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Lesson 1: Overview of Speech, Language, and Communication

Overview of Diagnostic Criteria - DSM-IV-R


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Time: 00:08:55 Video 1.2. Overview of Diagnostic Criteria: DSM-IV-R Video Transcript
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DR. JOANNE GERENSER: So let's talk about the DSM-IV-R. The DSM-IV-R, which was used for many, many years, took as its umbrella title, the pervasive developmental disorders. Under the pervasive developmental disorders are five specific diagnostic categories. There's autism or autistic disorder, Aspergers disorder, pervasive developmental disorder not otherwise specified, Rett's disorder, and childhood disintegrative disorder, which I'll talk about a few minutes.

But basically, what they did when they looked at these disorders, they said there's got to be three areas that are impacted in order for you to fall under the pervasive developmental disorders. Those three areas include qualitative problems in social skills, qualitative problems in communication, and issues with repetitive or stereotypic behaviors. And they're typically manifested within the first three years of life. And you may see other conditions there, but they're secondary to autism.

So the diagnostical statistical manual is what diagnosticians use to evaluate and diagnose, and it contains all of the different psychiatric conditions. And it also contains the pervasive developmental disorders, of which I'll get into more detail.

So prior to 2013, which is when we introduce the DSM-5, the DSM-IV-R had the following conditions which I already mentioned, autism, Aspergers, et cetera. And so what I want to spend just a few minutes talking about is what that diagnostic criteria involved, because then you'll understand better what the changes were to the DSM-5.

So the diagnostic criteria for the DSM-IV-R basically said that you have to have a total of six symptoms and it had to be divided across the three what we call triad, the three primary areas. But they could be broken up in any different way, which is why if you add the math up, there are probably hundreds of different combinations of symptoms.

And for autism, the first diagnostic category, autistic disorder, these are the symptoms for social interaction. And I'm not going to go through each of them individually, but you can see they range from something like lack of social emotional reciprocity, which means if I smile at you, you don't smile back at me, all the way up to just not using eye contact or not being able to make friends. Right? And so you have to have some symptom within that area.

You have to have at least one symptom in the area of communication, and again, varies widely. Could be something like completely nonverbal, lack of any development of spoken language, all the way up to you use spoken language but you're not using it a very social way, or you're not using it to pretend. And you know, it's interesting when you look at the diagnostic categories or criteria that I'm describing now in the DSM-IV-R, look at these and then in the next section when we talk about the DSM-5, see how much more specific they got. See how much more descriptive they got, because the problem was that there was just too much variation.

The restrictive and repetitive behavior, of which you needed one symptom, here are the basic range of symptoms. And again, they can range from something like I'm preoccupied with a topic, all the way up to the very rudimentary behaviors that we associate with general classic autism, which would be the hand-flapping and the rocking. And all you need is one of those symptoms.

Some of the other things is that it has to be developed prior to the age of three, and it's not better accounted for by some of the other diagnostic categories. When you look at the diagnostic category for Aspergers disorder, again, the symptoms are the same. You have to have at least two symptoms in the area of social interaction. Those symptoms are exactly the same as you would see in autistic disorder.

And the same thing is true for the repetitive and restricted behaviors. You have to have at least one symptom there. Now what's different, what differentiates Aspergers disorder from autism, is that there is no clinical significant delay in language or in cognitive functioning. But to be honest, that's not a requirement for autism either. So this was a real issue. This is one of the factors that led to the development of the DSM-5 in terms of the changes in autism, because there was just too much gray area. There was too much overlap in the two diagnostic criteria.

A couple days ago, a mom came up to me and asked me-- I'd worked with her son when he was two and three up until he was about six or seven and then he went to a regular education school. And today he's actually graduated high school and he's going to start college in the fall of next year. And she was talking to me and saying how great he's doing. And she said, you know Joanne, people ask me all the time whether my son has Aspergers, which is what I've been using, or high-functioning autism. I want to know what you think. And I said frankly, I think he has high-functioning autism.

But honestly I have no idea. And the only reason I say that I thought he had high-functioning autism is because he had autism, he was diagnosed with autism at two. He clearly had autism at two. He did not have Aspergers. He was nonverbal until he was four. So he had autism. And in theory, you're not supposed to move through the diagnostic categories. Right? They're supposed to be mutually exclusive. So the fact but you could do that is one of the problems with the diagnostic categories.

