0.cached.png
By Jon Meacham
0
Share
Newsweek is a Trust Project member
See more of our trusted coverage when you search.Prefer Newsweek on Googleto see more of our trusted coverage when you search.
For a time, Susan and Jeff Hudkins thought they knew what they were up against. First in 1997 and again in 2000, their two little boys were diagnosed with very different forms of autism. The parents understood then that their children would spend their early years in ways the Hudkinses had never imagined--emotionally troubled, developmentally challenged, veering from treatment to treatment. The Hudkinses' goal was to give the kids as safe and secure a childhood as possible in their Chicago suburb. Then, about two years ago, the world turned over yet again as the Hudkinses began contemplating the future. "When your kid turns 10 or 11, something changes in your focus," Susan told our Julie Scelfo . "I'm all of a sudden focused on: what is his life going to be like in five or seven years when he is an adult, or when I'm not here? When he is an adult with autism, what is life going to be like for him? That comes pretty quickly as a parent."
Tragically, answers to the Hudkinses' questions are not coming as quickly as the anxieties and the fears. In our cover package this week, edited by David Noonan, Julie and Barbara Kantrowitz explore a new frontier in the story of autism in America--what happens when kids with autism grow up. Simply put, the numbers are stunning: autism is estimated to affect from one in 500 to one in 166 children. As Mary Carmichael reports, there is much debate about causes and cures: Do environmental toxins play a role? How significant are genetics?
There is no debate, however, about the fact that thousands of children with autism are getting older. "Who's going to care for these kids when they grow up?" asks Bob Wright, the NBC Universal CEO and chairman who cofounded, with his wife, Suzanne, the advocacy group Autism Speaks. "What is the role of the states, of the federal government? These are real issues. Looked at one way, it's a burden on society. Looked at another way, it's an obligation." One piece of counsel Wright offers: parents should secure legal guardianship so that they're still able to take care of adult offspring in medical and legal situations.
Read More on News
We are publishing these stories at a fraught moment in the politics of autism. The Combating Autism Act, which unanimously passed the Senate, has been held up in the House by Rep. Joe Barton, a Texas Republican who chairs--until January--the House Energy and Commerce Committee. The battle over the legislation reached a national audience when radio host Don Imus, who is a friend of mine and of others at NEWSWEEK, took up the cause, regularly flaying Barton forobstructionism.
With the Democrats coming to power in a matter of weeks, Barton is now moving to pass a House bill in the lame-duck session of Congress. One important issue: the Senate version mandated specific sums of money to be spent looking into environmental factors, but the House bill does not assign dollar amounts to any single area of inquiry. Some in the activist world worry that less specificity may mean more years of frustration for families. The political struggle will go on; meanwhile, the advocacy community's next legislative focus is expected to be on the needs of adults with autism.
For Susan and Jeff Hudkins, that day cannot come soon enough. They are now trying to prepare their older son for what lies ahead. "Life is not static," says Susan. "Life is unpredictable, constantly changing. My hope for him is that he'll not only be able to handle changes but see how wonderful life can be when changes happen and uncertainty occurs." A difficult task for any parent--and an especially hard one for parents of children with autism. Major diseases require epic measures, and only when enough people--from lawmakers to taxpayers--recognize the dimensions of the autism crisis will families like the Hudkinses find the help they need.
View 0 Comments
Submit Correction
View Editorial & AI Guidelines