1 AND MORE, MARTIN L. LUBETSKY, MD 1 So I ll be covering neurodevelopmental disorders and I m going to focus on autism spectrum disorder, intellectual disability and briefly a few comments about communication and learning disorders. So as we all know and love DSM-IV-TR, the reason I highlight it and David Kupfer mentioned it earlier that if you go back in DSM history, PDD was on Axis II, it got moved up to Axis I, it got expanded into multiple diagnoses that we ll talk about and mental retardation was on Axis II. Many of the individuals that have these diagnoses also have Axis III medical disorders and have had many psychosocial stressors that are listed in Axis IV. So actually I have found the multiaxial diagnosis informational in describing these individuals. But as we have heard this is all changing in DSM-5 and so there is no multiaxial approach. And again this is important because this population does have multiple diagnoses and it s important to remember that the shift from the 5 Axis to a list does not mean we exclude diagnoses, we still will include if someone has autism spectrum disorder, intellectual disability, any genetic or medical conditions, they all still need to be listed, so one of my concerns is that people don t forget about this long list of diagnoses. They certainly should be in a priority order of what you are treating. In addition we ll be talking briefly about some of the relevant demential and assessment instruments and as you have heard that not otherwise specified was eliminated and I think PDD, NOS was one of many targets for eliminating NOS, but you will find as you have heard other specified or unspecified disorders throughout DSM-5.
2 AND MORE, MARTIN L. LUBETSKY, MD 2 So here is the list when you look into the textbook of DSM-5, the list of neurodevelopmental disorders. I m going to be doing a very brief overview, I m not going into research, I m not going into a lot of detail because you really do need to read DSM-5 as you start to get used to this. And I think listing too many words on the slide is hard to read and hard to pay attention to. So we ll talk about intellectual disabilities, communication disorders, autism spectrum disorder. I ll mention but we won t go into detail about attention deficit hyperactivity disorder, specific learning disorder, motor disorders which include tic disorders and other neurodevelopmental disorders. So this is the first change, this grouping of all these disorders under neurodevelopmental. So we are going to start with intellectual disability. As you also heard, this is a change from mental retardation and if you look at ICD 9 it s called intellectual developmental disorder, so in DSM-5 they list it as intellectual disability and I didn t put it on the slide, it s a lot of words; but in parentheses intellectual developmental disorder. This has been seen as both more politically correct and also what much of the rest of the world uses. So even though we are not yet coding and documenting the DSM-5 change myself and a lot of colleagues have shifted to using intellectual disability as the description rather than mental retardation. So this is deficit intellectual functions such as reasoning, problem solving, planning, abstract thinking, judgment, academic learning confirmed by standardized intellectual testing. The deficits in adaptive functioning are in 3 domains and we ll come back to some detail about this. The first domain is conceptual so looking at language, reading, writing, math, reasoning, knowledge and memory. The second domain social, empathy, social judgment, interpersonal communication skills and friendships. And the third domain, practical, self
3 AND MORE, MARTIN L. LUBETSKY, MD 3 management, personal care, job responsibilities, money management, recreation, organizing school and work tasks. So the definition for mental retardation was always looking at the IQ and looking at adaptive functioning. The definition under intellectual disability really expands on deficits and adaptive functioning. Its onset is during the developmental period, and as you have heard about specifiers severity is defined on the basis of these three adaptive functioning areas, conceptual, social and practical domains. And a strong emphasis in DSM-5 is to look at the whole individual, focus on their adaptive functioning, look at severity, mild, moderate, severe, profound and in addition look at standardized IQ scores. So you will not find the breakdown of IQ scores as the primary method to make the diagnosis, it s in the description but they really have tried to highlight adaptive functioning. There is a lot of rich detail in DSM-5, so for example under mild intellectual disability they breakdown conceptual domains and talk about somewhat concrete in approach, they look at social domain and talk about limited understanding of risk in social situations; practical domain support typically needed to raise a family. There is a large paragraph description under each of those. And then under moderate intellectual disability again each domain has a lot of description, you need to read that to really assess if a person fits in this area. So under moderate it might say ongoing assistance on a daily basis as needed to complete conceptual tasks of day to day life. Under social,