Now in the DSM-IV-R, Rett's disorder was there. And with Rett's disorder, there were many differences between the other pervasive developmental disorders. So for example, it afflicted primarily only girls, which is very inconsistent with the autism spectrum disorders. There was clear regression. You saw a deceleration, for example, of head growth. A loss of previously acquired skills. A lot of hand-wringing behavior, de-generation in their gait, in their motor control. And it was very, very different from the other disorders, which is why when we talk about the DSM-5, you'll see that they took it out.

Childhood disintegrative disorder is also very different from the other pervasive developmental disorders in that there also is clear loss of skills. So in childhood disintegrative disorder, there's a period of normal development, typically, for at least two, maybe three years. And then there's a loss, a clinically significant loss of skills.

So kids can lose their ability to be toilet trained. They can lose their ability to talk. They can be talking in full sentences at two and a half and at five be completely nonverbal. Again, it's a loss of skills. It's not very common thankfully. You can imagine how tragic it is to have your child be three years old talking, and then systematically lose all these skills. And it is not better accounted for by any of the other pervasive developmental disorders.

The last diagnostic category in the DSM-IV-R is PDD-NOS, which stands for pervasive developmental disorder not otherwise specified, which I find to be probably the most ridiculous of all the diagnostic categories, because basically it says, use this category if you're not sure. I mean that's kind of what it says. Use this category if the child looks like he has some autism-like behaviors but doesn't quite meet the criteria for autism. So it was a real catch-all. A lot of kids were diagnosed with PDD-NOS, and then later re-diagnosed as having autism or Aspergers. And I think it's because diagnosticians just decided, you know what, I'm not going to use the term autism. Let it be somebody else who calls the kid autistic.

And so it's another factor that led to the development and the changes that you see in the DSM-5. So this is just a summary here of the disorder of the diagnostic category on the left-hand side and all the way through. And again, the primary domains that are affected in all of them are social communication and restricted and repetitive behavior. And what you're going to see is that there's just a tremendous amount of overlap, particularly in autism and pervasive developmental disorder and Aspergers, which we refer to essentially, as the autism spectrum disorders. And when we get to the DSM-5 you'll see that Rett's disorder and childhood disintegrative disorder have been removed, because they're very, very different.

If you take a few minutes to watch this video, you'll see it's about a diagnostician discussing how he goes about diagnosing autism and looking at the early signs of autism.

Interview With Diagnostician


Length: 00:12:37, Video 1.3. Autism Today With Dr. Joanne Gerenser Video Transcript

DR. JOANNE GERENSER: Welcome to Autism Today. It's a show about autism, and issues that we think are relevant to people living with autism, to families, and to members of the community. Today's show is going to be our introductory show, and it's a show about where we should get started with this, which is, what is autism? And how do we diagnose it?

But over the course of the next several shows, we're going to cover topics that can range from the research on intervention, to biomedical research, to things that are more practical, such as, how do you toilet train a child with autism? Or how do you manage difficult behaviors? How do you take your child with autism on vacation? So we hope that the show will be informational and practical to a lot of people, both who have autism, living with autism, or just the general community.

Today, we have a couple of very exciting guests. And as the shows go on, we will have many people who will come on who are experts in autism, or just have had a lot of experiences that will be practical and relevant. So today's show, as I said before, is going to be about, what is autism? How do we diagnose it?

How do we look for it in young children, if we're worried about what might be happening with our child? And we will be starting with our first guest, Dr. Ira Cohen, when we come back from the break.

Welcome back to Autism Today. I'm very excited about our first guest, Dr. Ira Cohen. I've known Ira probably for 25 years, at least. He's the chair of the Psychology Department at the Institute for Basic Research, right here in Staten Island, New York.

He's done a lot more work and research in the area of diagnosis and identification of autism than anybody I know, and he's well published in the area. So I'm very excited that he's here today to talk to us a little bit about what autism is, and how it's diagnosed. Welcome to the show.

DR. IRA COHEN: Thank you, Joanne.

DR. JOANNE GERENSER: So I know a lot of people don't really know what autism is, and it's hard to explain in a short period like this, but if you could just give us an overview of what it is, in a layperson's terms.

