NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. Nearly one percent of children in the United States have been diagnosed with some form of autism, a number 20 times higher than it was just a generation ago. A series of reports in the Los Angeles Times explores whether this boom is an epidemic of disease or an epidemic of discovery.
The series finds dramatic differences based on income, location and race, and finds that some parents seek a diagnosis to get treatment for a child as early as possible while others struggle with the stigma associated with autism.
If you went through an autism diagnosis with your child, tell us about your experience, 800-989-8255. Email email@example.com. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION. Later in the program, ukulele virtuoso Jake Shimabukuro joins us to play a couple of songs and take your calls.
But first, Alan Zarembo joins us from member station KPCC in Pasadena. He's a staff writer with the project and investigative team at The Los Angeles Times. His series "Discovering Autism, ran last week. Thanks very much for coming in today.
ALAN ZAREMBO: Thanks for having me, Neal.
CONAN: And I wanted to ask you about your finding that those who receive the most services are those who protest the loudest.
ZAREMBO: Well, that's correct. We found, when we analyzed data from the developmental services system here in California, major, major differences depending on race in terms of the spending on services for these kids. And race really was a proxy for socioeconomics. Parents with the resources to fight were able to do so and had much better success than those who were less equipped.
CONAN: There is, for example you should tell us about Stacey Funk(ph), one of those you describe as a warrior mom.
ZAREMBO: I met many, many parents like this, incredibly dedicated parents who have essentially made it their full-time jobs to fight for their children. Often they hire lawyers, professional advocates, and they push for all the help that they can get. It's quite a contrast to many other parents, who simply accept what they're offered, and given the strain on the state budget and on the schools, often what they're offered is far, far less than what these more resourceful parents wind up getting.
CONAN: So when you look at the differences between the number of cases reported in a place like, oh, say, Orange County in the Los Angeles area and further afield in more remote parts of the state, there are dramatic differences.
ZAREMBO: Right, well, we have to - you know, there's two kinds of disparities that we found. So what you're referring to here is disparities in diagnosis. We analyzed school district data for every single school district in the state, looking at the proportion of elementary school students who had an autism eligibility for special education, and we found dramatic differences depending on where you go.
So as you point out, there's a very big split between rural California and urban California. The rate of autism in some school districts in Orange County was as high as three percent or even a little bit more, and we found 130 school districts out of about 1,000 statewide that listed no autistic students.
Many of those were clustered in the Central Valley of California.
CONAN: And is there...
ZAREMBO: And - I'm sorry.
CONAN: And what explains those differences?
ZAREMBO: Well, you know, this was perplexing to me when I first noticed them. I went to experts, and I said is there something in the water in Southern California that is causing this? And really nobody thought so. What we're really seeing here are the signatures of the social forces that determine who gets diagnosed. Awareness is greater in certain places. The label has taken on a broader meaning in certain places; it's used more freely.
Other places seem in a sense trapped in a very old interpretation of autism, which was invariably severe and lifelong. On the whole, the label, though, has expanded enormously, as have efforts to identify children with the disorder. And Southern California, in a sense, is just further ahead than the rest of the state.
I should add that we also see these differences across the country. When you look at the rates statewide, you see enormous variation. The rate in Minnesota, for example, is 10 times that in Iowa.
CONAN: You conclude, in fact, that autism, the condition, is not communicable. The diagnosis, however, is.
ZAREMBO: Exactly. One very interesting study was done by a sociologist from Columbia University who did a spacial analysis of the distribution of autism cases in California, and he found that if you lived very close to somebody else with the disorder, your chances of having your child diagnosed were 16 percent higher than if you lived further away.
And he did some very interesting tests to look at this hypothesis. He looked at kids who were on opposite sides of a school district boundary and found that in that case the trend didn't hold up. And so what he was able to conclude is that this was really just word of mouth, you know, parents meeting in parks, at school district meetings, and spreading awareness, telling each other about which doctors to see, where to get diagnosed, how to tap into the services that were available for their children.
CONAN: Well, let's get some callers in on the conversation. We want to hear your experiences if you've had a child who's been diagnosed with autism, 800-989-8255. Email firstname.lastname@example.org. We'll start with Pamela Spring - excuse me, Pamela in Spring Lake, Michigan.
PAMELA: Hi, thanks for taking my call.