4 AND MORE, MARTIN L. LUBETSKY, MD 4 significant social and communicative support is needed. Under practical it lists that there may be maladaptive behaviors present. And then it continues under severe and under profound. And so this really rich descriptive language is important. I think most practitioners and clinicians have been used to looking for an IQ score, fitting it into one of these categories and stopping there. We know that there is many rating scales that help look at adaptive functioning, but I think this is a helpful change, certainly it will involve a little bit of extra work in looking at the range of adaptive functioning. In addition they added a category in DSM-5 so this is one we ve not heard of before, global developmental delay. For a child that fails to meet expected developmental milestones under the age of 5 and unable to complete assessment of intellectual functioning and one needs to reassess later. So for very young children people are always concerned do we give the diagnosis of mental retardation, we don t have all the information, we don t have IQ scores but we do believe that it exists. So now global developmental delay allows you to give a diagnosis with a code but it also says make sure you reassess and see whether they re this is actual intellectual disability or whether it really doesn t exist once you get past age 5 or 6. Briefly in communication disorders a new diagnosis in DSM-5 is social pragmatic communication disorder. And we will talk about this as we move into autism spectrum disorder as well. So this has difficulties in the social use of verbal and non-verbal communication, the primary focus of this
5 AND MORE, MARTIN L. LUBETSKY, MD 5 disorder. By all 4 so you need all four of these criteria; deficits in using communication for social purposes, impairment of the ability to change communication to match context or needs, so your conversational ability, difficulties following rules for conversation in story telling, difficulties understanding what is not explicitly stated. So these deficits result in functional limitations the onset is in early developmental period, so around age 4, 5 child is talking you would see these deficits and it is not attributable to another medical or neurological condition, it is not autism spectrum disorder, it is not intellectual disability. So we move into talking about autism spectrum disorder to show the difference. This new category was to focus on those children who met social communication difficulties, did not meet all the other behavioral repetitive, receptive behaviors that we ll talk about in a moment and one of the focus of DSM-5 was that these children would then be categorized and be able to receive treatment that really focuses on their speech and social. The other change in communication disorders in DSM-5 is language disorder is now one disorder that combines expressive language disorder and mixed receptive expressive language disorder. And the DSM-5 text explains that for some of the disorders where they lump things together it s because there both was not enough scientific evidence and there was not enough practical use by clinicians to have multiple disorders. So now they re both combined under language disorder and again specifiers dimensions all the other details will help clarify it. I m just going to mention under learning disorders changes as opposed to going into all the criteria and detail. So DSM-5 now has one category specific learning disorder and this is a single disorder
6 AND MORE, MARTIN L. LUBETSKY, MD 6 with specifiers for specific impairment in reading and/or written expression and/or mathematics. And again they said rather than having each of those 3 as separate disorders, they re putting it together under specific learning disorder and then you specify math, or written or reading or any or all of those. Mentioning the change in ADHD but not again going into detail about it. Attention deficit hyperactivity disorder has the same name in DSM-5, they made a couple changes. They raised the symptom onset from prior to age 7 years to prior to age 12 years and they said that 7 was somewhat artificial and that some kids were being missed by trying to limit it to that younger age and so the focus is symptoms that exist prior to age 12 years. Second change is that the symptoms threshold for older adolescents and adults age 17 and older was reduced to at least 5 or more criteria instead of the 6 or more symptoms for inattention and hyperactivity and impulsivity. So they re differentiating that we see ADHD as a lifespan disorder and those that are adolescents and adults may not have all of these same symptoms and criteria and especially the hyperactivity criteria that fits in children but may not be there in adolescents and adults. And the third category as it fits to my main focus about autism it is no longer an exclusion in autism spectrum disorder. So many clinicians were given ADHD along with the child having autism or PDD and that actually was an exclusion in DSM-IV and the decision was made that there are enough
7 AND MORE, MARTIN L. LUBETSKY, MD 7 symptoms and enough clinical and scientific focus on ADHD and autism that it now can be a comorbid diagnosis. So my primary focus is on autism spectrum disorder but that gave you a little bit of some of the other components of neurodevelopmental disorders. So currently in DSM-IV-TR we all know and love the diagnosis PDD; Pervasive Developmental Disorder and I had spent years trying to explain what it means and why that terminology. And under that are 5 categories currently; autistic disorder meeting the most criteria, PDD NOS meeting the least criteria, Asperger s Disorder which actually is currently the same code as PDD NOS, childhood disintegrative disorder which is little known but here is some research about it and Rett s disorder. So that s currently what we re all using in DSM- IV-TR. The current criteria are impairments in 3 categories; social interaction one, communication two, and the third restricted and repetitive interest activities and behaviors so those are the triad or the 3 criteria domains that we look at for current autism. Currently you need 12, there are 12 criteria across these 3 categories, you need 6 out of 12 to meet autistic disorder but you only need 2 out of 12 to meet PDD NOS. So this is giving you a little foreshadowing to what changes are and you only need 1 or more under the restrictive repetitive behaviors. So that s a lot to remember but that s the current criteria.