DR. IRA COHEN: Ok, I'll try. It's a disorder of development. And it's, from a family's point of view, it's very disheartening. Because it affects three basic things that a child needs to develop. One is communication, and the second is socialization. And the third is the child's imagination, how he or she plays with toys.

And it is the fact that those three areas are affected-- really impacts the child's ability to socialize and interact with other people. First with the mother and the father, and with the siblings. And so it's very disheartening. The types of things one sees are problems in making eye contact with other people, problems with responding to their name.

So you call the child's name, doesn't respond. You do it again, the child doesn't respond. Three, four, five times, and sometimes the parents suspect the child may have a hearing impairment. And the parents get the child checked, and the hearing is fine, there's nothing wrong.

The second thing is, the child's language fails to develop. And if it develops at all, the first things you'll notice, that the child may repeat back words that he's heard, and there doesn't seem to be any meaning behind it. It's as if you were talking to a parrot.

And the last thing is, most children develop early play skills. They want to interact with objects, and they want to interact with other people in a social play situation, and these kids don't do that. So it is those three areas, the triad of impairments in autism. The fact that they engage in these, or fail to engage in these social communication behaviors, and have problems with imagination, then you see what would appear to be rather odd behaviors appear.

So we have those motoric disturbances, like hand flapping, or finger twiddling, spinning in place, or repetitive toy play.

DR. JOANNE GERENSER: So let me ask you a question. What does it mean-- because I've heard people use terms like, my child has PDD, or people use the terms autism spectrum disorder, so generally, what does that mean?

DR. IRA COHEN: OK, well, the term PDD stands for pervasive developmental disorder. It's a term that the really came into vogue when the DS and the Diagnostic and Statistical Manual of Mental Disorders came out in 1980, the third edition came out. And that's when the term pervasive developmental disorder came.

And under that general umbrella term, under that general rubric, there are various kinds of PDD. And the fact that it's pervasive means that it affects multiple areas of functioning, it's a developmental disorder. Prior to that term coming out, autism was considered to be a form of schizophrenia. And research has indicated they're not really related.

And people realized it was a developmental disorder, and so this pervasiveness of this problem became apparent. And that's where the term came in. The spectrum term came in more recently. And it was the notion that what you're seeing is a range of problems. Some kids being the more classic type of autism that you see in the movie like Rain Man, and others having more subtle problems that often may not appear until the child is in first or second grade. And then he or she is having difficulty interacting with other people.

DR. JOANNE GERENSER: More of the social problems.

DR. IRA COHEN: More of the social problems, right.

DR. JOANNE GERENSER: So if I were concerned about my child-- because I know you can't get a blood test and say you have autism-- so how is it diagnosed? And where would I take my child? What would be your recommendations? Maybe you could explain what the diagnostic process is a little bit.

DR. IRA COHEN: OK, I'll try. It's going to vary with the diagnostician. But I would say any parent that has a concern about the child's development should bring the child to, well first, the pediatrician. That sometimes works. Many times it does, and it varies with the experience of the pediatrician and his or her practice.

If most of the people coming into the pediatrician's practice are perfectly fine, it's going to be, the rare pediatrician is going to recognize the child who's going to present with more subtle features of autism. i mean, if they're blatantly not responding to others, that's one thing. But if there are more subtle features, that's a problem.

So if there's a concern from that point of view, then you should seek out an experienced diagnostician. It could be a developmental pediatrician, a pediatric neurologist, a clinical developmental psychologist, a clinical psychologist. Somebody who has experience with this condition.

DR. JOANNE GERENSER: Right. So I guess-- because I know so many parents have said to me after their child was diagnosed, at let's say, three-- that they knew there was something not right about their child's development, but their pediatricians kept telling them to wait.

DR. IRA COHEN: Right.

DR. JOANNE GERENSER: So I guess, if you're really concerned, and you take your child to your pediatrician, and your pediatrician says wait, you would suggest that they really probably seek out somebody that has more qualifications in autism?

DR. IRA COHEN: Yes, I would say if there is a concern, and there's still the concern even if the pediatrician says wait, I would certainly seek out other opinions. Because we know that early intervention helps.

DR. JOANNE GERENSER: Right. So how do I know? How do I find somebody that has qualifications in autism? They don't have autism certifications.

