New book is road map to help parents 'find' their child who has Asperger syndrome or high-functioning autism
Two decades ago there was little hope when a child was diagnosed with autism. Parents were often told their child couldn't succeed in school and would have to be institutionalized. Much has changed in the intervening years, particularly in how science understands what today is considered to be a spectrum of autism disorders and how well many children respond to treatment.
However, it still can be a numbing and confusing experience for parents who receive a diagnosis that their child has autism and then must sort through the wide variety of treatment approaches available. Helping parents deal with this experience is why two leading researchers, Sally Ozonoff and Geraldine Dawson, have written "A Parent's Guide to Asperger Syndrome and High-Functioning Autism," which has just been published.
Ozonoff is an associate professor of psychiatry at the M.I.N.D. Institute at the University of California, Davis, and Dawson is a psychology professor and founding director of the University of Washington's Autism Center. Co-author of the book is James McPartland, a UW doctoral student working with Dawson.
The book is designed to be a road map to help parents of children with high-functioning autism and Asperger syndrome through trying times, starting with diagnosis progressing through childhood and into adulthood.
Researchers now know that there is a spectrum of autism disorders affecting people in varying degrees of severity. People with the most severe form, or what is termed classic autism, are often very handicapped and may be mentally retarded. In its most severe form such children are nonverbal, aloof from other people and exhibit very restricted and repetitive behavior.
People with high-functioning autism and Asperger syndrome are not as severely affected. A child with high-functioning autism fits the definition of autism but has such better cognitive and learning abilities. These children have initial difficulty acquiring language but eventually are able to speak at a level appropriate for their age. Children with Asperger syndrome are similar to those with high-functioning autism but have fewer symptoms and have little or no difficulty developing language at the appropriate age.
Dawson and Ozonoff estimate that autism spectrum disorders affect up to 0.6 percent of the U.S. population, upwards of 500,000 people. Two-thirds of those appear to have high-functioning autism or Asperger syndrome.
"We are seeing an increasing number of these children in our clinic, and more cases of Asperger syndrome and high-functioning autism are being diagnosed at a younger age," said Dawson. "The prognosis for many of these children can be quite positive compared to 20 years ago. Today 25 percent to 30 percent of them finish high school and a quarter of those go on to college."
The book's guiding principle is to focus on a child's strengths, not weaknesses, and to have parents channel their child's unusual behaviors and ways of thinking into positive achievements.
"There are many examples of children with Asperger syndrome or high-functioning autism who grew up to be successful adults. The key was their being able to use their strengths," said Dawson. "There is a tendency to focus on children's problems so they don't get a chance to figure out how to use their strengths. These children have unique ways of learning so it is very important to identify a child's learning style. This can help them blossom rather than flounder."
The book takes parents through the diagnostic process, outlines the various treatments available and discusses the impact of Asperger syndrome and high-functioning autism at home, at school and in the social world of children. It also prepares parents to help their children as they enter late adolescence and adulthood. The authors discuss what issues parents are likely to face, what their options are and what is scientifically known so they can make the best decision for their child.
"Autism is a test of unconditional love for parents because in the beginning many children don't give any emotional feedback. The parents' love carries the relationship for a long time," said Dawson.
"Most parents are devastated and the impact on the family is great. Divorce is very common and other siblings sometimes can be neglected. But many parents rally and are able to start on this journey to find their child. They need to know this process is a distance race, not a sprint, and that eventually their child can lead an extremely satisfying and productive life.
"There is no reason why many people with Asperger syndrome and high-functioning autism can't get married, go to college, get a job and give to society. All are reasonable goals that can be reached, but usually with a lot of work," she said.
For more information, contact Dawson at (206) 543-1051 or firstname.lastname@example.org or Ozonoff at (916) 734-6068 or email@example.com
For a review copy of the book, contact Abby Peck at Guilford Press at (212) 431-9800 or Abby.Peck@guilford.com.