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How to Prepare Teens with Asperger’s Syndrome for Life’s Challenges
By: Catherine H. Knott, Ph.D.--An Interview with Sue Coble, Ph.D.
Raising a child with Asperger’s syndrome presents challenges for parents at every stage of their child’s development. Sometimes parents find themselves struggling to help their child choose a course of study and career path. Should young people with Asperger’s be advised to avoid certain pursuits that depend heavily on social interaction? Or should they be coached to try, even if jobs in those fields may be more difficult for them?
Sue Coble, professor of psychology at the University of Alaska and Kenai Peninsula College, answered these questions and others, based on many years of Asperger’s and autism research. Originally studying Asperger’s from a theoretical and experimental psychology perspective, Dr. Coble, who has a doctorate in experimental psychology, began teaching developmental psychology in a small community in Alaska several years ago. In our recent interview, Dr. Coble discussed what parents can do for their children with Asperger’s in the later stages of development, from late elementary school through college.
Advocating for Children with Asperger’s
According to Dr. Coble, there is a real gap in the support available to children with Asperger’s because parents don’t know how to advocate for their children in the schools. Many parents of children with an individualized education plan (IEP) feel they have to fight the school to advocate for their child. Even if a child has been independently assessed, the school usually wants to do their own testing. The child usually already knows he is different, and may begin to feel frustrated at being pulled out of the classroom for additional testing.
Schools are not allowed to tell the parents everything they learn about the child, Coble notes. Parents have to trust that the school has their child’s best interest in mind. This lack of complete openness between school and parents often means there is a piece missing – the training in advocacy. In some cases, volunteer parent trainers help supply that missing piece by coaching other parents with advice like, “This is what the school district is going to say to you, and this is what you say back.”
Some parents opt to hire private services. Parents have a right to receive services for children with Asperger’s syndrome, and the school has an obligation to provide services. While the services provided vary from state to state, and school district to school district, it can be frustrating for the parents and the student since children fall in different places along a wide spectrum of Asperger symptoms.
For example, professionals working with the child may not give her credit for the social skills she already has, especially if they do not meet with the student often enough to appreciate her individual talents and challenges. Because a child might be pulled out of class separately by a speech pathologist, occupational therapist, and other professionals, it is important that all the professionals working with the child are working well together on an Individualized Education Plan (IEP) team.
Acknowledging Individual Differences on the Autism Spectrum
Dr. Coble does not have an issue with putting Asperger’s on the autism spectrum, but she is concerned about the acknowledgment of individual differences in the spectrum. For example, nonverbal learning disability (NLD) is starting to get attention. NLD has some, but not all, characteristics similar to Asperger’s. Coble is concerned that children with nonverbal learning disabilities may be getting the Asperger’s stamp when it may not be helpful to them.
“It may be better for the children if we keep the individual categories individual,” says Coble. “A good classroom teacher figures out her students as long as class size is reasonable.”
Coble hears from parents that they encounter a lot of caring professionals, but if they get one individual who does not understand their child as an individual, it can be really tough. Parents need to know whether the school has money to provide for an aide in the classroom. Nonverbal learning disability is not in the DSM yet, so it is often unclear whether children with this condition will even qualify for an IEP.
To Mainstream or Not to Mainstream?
The benefit of keeping children with Asperger’s in mainstream education is the exposure to neurotypical kids, Coble says. But she cautions that children with Asperger’s syndrome can be bullied or taken advantage of more easily. Kids who have trouble picking up social cues can be victimized, or even suffer sexual assault. The first concern of parents must be for their child’s safety. If parents choose to home school, for instance, their children will be safer – but they may not be adequately socialized.
Coble says there are pros and cons both ways, but the research indicates that the programs helping with social skills and the socialization with neurotypical peers is helping.
The other issue is academics. Are children with Asperger’s so bright they are bored or underachieving? Is the material both chronologically and skill appropriate? For example, young people with Asperger’s may be very good at reading, but may have trouble identifying characters’ motivations in a story.
Social Anxiety and Bullying
One of the main issues Coble sees children and teens with Asperger’s syndrome facing in school is social anxiety. Youth with Asperger’s are going to have different levels of awareness. If they perceive that they are different and being treated differently, or if they are being bullied, they can develop social anxiety or depression.
