Caring about autism

My kid has autism and a seizure disorder (which 50 percent of kids with autism do). Why should you care? First, because you pay for her early intervention services. And there is a lot that needs to be cleaned up in the state-paid system of early intervention.

For starters, there is no adequate system of quality assurance. That means there is no way to demonstrate that your tax dollars are being used effectively to help children with special needs measurably improve the quality of their lives. And without good early intervention, we will have to continue with further intervention.

If it is true, as George Bush says, that we should “leave no child behind,” or as Hillary Clinton says, “it takes a village,” then we should all be concerned about the quality of education not just for “typical” kids, but for special needs kids too.

Did you know that appropriate early intervention can significantly decrease the amount of services that must be provided later, at taxpayer expense? Did you know that it is much cheaper for you if I care for my daughter in my own home, given adequate supports and services now, than for her to have to live in a group home later as a teenager or an adult? Did you know that it is much cheaper for you to have me be her pro-bono case manager, taxi service, medical manager, advocate, and last but not least, her mom, than for you to have to pay for her to be in a therapeutic foster home, that could cost taxpayers up to $50,000 to $75,000 a year?

To have a child with a major disability living in your house it takes a sacrifice of time, energy, money and effort above and beyond the personal commitment it takes to raise a “typical” child. It means that you are most likely not going to be able to work outside the home and still do all the things that I mentioned above. If you do, you are going to forfeit a fair amount for your child, since nobody else is doing it for you.

Why should you care that my child has autism and a seizure disorder? Because most likely your kid is going to come into contact with my kid or a kid like my kid in school, on the playground, in your neighborhood. And most likely your kid is going to have some questions about my kid’s behavior. And most likely you are going to have to understand autism enough to clarify it to your kid, if you care to do so compassionately, without using labels like “weird,” or “behavior problem,” if you care enough to understand this hidden disability called autism. Did you know that autism is on the rise, and has increased almost 300 percent in the last decade?

There is a lot you can do. Ask questions before you label and judge parents and children with disabilities. Provide support. Give a parent with a special needs kid in your neighborhood some kind words or some time away. Ask how your tax dollars are being used effectively, and look for accountability. Include special needs kids in programs in your community that accommodate all kids, not just typical kids. Be kind. It could have been or could still be your kid someday. Or your grandkid. Realize the tremendous strain the disability takes on the family, in many ways challenging the whole family. Learn about it.

Is anybody listening?

Sara Alexander of Hampden can be reached at SPJALEX@AOL.com and welcomes comments from readers (use subject heading).