MICHEL MARTIN, HOST:
I'm Michel Martin and this is TELL ME MORE from NPR News. Today, we want to address some lingering important questions in the wake of that terrible shooting at that Newtown, Connecticut school last week. Later, we'll talk with an editor who specializes in media for children about some ways to talk about this with members of your own family or with other children in your life.
But first, we want to talk about something you may have heard speculation about. By now you might have heard that the shooter, Adam Lanza, has been described as quiet or different. Many reports quoting unnamed sources or hearsay from the family's divorce mediator have suggested that Lanza had autism or Asperger's syndrome.
Now it's important to note that officials have not confirmed those diagnoses. Still, we wanted to dig deeper into the conversation that people are now having, which is what if Lanza was on the autism spectrum? What, if anything, does that mean? To talk more about this we're joined now by a group of people who are very well acquainted with autism and Asperger's.
Julie Vanderpool is the mom of a 17 year old son with autism. She wrote a column about her reaction to the Newtown shooting for the website Autism After 16. Camille Proctor is the mom of a six-year-old with autism. She founded the Color of Autism Foundation which helps African-American families or families of color with autistic children. And Dr. Fred Volkmar is also with us. He is a child psychiatrist who specializes in autism and chair of the Yale University Child Study Center.
I welcome you all. Thank you all so much for joining us.
JULIE VANDERPOOL: Thanks for having us.
DR. FRED VOLKMAR: Thank you.
CAMILLE PROCTOR: Thank you.
MARTIN: So, Doctor, I'm going to star with you and I'm just going to ask you to give us as short an explanation as possible. What is autism? And what's Asperger's syndrome?
VOLKMAR: Well, the very short explanation is that autism is a very serious social disability and that impacts many areas of life and learning. And the short version of Asperger's is it's very closely related to autism but differs in some of its clinical manifestations. Often, people are more cognitively able but often they're highly verbal in the face of a very serious social difficulty.
And they often have an unusual interest. They know something about one topic - the weather or dinosaurs or something else - that they live for and that they and their families discover that their lives are revolving around knowledge in that area. And they differ in some ways from the children with autism because they don't have some of the same language delays and some of the behavioral problems. But they're very closely related.
MARTIN: Is there some research that suggests some connection between autism, Asperger's and violence?
VOLKMAR: Well, it's interesting. To the extent, and keep in mind most of the reports about violence and other issues have been based on case reports - and there are a handful of these around the world. The trouble with case reports is that case reports get reported because they're newsworthy. I know hundreds, if not thousands, of people with high functioning autism, I mean with Asperger's, and the vast, vast, vast majority of them actually want friends.
They want to make connections. Often, they are troubled because they have trouble doing it. But they are not people who are violent and they are certainly not people who are out there. In fact, they're very reasonable members of society. And the happy news over the last couple of decades is with earlier diagnosis and better treatment, outcome is really improving.
So we're now having kids going to college and becoming members of the workforce. And this is because, among other things, we have also made more of an effort to include children with all kinds of disabilities in schools and community life.
MARTIN: Julie Vanderpool, you wrote a blog post about the fact that when the news about this terrible shooting emerged your first reaction was, of course, as just a parent, just a terrible shooting emerged, your first reaction was, of course, just as a parent, just as a terrible thing to happen involving anybody, but particularly children, but you said your second reaction was the one that you find that commonly minority group members have when something bad happens. Is you find yourself thinking I hope nobody who's a member of my group is involved in this. Why do you think you had that reaction?
VANDERPOOL: Well, Michel, we in the autism community struggled so much to get notice out in the general public about what autism is and early interventions. And we've made great leaps in that area. But when you have a shooter identified with an autism spectrum disorder - which is one of the first identifying factors that came out about this person - and whether it be fact or not at this point, that word is out there and it's associated with this horrible tragedy.
You know, we're just now getting to see a glimmer of light shown on the issues that are facing the aging population of autism and for this it's a quantum leap backwards to be thinking that someone is going to see someone with autism and think shooter.
MARTIN: Camille Proctor, what about you?
PROCTOR: Well, it's strange because as an African-American parent we've always kind of instilled in our children to yield for the police and things of that nature. And it's always been in the back of my mind that what if something like this could happen to my son. I know that there are studies that say that there are children that aren't violent but then I also was bombarded with emails from parents who were worried because they have children on the autism scale that are maturing and having issues with anger.
One of the reasons I started my organization is because in underserved communities there's so many undiagnosed, misdiagnosed children on the autism scale. And those children typically end up in the criminal justice system. And I think parents really need to do their due diligence in regards to getting the services that their children need.
They need to learn how to advocate. You can't just says I have a diagnosis of autism and then let's say the child - and I'm not a doctor and that's why we have them here - is the child might be bipolar or schizophrenic. That's not autism. And I think that they're throwing out autism, Asperger's, and now people are holding up these yield signs like these children are lepers or shooters.
Right now I'd just really like for them instead of saying Adam had Asperger's and autism, they need to go into it further. What else? Did he have any other issues?
MARTIN: If you're just joining us we are addressing the speculation that the Newtown, Connecticut shooter may have been autistic. And it's important to note here that no diagnosis has been confirmed at this time. We're dealing with speculation. But we're having this conversation because we know that other people are having it and we felt it was important to let people who really have a connection to and understanding about autism be heard on this.
