MADELEINE BRAND, host:
So, what are parents like Amy supposed to do? What are their options? And how can they find information? For some answers, I spoke with Marguerite Colston of the Autism Society of America.
Ms. MARGUERITE COLSTON (Vice President, Marketing & Strategic Initiatives, Autism Society of America): I myself have a son with autism, and like Amy, when I got the diagnosis, I was essentially told, goodbye and good luck. What we need professionals to say when they hear the diagnosis or deliver it is, call a support group, take care of yourself and your child, and here's some information.
BRAND: So, it really does vary, doesn't it, state by state?
Ms. COLSTON: The problem with autism is not that we don't have the information. It's that it's inconsistent and we're not having people who need it get access to it.
BRAND: Amy is a single mother. She's in Michigan. What's out there for her?
Ms. COLSTON: Well, I can't speak directly to Michigan, but nationally in America, there is a very important law that protects families and provides for resources and services, and that's the IDEA law. Not many people know about this. This is a really important law for families, because from ages zero to 22, the federal government requires that children receive rights to a free and appropriate education. And what that does is it gives families and the children resources and support.
BRAND: What happens if a school tells a parent, you know, we just don't have the resources available to help your child in this classroom, and your child needs to really go find alternative education?
Ms. COLSTON: The parent should not accept that. By law, every child is entitled to an individualized education plan, which means their needs need to be met by this law, IDEA. So, if a state tells them that, they need to say to the state, you need to help me find it. And if my child needs it, it's my right, it's his right or her right.
BRAND: Are there people in Michigan and elsewhere, in the various states, that parents can call up and say, can you help me through this maze of state laws and federal laws and even local school rules, and just help me get the best services, and help me get what I'm entitled to?
Ms. COLSTON: There is. We have a database that parents can go to and search by zip code for things like, where can I get therapists? What is my school contact info? Aside from us, though, every state does have a school-system representative and a developmental-disabilities administration, and their entire job is to help families with autism find whatever supports are there.
BRAND: And we will link to your website at our website, npr.org. What about cost? Amy is a single mom. She doesn't have a lot of money. Is there money available?
Ms. COLSTON: That's the biggest question. I mean, autism often bankrupts families. In many states, 26 and growing, there are Medicaid waivers which entitle children with special needs such as autism to get the services they need. Right now in America, that's your best way to access money for services you need, because private insurance and state insurance is still getting their arms around autism. So, I can tell you. I'm a single mom, and much of my son's speech therapy is still not covered.
BRAND: You know, I read a story once - I think it was in the New Yorker or somewhere - where a family actually picked up and moved to go to a state that had better benefits. They moved to New Jersey. Are there states where it's just better to have a child with autism?
Ms. COLSTON: The first thing we do at ASA is we always tell the parent, do call your state agencies. Often you will find they have more resource than you think. Having said that, though, many people do move states. States such as New Jersey and California, for example, sort of lead the way in appropriate education programs, services, and support. However, what we need to do is make autism a national priority, so that families like Amy don't have to move, so they don't have to suffer. And we'll do that, if we keep pushing.
BRAND: Marguerite Colston is with the Autism Society of America. Thank you very much.
Ms. COLSTON: Thank you.
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BRAND: And you can hear the first part of our Autism Chronicles by going to our website. That's npr.org/daytoday.