DR. IRA COHEN: Well, I mean, nowadays we have the internet, right? You could go on the internet, do a search. And there are websites that you could go to, to get information on who's an experienced diagnostician in the area. There are parent organizations that you could go to. And you type in autism, or autism spectrum disorder, or PDD on the web, and you'll be able to get that information.

And also there's word of mouth, from speaking to other people. If you have a really good pediatrician, then he or she can make those recommendations.

DR. JOANNE GERENSER: If I took my child to, let's say, a pediatric neurologist, or a psychologist, what would the evaluation look like? So how would I know that I actually-- how long would it take, and what kinds of things should I expect?

DR. IRA COHEN: OK, well, in a typical pediatric practice, which is usually a bustling practice, they don't have a lot of time to do intensive analysis of the child's behavior. When you go see a professional, they will give you more time. And sometimes they may do developmental tests.

They'll do tests for autism, looking for autism spectrum behaviors. There are now well-validated observational procedures for determining whether or not the child's behavior looks suspicious. There are parent interviews and parent checklists that are around, that we can utilize to get that information.

So if you combine all that information-- strictly from a behavioral point of view, because we're dealing with a behavioral diagnosis-- I think it's important for families to recognize this is a disorder that is diagnosed because the child needs A, B, C behavioral criteria. Not because of a blood test. Not because of any medical evaluation the child has.

At least at this point in time. And there's research in the area, suggesting we may eventually get there, but not yet.

DR. JOANNE GERENSER: Right. OK, so it can't be a quick thing, it's going to be--

DR. IRA COHEN: It's going to be a while.

DR. JOANNE GERENSER: And I guess there are other terms. So for example, some family said, well, my child got diagnosed with PDD-NOS. But then somebody else said, no, they have autism. So there's all these other different things that fall, I guess, under the umbrella.

DR. IRA COHEN: Right.

DR. JOANNE GERENSER: Could you just kind of give me a brief-- what's the difference between PDD-NOS and autism? Or autism and Asperger's disorder?

DR. IRA COHEN: Well that's a good question. And in a couple years it's going to change rapidly.

DR. JOANNE GERENSER: OK.

DR. IRA COHEN: So as I said before 1980 autism was considered a type of mental illness similar to schizophrenia. And in 1980, they had this idea it really wasn't. Based on research, just not out of the blue.

DR. JOANNE GERENSER: Right.

DR. IRA COHEN: And there were three kinds of PDD at that time. And then in 1987, it went to two. And more recently, in 1994, it went to five.

DR. JOANNE GERENSER: Right.

DR. IRA COHEN: So we have typical autistic disorder, which is all of the problems I described earlier. We have something called Asperger's disorder, which ostensibly means that the person has problems in socialization, has problems with engaging in repetitive activities, or ritualized activities, but has no problems per se, with language.

They're language development was normal, unlike the typical child with autism. And their IQs tend to be rather high, or at least average, OK. Whereas most kids with autism test in the intellectually disabled region.

There's another disorder called Rett's disorder, which is a problem with the x chromosome. And it only affects girls, because boys usually don't survive if they have the condition. And it's a very debilitating condition. And then we have this thing called PDD not otherwise specified. Which, as its name implies, is a very vague label.

And in research, people have found it's very difficult, many times, to distinguish among PDD-NOS, Asperger's, and autism.

DR. JOANNE GERENSER: Right.

DR. IRA COHEN: Not so much Rett's, that's probably going to drop out. And I forgot to mention, disintegrative disorder, which is a very rare condition. But this is the case in which a child is developing perfectly normally up through three years of age, and then loses skills and looks autistic.

And if anything, those are the cases where you really think there's got to be an organic problem. And you look, and you don't find anything. It's very disheartening.

DR. JOANNE GERENSER: So you can see how complicated it is, and why it's such a maze that parents have to navigate through.

DR. IRA COHEN: That's right. And the fact that one diagnostician says the child has autism and the other says they have PDD-NOS, it probably doesn't mean a lot.

DR. JOANNE GERENSER: Well, we're going to continue this after the break, and we're going to bring on another person to help talk a little bit about some of these early signs, Dr. Mary Jane Weiss, so we'll see you all in a few minutes after the break.


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