PDD: Diagnosis or Not?

Female: And then there is the catch all one pervasive development disorder, not otherwise specified-- Male: What is that, but using these terms, we have to be a little bit careful because what does PDD mean now? Female: Well, PDD is the pervasive development disorders. Male: Fine, but what does that mean? Female: It means that there is a pervasive problem in development across all areas, so you have got pervasive problems in speech and language development, in social development, in intellectual development. Male: Let us make it simple, when you say pervasive, what do you mean by that term? Female: It is global. It occurs across all areas. Male: But then, define the word. That is important because you are using—you understand it, but maybe some of the people do not. When you say the word pervasive, what does that mean to you? Female: It means global and persistent. Male: No, I need more than that. You are going to say—what does pervasive mean? Language, does it mean expression, what? See because we have got to make it easy. Female: Pervasive to me means that it interferes with all areas of development. Male: So it is a global developmental problem? Female: That is right. It is pervasive in the sense that it is everywhere. It affects every aspect of your development. Male: See how difficult it is because you could put almost anything in that? Female: Yes, but there are— Male: And that is the problem. Female: That is the problem, but there are—that is the top category, but in that, there are five more defined areas. I mean, look mood disorder, it could also describe a million different things and so, the pervasive developmental disorders is just a global term. Underneath that, you have the more specific terms that diagnosticians would have to try and discriminate, so— Male: So it is not an easy subject to get it like, to put it in a nice category. Female: No, it is not, but I think the important thing for families really is that you do not want just—if your doctor says, I think your child has a pervasive developmental disorder, that is not good enough because that does not mean anything. Which one are they saying, you have to be more specific mainly because of intervention, education, if a doctor said to me, our parents come to me all the time, and they say, “My child has PDD.” Well, there is no diagnosis as Pervasive Developmental Disorder. It is either autism, Rett’s Disorder, Childhood Disintegrative Disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified. Male: That is why you have got to see an expert in developmental medicine to get the right label. Female: That is right. There are no such terms as autistic-like. No diagnosis. There is no diagnosis as mild autism. There is no diagnosis as PDD. Mild autism is a myth. There is no such thing. You either have autism or you do not and then you have the various symptoms. The other thing is that autism lays on top of cognitive abilities, so there is the normal bell shaped curve, which means that in the typical population, you have 2% of the population that are geniuses and 2% of the population are profoundly mentally retarded and the rest falls somewhere in the middle with most of us being in the average range having an IQ of around a 100. While autism has similar curve, so you have people who have classical autism who also have genius IQ and you have people who have profound mental retardation who also have autism. And so, you then start to see different symptoms, right? If you are profoundly retarded and you had autism, you would probably not have speech, you would probably have very, very slow development, and yet you would also have these symptoms of autism like flapping and rocking and not communicating with others and not making eye contact. Whereas, if you had a person’s classic autism who was very bright, they may develop speech and language. They may have fairly decent academic skills, but they will also have these symptoms of autism, such as engaging in repetitive perseverated behaviors like rocking or flapping and not using their language communicatively. Male: So this is a project that is just getting started, how to define it, how to treat it, are we doing a good job or bad job? Do we forecast what we know sometimes in 20 years, but you start something, is that right? Female: Well, that is true and there are really now refined—the DSM IV has been revised and revised and I think a new one will be coming out sometime in the future. Each time they do that, they strengthen the diagnostic features and so for example, I know that they are going to be many changes in the Asperger’s disorder diagnosis because they have only really been using it for about 12 years and they are still not very good at clearly identifying that group, so they are going to go back and those are going to be refined based on a lot of research. So I do think that if you have a child who has autism that they will be eventually be diagnosed at 12 to 13 months of age, and obviously the most important thing is you have a child with autism already and you have concerns about your second child, at six months, nine months of age, your concerns are probably justified because there is a high recurrence rate and so we often, for our families, if our families come in and have a second child that they are worried about, we will get them right away evaluated because of the high incidence of recurrence and so there are at risk with these second and third children. Male: So a good pediatrician should never ignore your concerns. They should be able to alleviate or refer you to the pediatric neurologist or a pediatric developmental expert or an expert on developmental medicine where we have very good people now. Female: Absolutely because there is too much to be lost by ignoring the problem and--