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The Road Toward Independence

When to prepare your child with autism for adulthood

The Road Toward Independence
November 2013

Help wanted: Loving adult to prepare child for meaningful, independent life. Seems like a logical job description for a career as a mom or dad. But what exactly does independent mean? And what does it mean for kids with autism?

For some, independence will look very much like the independent life of a neurotypical adult. Others may require some assistance, but can live independently of their family. Some will never achieve much independence. Just as no two kids with autism are alike, so it goes for adults with the disorder.

MaryLou Raby, whose adopted son Jacob has autism, says she perceives independence in Jacob much differently than she does her other children. "If he can go in and order food from McDonalds and pay for it and count the change back, that's great. I'm observing, but not treating him as a child," she explained.

Jacob, 21, does actually live independently. He shares a three-bedroom home with two roommates and 24-hour care from Damar Services. Is Jacob fully independent? Maybe not in the traditional sense, but he lives independent of his family. He visits them and vice versa. If he wants to go anywhere he just asks the staff to take him or make arrangements for him.

Raby is pleased with the life Jacob is leading. She says she never imagined his life would be as good as it has become. She gives much credit to Damar Services, who took Jacob in when he was 10 years old, provided his education and are now helping him with his life as an adult with autism. Of course, her own efforts to help create an independent life for Jacob are without measure, as are the efforts of the increasing number of parents raising kids with autism.

When should parents like Raby begin to think about the inevitability of their autistic child one day becoming an adult? Dr. Carl Sundberg, executive director of BACA, says it depends on the severity of the autism, the quality of the child's treatment and how well the child responds to that treatment.

If a child is very young, between two to four years old, in intensive treatment and catching up to his or her peers, Sundberg says parents can focus on getting that child mainstreamed, or close to it, so a regular school can take over. A child who is approaching age five or six and is still significantly behind may need some sort of support throughout his or her life. He suggests at this point parents start looking five years down the road and beyond. He stresses the importance of setting realistic expectations for the child so the right skills are taught. "You need a real understanding of the child's potential and teach things that are going to be useful," he said.

Kelly Goudreau, program coordinator at Applied Behavior Center for Autism, agrees that it's important to begin thinking about preparing a child with autism for a more independent life as soon as possible. "Our goal is to define independence for each child and help every child reach his full potential," she said. The road to independence often includes learning daily living skills like toileting and showering, community skills like grocery shopping and going out to eat, and social and communication skills such as asking for help, says Goudreau. For some, skills like reporting to a supervisor, following a schedule and getting along with coworkers will also need to be learned.

Sundberg looks at the process as a continuum of independence. "It's not an all or nothing thing. Nothing is. The goal is to maximize the potential of every student. Once you understand what their potential is, you focus on happiness. If a child can achieve close to his potential and is happy, that is what's important," he said.

Parents with a child on the autism spectrum should work with an autism professional much like they consult a pediatrician, to maximize their child's potential as they travel toward the more independent road of adulthood.

Tags: In This Issue, Special Needs

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