8 AND MORE, MARTIN L. LUBETSKY, MD 8 So the first change in autism spectrum disorder is that there s one category so now everyone will use that terminology ASD, Autism Spectrum Disorder. In the lay public and in the community people have been using ASD at least for the last 4 or 5 years, not because of DSM-5 it made sense to parents and families and caregivers and providers way before DSM-5 made the decision to change it. And what they said to give you a direct quote from DSM-5, Research has found that the separate diagnoses were not consistently applied across different clinics and treatment centers. So as many parents have said each place I go I get a different diagnosis under this category, is it really autism, is it really PDD? Anyone diagnosed with one of the four pervasive developmental disorder categories from DSM-IV should still meet the criteria for ASD in DSM-5 or another more accurate DSM-5 diagnosis. So Rett s disorder was actually removed and seen as a neurologic and genetic disorder even though some of those kids have autistic like symptoms and they re saying they re now lumping autistic disorder, PDD NOS, Asperger s disorder, childhood disintegrative disorder all under ASD. So now the second change is that those 3 domains are combined into two; deficits in social communication and social interaction. Many people have said how do you separate conversation, communication, language gestures from social interaction. We really are individuals that have social and language that combine and when they were separated it made it more complicated. So that s a big change combining social with communication, social interaction as one category. And then the second category is roughly the same, restrictive repetitive patterns of behavior, interests or activities.
9 AND MORE, MARTIN L. LUBETSKY, MD 9 So now if we look at numbers and some of the detail about why some kids get a diagnosis or do not. There s 7 total criteria instead of 12 so there s less that we have to look at to get the combined social and communication. You need 5 out of 7 to make the diagnosis of autism spectrum disorder. But remember before you only needed 2 out of 12 to make PDD NOS, so this leads to some people s concern you need more criteria to make this diagnosis. The other big change is you need 2 or more under restrictive or repetitive behaviors so there s a very strong focus in DSM-5 that autism is both social and communication impairments as well as impairments in restrictive repetitive behaviors and that s a big separator from that new social pragmatic communication disorder where there is no criteria for restrictive repetitive perseverative behaviors. So hopefully that s clarifying for you rather than confusing. So these are now the ASD DSM-5 criteria: persistent deficits in social communication and social interaction those 2 categories combined, manifested by all 3 so you have to meet all of them, it s no longer you have to meet 2 out of 4, 3 out of 4. Deficits in social emotional reciprocity, that give and take back and forth interaction, deficits in non-vermal communicative behaviors used for social interaction, eye contact, gestures other forms of non-verbal communication, deficits in developing, maintaining, and understanding relationships, making friendships, putting yourself in someone else s shoes. So you need to meet all 3 of those.
10 AND MORE, MARTIN L. LUBETSKY, MD 10 The second main category restricted repetitive patterns of behaviors, interests or activities. So having a neuro focus, repeating things over and over again, it may be your interests, it may be what you talk about, it may be in your behaviors and activities. You need at least 2 of these 4; stereotyped or repetitive motor movements use of objects or speech, insistence on sameness and flexible adherence to routines or ritualized patterns. Certainly that s one that most people view in individuals with autism that need to maintain a schedule, difficulty with transitions. Highly restricted fixated interests that are abnormal and intensely are focused, it s not just having an interest in something or knowing a lot about something but the intensity of that passion, of that focus is almost all consuming for that individual, and the fourth, hyper- or hyporeactivity to sensory input. So that s the fourth change in DSM-5 is that they added sensory processing abnormalities. Most people have always said individuals with autism have some sensory issues, but we can t find that in the criteria, so now that has been added as one of those 4 criteria that you have to meet too, sensory processing difficulties. The fifth change is that they relaxed the age of onset of the criteria. It used to say age 3 or earlier, now it says symptoms must be present in the early developmental period. And again as you ve heard with some of the other diagnoses rather than setting an age and then having people be so exact and specific, is it 3 years 1 month, is it 2 years 11 months, that they are saying it s early developmental period and don t get hung up on it having to be exactly 3 years or before.
