February 3rd, 2011
01:35 PM ET
If the years immediately following an autism diagnosis aren't tough enough for a child, the next phase of their life can be even more stressful. Which is why Autism Speaks, one of the biggest autism advocacy groups is unveiling a new tool kit designed to help these children and their families cope with this stage of life.
Life as a teenager is filled with many changes. Hormones are raging, the body's changing, teens move to middle and high schools, and there are a whole new set of social expectations and planning for life after high school. This is difficult terrain to maneuver – and it can be even more challenging if you are teen with autism – the developmental disorder that makes social interaction and communication more difficult.
By the time children with autism reach adolescence, their parents have spent a lot of energy trying to figure out the puzzle that is autism. It usually involves work to get their children the proper therapy and education needed to help them cope with this neurodevelopmental disorder. Now they are living with a teen who can be moody or more difficult – not because they have autism, but because they are going through puberty. Plus, parents have to start planning for their child's future, facing the reality that the years when education systems are required to help their kids improve are dwindling. Soon their child will have graduated from school and the resources available to help their child cope with the many facets of autism will be few.
Peter Bell is the father of an 18-year-old son with autism and the Executive Vice President for Programs and Services with Autism Speaks. He along with so many other families are in the middle of this phase of transitioning his child from childhood to adulthood. "We feel like pioneers," Bell says. He says there really wasn't anything available to guide them through this phase of his child's life. So the organization gathered experts and professionals and added parents and asked for their help in developing a tool kit, Bell tells CNN.
This Transition Tool Kit is another online guidebook Autism Speaks has put together. Its first "100 days" tool kit, introduced a few years ago, was specifically created for parents of newly diagnosed children to make the best possible use of the 100 days following their child's diagnosis of autism. A tool kit for schools and the community followed.
"This is the next natural progression" says Bell. "This Transition Tool Kit is for the 14 to 21 age group." While there are different types of autism and within those categories each child's disorder may manifest itself in a different way, Bell believes that "the vast majority of the [autism] spectrum will benefit from this took kit. There are sections that I think will be relevant for almost everyone."
This handbook emphasizes the importance of involving the teen in the decision-making process that affects his or future. Bells says the child must be part of the decision-making process regardless of their ability level. While some children with autism may not be able to communicate, that doesn't mean they can't be part of the meetings, says Bell. He says this new tool kit provides tips on how each child with autism can participate in the decisions that will affect his or her future.
There are other tips to help families conquer the challenges of moving from childhood, through to teen years and to adulthood. Bell says, for example, that he doesn't believe his son will be going to college, so he may skip that chapter. However he says he will look at the chapter about housing because he knows at some point his son will have to live away from home – even if that point is 15 or 20 years from now. He says parents should start preparing for this as early as possible.
The kit also provides a timeline and other organizational tools that can help parents navigate their child's adolescent years.
Parents and children can download a PDF version of the tool kit from the website. But Bell says Autism Speaks also offers the option of ordering hard copies of all the tips and providing information customized to specific cities.
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