PAMELA: I'm calling, I have a now-seven-year-old daughter, and she was diagnosed just about about on her second birthday. Her - she started to kind of act quirky around 15 months, and then by 18 months she had stopped feeding. She was extremely self-injurious. She would have tantrums six hours long, and we couldn't get anyone to listen to us. Even family, they just kept telling us that it was, you know, terrible twos came early and things along those lines.
And finally we went to Ann Arbor, and I think I - like you had said earlier - I just yelled loud enough, and finally we were able to get some attention. She got her diagnosis. We don't have a lot of financial means, but I am a very aggressive person, and I think I Googled a lot. So I was able to get her into a lot of different services.
We had feeding therapy because she was losing weight and some occupational therapy, sensory integration, and then she got into the school district, which we are fortunate is a very good school district.
CONAN: And is she doing better?
PAMELA: She is doing great. She's in the first grade. She has a para-pro, but she gets pulled out, you know, for little things here and there, but she is in a full - she has a full day of first grade with her para-pro. So she's doing amazing.
CONAN: A para-pro?
ZAREMBO: Yes, she has her own aide, basically, that stays with her all day to kind of help guide her. She knows her very well. So if she starts to have a hard day, a hard time, she knows kind of when to pull her out and to reset her, if possible.
CONAN: But worth the yelling?
PAMELA: I'm sorry, what was that?
CONAN: The yelling turned out to be worth it?
PAMELA: Oh yes. Yup, that's something too, the beginning, how it was stated, you know, are we just being sometimes a little hypersensitive? And if a pendulum swings that way for a little while so that people can kind of catch up with, you know, to recognize those signs, then I say you have any question at all, go seek out a professional. Do everything you can, because early intervention made all the difference for her. She is a – she is a new creature.
CONAN: Pamela, we wish you and your daughter the best. Thanks very much for the call.
PAMELA: Thank you so much.
CONAN: Joining us now from our bureau in New York is Catherine Lord, a clinical psychologist, director of the Institute for Brain Development at New York Presbyterian Hospital. Alan Zarembo spoke with her as part of his series. Nice to have you with us today.
CATHERINE LORD: Thank you.
CONAN: And in one of the pieces he reported, you say many clinicians believe it's more of a tragedy when somebody gets missed than when somebody on the border gets misdiagnosed.
LORD: That's correct. I mean, I think that because the interventions are not dangerous, the interventions really build on normal development but try to work with the child's strengths and weaknesses, I think the feeling is if you have any doubt whether this child might have ASD, it's important to go ahead and work with the family and work with the child because we think that some of the things that we see in adults with ASD may be a consequence of the difficulties that they had growing up, which they didn't necessarily have to have, if we can get good intervention and appropriate services.
CONAN: And as Pamela's case suggests, the most effective moment for treatment is early intervention.
LORD: That's true, although I think it's very important to realize that later intervention helps too. I mean, I hear the mother in the introduction, and I think that it's - we're not implying that, you know, there's a window, and never again can your child learn. It's just that we think that things cascade, and so if you can get in there early and begin to get good skills, then, for example, a child can go to regular first grade, and that's a very different experience than they might have if they couldn't make it in a regular class.
CONAN: We should point out, though, this is not something that can be detected with a blood test or with a hammer poke on the knee. It's a behavioral diagnosis, right?
LORD: That is absolutely right. I mean, we know this is - autism is caused by something biological, but the reality is we don't know what. And so we have to look at behavior, and that's part of the source of confusion.
CONAN: And do we know exactly which part of the treatment is most effective to - for improvement?
LORD: Well, we know elements of the treatment. So we know that keeping kids socially engaged, building on very basic skills like imitation and attending to people, we know that those are particularly important active ingredients. But beyond that, we don't know whether, you know, whether kids need 40 hours or 20 hours, or whether they should play some and rehearse other times.
I mean, we don't have - and it's probably quite different for different kids.
CONAN: But when you're dealing with social services systems and school systems, yeah, but they tend to be sort of cookie-cutter answers.
LORD: Well, I think that's right in some ways and not in others. I think it's right because you have to have a prescription, you have to have a sort of bottom limit of what is enough, and that's, I think, what - partly what Alan is alluding to, is that, you know, there are bottom limits that are specified, but many, many families don't really get that because it's so expensive.
And so the families that actually get what - even the minimal treatments that are appropriate, are the ones who push.
CONAN: We're talking with Catherine Lord, a clinical psychologist at New York Presbyterian Hospital. She's with us from our bureau in New York. Also with Alan Zarembo, the Los Angeles staff writer with the project and investigative team who wrote a series called "Discovering Autism" that ran last week in his newspaper.
