what other people say. You make a comment and the child answers back according to what they want to say instead of what you asked.”

Children and adults with mild autism also may not have repetitive behaviors, but instead display almost obsessive interest in certain narrow or unusual topics.

“Some kids are interested in movie ratings or animal classifications or sprinkler systems,” says Ozonoff, who had one patient able to identify numerous vacuum-cleaner parts.

Other symptoms that may be seen in children with mild autism include extreme anxiety over changes in routine, unstable mood, poor motor skills, an ability to get along with adults better than with children, poor common sense, trouble making eye contact, difficulty detecting nonverbal cues from other people, a lack of empathy or social or emotional reciprocity, echoing lines from videos or books, and an inability to engage in pretend play.

Many children with autism spectrum disorder also suffer frequent teasing because they have interests unlike other children or otherwise do not fit in, Ozonoff says.

A study in the late 1980s estimated autism affected 1-in-1,000 children – and that estimate was criticized as high, Ozonoff says. But a definitive study published in 2001 estimated 1-in-160 children had some form of autism, with about one-fourth of those having classic autism and the rest affected by milder forms.

“We used to think it was such a rare disorder it wasn’t included in Psych 101 or even in most graduate training programs,” Ozonoff says. “Now it’s turning out to be one of the most common developmental disorders. Everyone needs to know about it. Almost everyone is going to meet someone with autism spectrum disorder whether they know it or not.”

Ozonoff says the reason for the increase is not known, although better diagnosis and environmental factors are possible. (However, a series of recent studies found no evidence to support claims that the vaccine for mumps, measles and rubella might be linked to autism.)

Classic autism first was described in 1943 and Asperger syndrome in 1944, yet the mild forms of autism have been widely recognized among psychologists and psychiatrists only for the past two decades. So there are no good data on how children treated for high-functioning autism do when they grow up.

“The range is from pretty limited: having to have sheltered employment, residential living and significant support the rest of their lives; to pretty independent: going to college, living in a dorm, leaving school and holding down a fairly competitive job,” Ozonoff says. “But even those who do best usually struggle to fit in.”

The new book begins with a chapter defining the various forms of autism, followed by a chapter on how parents should have their children diagnosed, and another on possible causes, including inherited factors and variations in brain structure.

A chapter on treatments makes clear there is no direct treatment for autism – mild or otherwise. But there are many possible therapies – behavioral, social, language, psychotherapy, medication and others – than can help children with mild autism overcome or work around their impairments and have fuller lives. Medication, for example, can alleviate the anxiety often experienced by children with high-functioning autism.

The book’s remaining chapters provide specific, detailed advice for parents, teachers and others on how to help high-functioning autistic children at home, school, social situations and, eventually, as adults. One example includes providing these visually oriented children with written schedules that include pictures and words describing chores and homework.

“It’s important to work with your school to set up an appropriate program for your child,” Ozonoff says. “There’s no cookie-cutter model. You have to figure out what are your child’s particular needs to live as independently as possible – to get a job and handle practical matters like money, time, independent living skills, grooming and getting along with others.”

Parents of kids with mild autism also should provide structured social opportunities so the children learn better how to deal with social interactions.

“You can’t just throw them into Scouts,” says Ozonoff. Instead, provide advice to the group’s leader on how to help the child get along – for example, by giving the leader a small stop sign to display when the child talks too much or by pairing the child with a buddy instead of simply hoping he or she will make friends.

One chapter outlines what Ozonoff says is a key principle, which is to channel some of the unusual characteristics of children with mild autism so they become strengths. Those characteristics include remarkable memory, often-superior academic skills, a tendency to think in visual terms, a preference for following set rules or routines, strong passion and conviction, and greater comfort with adults than with other children.

For example, a child with mild autism may have trouble making conversation with peers. Parents can use the child’s memory skills by filling out index cards with details about the child’s friends: where they live, their likes and dislikes, and sibling’s names. The child can memorize the information, and then use it as a way to ease conversation with peers.

“Learn your child’s strengths and be creative in learning how to make them work for him,” Ozonoff says. “Remember this is a neurological disorder. Don’t take misbehavior personally. And have a sense of humor. They are great kids and really fun and fascinating when they’re not being really hard to deal with. They have a tremendous amount to offer.”