If parents want to advocate for their kids, they need to be sure they are safe in school and in other social situations, says Coble. In some communities, including the one in which Coble works, the special education teachers who deal with Asperger’s have books they give to parents to read to their child’s class. These books present information specific to certain disorders, or more generally about special education. The information often helps classmates understand the disorder, think about their peer differently, and be more accepting and tolerant. Separate programs that help children stop bullies in their classes and avoid bullying behavior can make a difference for children with Asperger’s Syndrome as well.
How Can Parents Help Teenagers with Asperger’s?
The social scene in high school can be cruel. It may be hugely upsetting to a teenager if she doesn’t fit in. As children reach adolescence, parents have the same worries about bullying, sexual assault, and sexuality, but the stakes are higher. No parent wants their child to be taken advantage of by their peers.
Temple Grandin, the renowned writer, when interviewed by Oliver Sacks, couldn’t imagine being married or having a life partner. Yet she did have relationships with adults, and commented on them in an enlightening book for people with Asperger’s syndrome or autism, The Unwritten Rules of Social Relationships. Grandin wrote the book from an “anthropologist on Mars” point of view. Dr. Coble thinks books by teenager Luke Jackson, who has Asperger’s syndrome himself, can also be very helpful for teenagers with this disorder.
Families are in the best position to provide consistent social skills training because of their ability to provide constant feedback to the family member with Asperger’s. They help, and that is huge, says Coble. Through a supportive family environment and interaction with neurotypical peers and siblings, teenagers with Asperger’s can learn a great deal about how to navigate the social landscape.
Progressing Toward College and Employment
Coble has several suggestions for parents and teenagers with Asperger’s syndrome as they move toward adulthood and away from their supportive family environment. She suggests joining the OASIS group, an online Asperger’s syndrome group, or finding other groups online. She also recommends a book, not specific to Asperger’s, by Richard Lavoie, It Is So Much Work To Be Your Friend. However, she cautions that parents and teens have to be careful not to buy too many books. Instead, she suggests that parents spend extra time working actively with young adults who know the rules, but don’t see the shades of gray.
Parents can then discover specific ways to help their child avoid people who may take advantage or who are predatory in terms of sexuality, money, or possessions. Those are areas where young people with Asperger’s syndrome are particularly vulnerable. Mainstreaming can be helpful in this regard, because if children with Asperger’s have to cope with complex social situations from first grade onwards, by the time they get to college they would have some idea of how to handle situations like these, Coble says.
Helping Young Adults with Asperger’s Make Career Choices
Choosing the best career option is an interesting issue for young people with Asperger’s. While these young people should not be forced into activities that are uncomfortable for them, they do need exposure to different social settings to gain social competence. Depending on the parents’ rapport with their child, they may be able to help shape their teens’ choices and find careers where social skills aren’t the primary focus. Some families will be comfortable having open discussions or making suggestions. Luke Jackson’s family is warm and accepting, Coble notes, and their support helps him accept himself.
Along the way, parents should try to help their child adapt and advocate for himself, according to Coble. Young people and adults with Asperger’s need to reach a place of self-realization where they both understand the nature of their difference, and can advocate for themselves. Parents may then be able to suggest careers in computer programming, academic work, or running their own business, where it is advantageous to be different.
Taking Care of the Family
Dealing with Asperger’s syndrome puts stress on the parents, the family, and marriages. People have to take care of themselves, Coble emphasizes. In one book she read, a woman says, “He’s supposed to have six different therapies, but we chose to do just one this semester.” Coble notes that it helps both the parents and siblings when parents choose to cut out extra therapies and focus on just one or two, so the kid can be a kid sometimes.
The same strategy may work well at school, where the stress of too many pullouts may disrupt a child’s classroom experience. Parents should be careful consumers if they are coping with many additional meetings with teachers and parents. The neurotypical children in the family can feel like no one pays any attention to them. These siblings may be the best asset the child with Asperger’s has, providing support and running commentary about how to behave socially.
Coble notes that parents should also trust their instincts, and avoid labeling whenever possible. Each child is an individual. While teachers may jump to conclusions about diagnosing a child with Asperger’s, each child is entitled to a full assessment with a good psychologist before receiving any label. A child may be just gifted, or gifted with Asperger’s, or may need a different diagnosis entirely.
Finally, Coble emphasizes that each child is unique and deserves treatment and therapies that provide for him intellectually as well as socially, outfitting him for life in a challenging world.
Source: Aspen Education Group
Link: Find a Therapist
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