What are your experiences after your child was diagnosed? 800-989-8255. Email email@example.com. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Once a child is diagnosed with autism, focus turns to treatment. When Justin received his diagnosis of mild to moderate autism at age two and a half, he started therapy, progressed quickly. His parents pressed his school district for more and more help.
After just a couple of years, reports Alan Zarembo in the Los Angeles Times, they proudly declared their son recovered. It's what every parent of an autistic child hopes for but rarely a straightforward, easy path.
If you've guided your child through an autism diagnosis, we want to hear your story, 800-989-8255. Email firstname.lastname@example.org. You can also join the conversation at our website. That's at npr.org. Click on TALK OF THE NATION.
Alan Zarembo, a staff writer with the project and investigative team at the Los Angeles Times, is with us from KPCC in Pasadena. His series "Discovering Autism" ran in the paper and online last week. You can find a link at our website. Also with us, Catherine Lord, a clinical psychologist who participated in Alan's series. And Alan, I have to ask you, that definition recovered, that's a controversial term.
ZAREMBO: Very, very controversial. You know, one of the fundamental dilemmas about autism is that early treatment, which is preferable, requires early diagnosis. The problem is that the earlier you're diagnosed, the less stable the diagnosis is. And so when you have kids who recover, sometimes it's very unclear sort of what's the result of the treatment versus what is the result of the natural course of developments.
You know, this treatment is given at a time when kids are undergoing enormous, enormous change.
CONAN: Catherine Lord, is it possible that a child who recovers, quote-unquote, in a couple or(ph) three years maybe didn't have autism?
LORD: You know, I would be surprised. I think that probably some of it is that 20 years ago a child who was doing things that now we would say are autistic at 18 months, you know, might not be noticed, or people would be mildly concerned but not know what to do.
And if that child got steadily better, from say two to four, then by the time they're four, they wouldn't get a diagnosis. On the other hand, I don't think there are a lot of kids who are 18 months old or two years old who are getting diagnoses of autism who don't have quite marked problems. The question is just: Are there - is there a small group of those kids who really are going to grow out of this?
And that really may be true, but it's not my experience that kids are called autistic when they're little who really don't have problems.
CONAN: So those numbers you cite, which are sobering, in your series, Alan Zarembo, and sobering for their implications in terms of their impact on the taxpayers of California and by extension the taxpayers of the United States, those numbers are only going up.
ZAREMBO: That's right. I mean, I might point out that, you know, in my - in the course of my many months of reporting, I did(ph) meet, you know, children who didn't have problems. But the point I would make is that there's a lot of children who have something wrong with them, and there is not really a clear answer for it. And autism has become such a broad label that it's not a bad one to have to get help for your child, to open the door to services.
One really interesting survey was done - it was a massive survey done by the federal government a few years ago. It found that 40 percent - it was a survey of parents. It found that 40 percent of kids who were given an autism diagnosis at one point no longer had it. And that's a massive change from the past, when autism, you know, was considered invariably a permanent and severe diagnosis.
It was really a diagnosis of last resort. So we've seen an incredible shift, a transformation of this label.
CONAN: Let's go next to Sara(ph), Sara with us from Kerrville, Texas.
SARA: Yes, good afternoon.
SARA: My son was, I like to think, one of the first children diagnosed with Asperger's. We knew when he was about 18 months to two years that there were some serious problems with his social skills and other things. And he was given every other conceivable diagnosis, pervasive developmental disorder and oppositional disorder.
And we had to literally wait until the day that the diagnostic manual added Asperger's as a diagnosis and on that day went into the doctor and said please change this. So when he was diagnosed, there were no websites, there were no books, and we had to go into the school district and practically teach the teachers what were appropriate ways to deal with my son, who's now 24 and living independently.
CONAN: Well, good for him, and I'm sure that was not an easy path.
SARA: It was a struggle. The biggest problem we found with schools is that as soon as a program was put in place that was helpful to him, and he was able to function better in school, the first reaction then was to pull those supports. You know, he doesn't need an aide anymore because he's doing so well. So we had to constantly fight with the schools to maintain the services they were giving him rather than to reduce them as he got more successful.
CONAN: Well, I'm glad he's doing so well, Sara. Thanks very much for the call.
SARA: Thank you.
CONAN: Sara mentioned the DSM, the Diagnostic and Statistical Manual of Medical Mental Disorders. Here's an email from Yvonne(ph) in Syracuse: I was hoping your guest could talk about rumors the new DSM, about to be published, is going to completely eliminate Asperger's as a form of autism. This seems shocking to me, since the realm of autism is so vast it could use more clarification instead of less. Why would they think this is OK? Catherine Lord, can you help us out?