I'm joined by Camille Proctor and Julie Vanderpool. They are both mothers of autistic children. Dr. Fred Volkmar is with us also. He is a child psychiatrist at Yale University and this is one of his specialties. Dr. Volkmar, I think one question people might have is autism a mental illness in the same way that schizophrenia or bipolar disorder is a mental illness?
VOLKMAR: Well, all these things can be true. And I think the basic thing to think about is it's very fundamentally a developmental disorder and that having this very severe social problem - most of us come into the world, we're carrying around a social frame. We look at the world constantly from day one of life through the social frame. Lacking that, odd things happen.
And, as you've heard, although on balance the outcome is getting better, we still have some children who don't get better even with good programs for reasons we don't understand. We've had a lot of work on very young children and early intervention. We have much less work on children as they get older and much, much less on adolescents and adults.
And like everybody else, people with autism can have anger and frustration, especially the more cognitively impaired children can have behavioral issues. And when you think about how they have horrible problems with communication, with dealing with change, you can understand why that would be.
Again, if you have a social disability, not only do you not know other people so well, you don't know your own emotions, your own self so well. All that being said, the vast majority of people, especially the more able people, are very law abiding and, if anything, paradoxically, they tend to be rule-governed.
MARTIN: Camille, I was wondering for you as an African-American parent, you know, getting a diagnosis is a double-edged sword. I mean, it's a double-edged sword for a lot of people, right?
PROCTOR: It wasn't for me.
MARTIN: Go ahead, tell.
PROCTOR: I knew what it was and it didn't bother me. However, the reason I started my organization is because you literally have parents who would rather have a child be labeled as bad than autistic. It's like putting lipstick on a pig because you still kind of have those same issues that you have to deal with, the social awkwardness and just there's certain things.
Because my son was diagnosed with that but he's autistic. I mean, he has sensory issues. The only thing that makes him different is that he's very engaging and he likes people and he has a lot of friends. He really likes girls. I mean, you know, he's like a social butterfly.
VOLKMAR: That's interesting. That does happen for many kids as time goes on. And, again, back to people with Asperger's. Usually what the trouble it they're too friendly. They come up and make inappropriate statements to people or they want to very quickly have a girlfriend. They'll talk to her about sex, not understanding, you know, that's a whole lifelong discussion.
PROCTOR: No, he's only six. No, his thing is just being - he wants to be a part of whatever's going on.
VOLKMAR: Yeah.
MARTIN: I see.
VOLKMAR: Yeah.
MARTIN: So the whole quiet, difficult, withdrawn is no him. But I see what you're saying. You're saying that, you know there's some cultural stuff going on too whereas some people brace a diagnosis because it's a pathway to understanding. Other people think, no, I don't want that. And Julie Vanderpool can I ask you, you know, your son is of an age where it's harder to insulate him from the news that's out there.
VANDERPOOL: Mm-hmm.
MARTIN: Is he worried about this?
VANDERPOOL: He's probably taken it a little bit to a different degree than my nine-year-old, who is very perceptive and, you know, is very saddened by the situation. My son, one of the presentations of autism is a little bit of a different affect and not really showing emotion. But he did see me watching the news and saw a parent discussing, you know, being told that her daughter was dead and it really, really upset him.
As far as his fear for his own safety, I don't think that that is the case but I don't know that he would have the capacity to explain that if he did feel that.
MARTIN: Before we let you go, is there some message or one message you'd like to leave people with as the parent of a son that you love very much who does have this condition? Which is something that you spend a lot of time thinking about. Is there a message you want to leave us with at a time like this?
VANDERPOOL: Well, just that the label of autism had absolutely nothing to do with this horrible tragedy in Newtown.
MARTIN: Camille?
PROCTOR: I agree with her. Autism didn't cause this tragedy. And I'd just like for people to really think about the other factors as the evidence comes forth that could've caused this. I mean, you know, the access to the guns. And I hate to be on a soapbox but nobody needs an assault rifle for anything.
MARTIN: Dr. Volkmar, final thought from you?
VOLKMAR: Well, sadly, just to echo that. Let's think about all the other issues. Let's think about mental health care. Let's think about new models of care. Let's think about people who are underserved. There's very little work going on with adolescents and adults with autism at the federal level in terms of grant-supported funding.
Those are people, who with some help, can be made to be very functional members of society, and they want to be. They want to be included in. In fact, most kids with Asperger's desperately friends. they're not on their own isolated. They are eager to have friends and they just have trouble. They need help doing so.
MARTIN: Dr. Fred Volkmar is a child psychiatrist at Yale University. He specializes in autism. He was with us from there. Our guests are Julie Vanderpool and Camille Proctor. They're both raising sons who are autistic. Julie Vanderpool joined us from Washington, D.C. Camille Proctor joined us from Atlanta. Thank you all so much for joining us.
VOLKMAR: Thank you.
VANDERPOOL: Thanks for having us.
PROCTOR: Thank you.
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MARTIN: Coming up, you might still be struggling to come to terms with what happened in Connecticut and you're a grown-up. So what do you say to your kids? We'll talk with the editor of a magazine designed for kids for some ideas on just how to talk about that kind of upsetting information. That's coming up on TELL ME MORE from NPR News. I'm Michel Martin.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.