Transcript of Redefinition of Autism on FOX & Friends

ALISYN CAMEROTA: There is a major debate brewing in the medical field, and that is: How should autism be defined? The definition, which now includes a wide range of disorders, may be tightened to limit how many kids fall under the diagnosis of autism. But parents are very concerned about this. They say the stricter criteria may prevent their children from getting the services that they need.

Joining me now to talk about this is Jodi Bouer. She is an insurance advocate and a litigator for families with autistic children.

Jodi, thanks so much for being here to help us make sense of all of this.

Why is the American Psychiatric Association considering changing the definition of autism?

JODI BOUER: I think that they are trying to be more specific about the conditions that might fall within the scope of the definition, but they haven’t realized that in narrowing the definition, that they are going to be hurting a lot of children.

ALISYN CAMEROTA: And how are they hurting children by this?

JODI BOUER: Well, in the DSM-IV, the current definition, there is a pervasive development disorder spectrum, and kids with autism, Asperger’s, PDD-NOS, all fall within the scope of the spectrum.

They have gotten rid of pervasive development disorder in the proposed definition and they have something called autism spectrum disorder, which requires a trio of three symptoms, social and communication deficits and repetitive behavior. A lot of kids who have PDD-NOS and Asperger’s, possibly, are no longer going to fit within the scope of that definition.

ALISYN CAMEROTA: Because they don’t have repetitive behaviors?

JODI BOUER: Because they might not have repetitive behaviors.

ALISYN CAMEROTA: So, basically, what it sounds like you are saying is that when they change the definition, the symptoms for kids who were previously on the spectrum won’t change, they will still have their same symptoms of anti-social behavior, or whatever it is; however, they won’t be able to get coverage?

JODI BOUER: They won’t be able to get coverage, because the state mandates basically lay out the diagnoses that require coverage, and within the scope of those mandates, typically, it’s autism, Asperger’s, PDD-NOS.

PDD-NOS and Asperger’s is no longer going to exist. A large — or a portion of the children who have those symptoms, don’t have social communication disorders and repetitive behaviors. They are no longer going to be considered autistic, so the statutes are not going to protect them anymore.

ALISYN CAMEROTA: We just threw up a map of all the states. You can see how widespread this is throughout the country. I mean, there are a lot of states that are considering doing this. And by the way, the CDC — there was a 2007 study that estimated the lifetime cost of care for a child on the spectrum to be $3.2 million. So now families will have to somehow come up with that money if they want treatment for their children.

JODI BOUER: That’s right. Diagnosis drives treatment, you know, and treatment — you know, if they don’t have the diagnosis, they are not going to have insurance protection. And the parents are going to be the ones to pick up the costs, the school districts are going to be the ones to pick up the costs, if they can even get the school district’s support in the first place. Social services are going to pick up the costs. The children are going to be fighting for coverage without a diagnosis.

ALISYN CAMEROTA: Is it possible the American Psychiatric Association will reconsider and that they won’t change the definition?

JODI BOUER: That’s a good question. Right now, the definition is in flux. They are considering whether or not to change it. It’s not set in stone. And so, you know, we need to comment on it. They are taking comments from people, from the public, from the psychiatric community. We need to comment on it. We need to let them know that by narrowing the definition, they are going to take away a lot of services from kids.

ALISYN CAMEROTA: Because right now, kids who are on that lower scale of the spectrum who maybe might be more high-functioning, are they in regular classrooms in schools with other kids and functioning?

JODI BOUER: You know, if they get intensive behavioral therapy and speech and physical therapy when they are young, and they get that through the help of the state insurance mandates, they very well could be in much better shape later on and won’t need help from the system as — you know, as they become adults. If those kids don’t get those therapies because they don’t have the protection of state mandates, that’s what’s going to happen, they are going to be in trouble. They are going to need help as adults. It’s going to be a much higher cost to society.

ALISYN CAMEROTA: So for all the parents who are watching us this morning, what can they do to make sure that this doesn’t go forward?

JODI BOUER: They have to reach out to their legislators, they have to, you know, reach out to the DSM — the people that are changing the DSM. They have to —

ALISYN CAMEROTA: Can they write directly to the American Psychiatric Association?

JODI BOUER: I think they can write directly to the American Psychiatric Association. They can start to protest the new definition. We need to have — we need to cry out and comment on this change. It’s a narrowing of the definition. It’s going to hurt a lot of kids.

ALISYN CAMEROTA: Well, Jodi Bouer, thanks so much for coming in and opening our eyes to all of this. We really appreciate it.

JODI BOUER: Thank you so much.

ALISYN CAMEROTA: It was great to see you.