LORD: It isn't that Asperger's is going to be eliminated. The idea is that there will be just one autism spectrum disorder, because the reality is that the distinctions between Asperger's syndrome, PDD-NOS and autism are so variable across different clinicians that it doesn't give you much information.
So what the proposal is for the new DSM-5 is that people who have an Asperger's diagnosis would be included within the range of autism spectrum disorder, and then the point there is that we're asking people to clarify the specifics that are associated or why someone might have gotten that Asperger's diagnosis.
And it might be because of high intelligence or very good verbal skills or milder social deficits or particular circumscribed interests. So we're trying to get people to be more specific about the dimensions within an individual and the strengths and weaknesses rather than put people into these subcategories that turn out to just not mean the same thing to different people.
CONAN: There is - in the series we learn that this is a condition that describes everybody from kids with severe communication efforts - can't speak, cannot change their clothes, cannot really do much of anything - to kids who are math whizzes. It is just everybody is different.
LORD: Absolutely, and I think we really want to stress that describing how one child or one adult is different from another is absolutely critical. So it's not that we're trying to downplay that at all, but we're saying that it's better to be specific about how they're different than to have a general label like PDD-NOS or even Asperger's, as if it were a scientific diagnosis, because it's just not reliable across different centers and clinics.
CONAN: Let's go next to Maria(ph), Maria calling from St. Louis.
MARIA: Yes, good afternoon, and thank you for taking my call.
MARIA: My daughter is 26 years old, and when she was first diagnosed, she was 24 months, and I was told by a well-respected neurologist in St. Louis to - there's nothing we can do about her. Go home, forget about her. It was like a death sentence back then, and it made me more and more determined to find out what exactly what was wrong with my daughter.
I decided to read anything and everything that came into my hands, and thanks to a wonderful organization that we have here in St. Louis called Judevine Center for Autism, I was able to attend classes and find out that my daughter did not have a death sentence. Sara(ph) still has autism. Sara still has her days. But I have seen growth in her communication abilities and her social skills, which appear to be somehow impaired, yet it's a pleasure to be around her now these days.
Back then, I was told there was nothing to do about her, and I'm pretty sure my case is not that unique because I was told I was the cause of my daughter's autism - a refrigerator mother, sort of.
CONAN: Well, thank goodness that sort of thing is a thing of the past. It couldn't have been easy, though, Maria.
MARIA: I'm glad I did not believe them. You know, the label that my daughter has does not define her, you know? She loves peanut butter, spaghetti, music, but she is a person outside of her label, and I am glad I did not dwell into oh my gosh, oh my gosh, oh my gosh. I made everything and every effort to this day to keep Sara part of the community and to keep Sara - I don't know how to say it, I mean, just to being her.
CONAN: Well, thank you very much, we appreciate it.
SARA: Thank you.
CONAN: Alan Zarembo, you go back to the work of one doctor in particular who may be principally responsible for the techniques that aid at least some autistic patients.
ZAREMBO: Right, his name is Ivar Lovaas. He passed away last year. He was at UCLA, a psychologist who developed what has become the most popular therapy. It's called applied behavior analysis. And essentially what he did was break down the skills of life, the things that we learn without really thinking about them - such as reading a facial expression or identifying colors or looking somebody in the eye - and taught these things through operant conditioning. He published a paper on this in 1987, which really changed forever the way people think about the prospects for children with autism. Many of the children in his study did quite well. There's still a lot to learn, though.
And, you know, the techniques have evolved quite a bit since his day, but really, what scientists are trying to get their heads around is how best to use this therapy - you know, who should get it for how many hours. And it's a real nightmare for the service providers and the schools that wind up paying for it. You know, autism is - encompasses, as you said, such a broad range of children, that there's often enormous dispute over what any individual child needs.
And to go back to what we were talking about before, often, what seems to be determining what a child gets is how hard the parents fight once they do have the autism diagnosis. So it's often this, sort of, a very haphazard sort of system that gets children help. And we were able to document that in our stories through data from the California Developmental Service System and in the California schools.
CONAN: There is - you also say there has been - other doctors have had difficulty repeating Dr. Lovaas' results, and in fact a study - perhaps the best study -done by a student of his, found some troubling results that challenged some of his theories.
ZAREMBO: Well, it appears that the people that do best with this therapy are those who start off with the fewest deficits. So they already have some language. They already have the ability to imitate their peers. And in this study that you're referring to, it was the children who had, in fact, a milder form of autism who had the best outcomes.
CONAN: Catherine Lord, is that changing perceptions?
LORD: I think that we're left almost with a, ethical dilemma, and that's partly, you know, who do you treat? And it's very complicated, you know, even in medicine. I mean, I think if someone was is in a little pain, you wouldn't say, well, it's better to give them treatment than someone who's in a lot of pain. But - and I think that's kind of where we are. I mean, we can treat the kids who have the biggest problems, and they make the slowest progress. But I think as a society, we have some commitment to helping them move toward being able to take care of themselves at a very basic level. And those are very, very important things, even though they don't look as good when you add up numbers.
On the other hand, there are kids who, if you do early intervention, really may be independent and do very well as adults. And we want to push them to be as independent as possible. And so I think that it often isn't - it isn't - that isn't the scientific question. It's more a question of just what does that - what is the society's commitment, and then, you know, what kinds of treatment are going to help which children the most. Because sometimes having one structured one-on-one for many, many hours many not be necessary. It may be more important for a child to move into, you know, a regular peer group with some supervision. And so we don't want to get into just very pat recommendations.
CONAN: We're talking about autism diagnoses with Alan Zarembo of the Los Angeles Times and clinical psychologist Catherine Lord. Last fall, we talked about making the world work for adults with autism. You can find that at our website: npr.org. It's also a part of Alan Zarembo's series, the fourth part in his series, "Discovering Austism" that ran last week in The Los Angeles Times. Again, go to npr.org. You can find a link to that. This is TALK OF THE NATION, from NPR News. But, Alan Zarembo, we have to point out that this is not just ethics. Resources are involved. The state of California, as we all know, is having tremendous fiscal problems. That's true in many other states, as well. That factors into this, too.
ZAREMBO: Absolutely. The school district - I could start with the school districts - are in a bind between trimming their budgets and satisfying their obligations under the federal law that guarantees a certain level of help to these students. The law, though, only specifies you have to provide free and appropriate help to these students. So that becomes a matter of great debate, often in a legal setting, as to what is appropriate. Autism has become the leading source of disputes within special education between school districts and parents. Last year, there were about 2,800 disputes filed with the state, a third of them were for autism, even though autism only represents about 10 percent of the total number of children who are in special education in California.
CONAN: Thanks very much for your time today, Alan Zarembo, appreciate it.
ZAREMBO: Thank you so much.
CONAN: Alan Zarembo with the Los Angeles Times joined us from KPCC, our member station in Pasadena. Catherine Lord, clinical psychologist, director of the Institute for Brain Development at New York Presbyterian Hospital, joined us from our bureau in New York. And thanks to you.
LORD: Thank you.
CONAN: We'll end with this email from Jerome in New York - excuse me, in Marysville, Ohio: I'm an American. My wife is Japanese. Both our children were both in Japan. We realized very early our son had some sort of disability. I have learning disabilities, though managed to get my Ph.D. My wife has an MS in educational administration. One of the reasons we decided to relocate to the USA was the lack of services for our son. We lived in Hiroshima, and were told the closest specialist is in Tokyo - an all-day trip just to get there by car or train. In the USA, we still had to fight for services. I think my school district is good, but there was resistance to something they could not quantify.
Finally, the school psychologist told me, with a wink and a nudge, that the best thing to do for us was to get an outside diagnosis. That led to a year-long fight with the insurance company. Finally, I got the diagnosis, then the school district really stepped up to the plate. If the district had asked me to get an outside diagnosis from the very beginning, a lot of grief would have been spared to all of us.
As it turned out, he didn't get diagnosed until 14-and-a-half as a high-functioning autistic. He's doing well in school. His social skills are getting better, too. He's had good teachers. I think, though, if it wasn't for my wife and I fighting for him, which is a full-time job, he wouldn't be here doing so well in school, or in life, as he is.
Thanks to all of you who emailed and called us. We wish we could have gotten to all of your calls and questions. And thank you. And, again, we recommend you go read that series from the Los Angeles Times. The links are at npr.org.
Coming up: Ukulele master Jake Shimabukuro joins us. You won't believe your ears when you hear his cover of Queen's "Bohemian Rhapsody." Stay with us. I'm Neal Conan. It's the TALK OF THE NATION, from NPR News. Transcript provided by NPR, Copyright NPR.