11 AND MORE, MARTIN L. LUBETSKY, MD 11 The sixth change is really a DSM-5 focus, which is a lot of description in the specifiers and when you read the quick version of what are DSM-5 changes you are not going to get all this rich detail. So as we are all learning DSM-5 and we re not yet using it, we are not yet coding with it spend time with the diagnoses that you use most often and read the rich detail in the DSM-5 book because it s all these specifiers that then explain why this individual with autism is different than another individual with autism. So with or without intellectual impairment people are asking what happened to Asperger s disorder, well you are going to be able to describe Asperger s disorder through the specifiers, the severity, the dimensions that are listed in DSM-5. So someone with Asperger s disorder today in DSM-5 would be ASD without intellectual impairment. The second specifier, with or without language impairment. So someone with Asperger s disorder who has a lot of language and a lot of use of language but it s very narrow in focus and may have abnormal prosody, may sound a little bit different, odd, etc. then their specifier may be without language impairment because they have a certain amount of functional use of language. The third specifier associated with known medical or genetic condition. Well we certainly know that there are some causes of autism that we can identify. Where do we put it, because we ve lost Axis III in this multiaxial system. That would be a specifier, for example fragile X syndrome, or tuberous sclerosis, or Rett s disorder which was removed from being one of those categories, here is where you would list it as a medical because we know the chromosomal abnormality in Rett s disorder.
12 AND MORE, MARTIN L. LUBETSKY, MD 12 The fourth specifier, associated with another neurodevelopmental or mental disorder so we just talked about ADHD, it used to be an exclusion, well ADHD may be a comorbid disorder and you would be able to identify it s associated with another neurodevelopmental or mental disorder so you may be saying ADHD as well. And another big change in specifiers is with catatonia, so you heard in the last talk that catatonia is now a specifier across many disorders, well don t forget about autism. So there is a growing literature of case studies reported across the United States and actually the world of individuals with autism identified as having catatonia when the catatonia was treated that improved. And some ask the question so I ll preempt a questions, how do you know it s catatonia in someone with autism? Any diagnosis you make is a change from their normal functioning. If someone s normal functioning fit autism and then in addition they suddenly have all these other symptoms that fit the criteria for catatonia that s how you know it s another disorder, it s not just lumped in as part of their ongoing autism. So all of these specifiers will take a little bit of practice and reading to remember that we can give a lot more detail beyond just saying now this person is ASD. A seventh change, and I ll spend a little time talking about this, are the severity specifiers. So again the rich language in DSM-5 allows you to breakdown how severe is this person s autism. And in the lay public people used to say well my child has mild autism, my child has severe autism, what did that really mean? There was no explanation, it was more anecdotal. So now there is Level 1
13 AND MORE, MARTIN L. LUBETSKY, MD 13 requiring support, Level 2 requiring substantial support and Level 3 requiring very substantial support. Well you can t just stop there because at least for me I don t know what that means, so you have to go into the detail that DSM lists for you. And I ll just give a couple of examples. So for a Level 1 requiring support, for example a person who is able to speak in full sentences and engages in communication but whose to and fro conversation with others fails and whose attempts to make friends are odd and typically unsuccessful. So they actually give a lot of detail of explaining what kind of person we re talking about. I m not reading it all, I m just giving some snippets. Under this Level 1 requiring support for restricted repetitive behaviors problems in organization and planning that hamper independence and there s more example. So when you are trying to give a level of severity and you say this person has mild autism you really are going into more detail by looking at social and restrictive repetitive behaviors about what that means, requiring support but not as severe. So what s a Level 2, requiring substantial support? For example a person who speaks simple sentences, whose interaction is limited to narrow special interests and who has markedly odd, nonverbal communication. So that person sounds a bit more severe than the example that I read before. Under restricted repetitive behaviors that frequently that appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. So this explains that this person has behaviors that are more obvious, you see it more frequently, they are trying to show a difference between what s moderate and mild.
14 AND MORE, MARTIN L. LUBETSKY, MD 14 And then the third, requiring very substantial support, so that s the Level 3. And their example is a person with few words of intelligible speech who rarely initiates interactions and when he or she does makes unusual approaches to meet needs only in response to only very direct social approaches. So that certainly does sound like someone who needs more support who is more severe than the other two examples. Under restricted repetitive behaviors great distress, difficulty changing focus or action and as we describe it great difficulty with transitions with a change in schedule, change in routine, etc. So you really need to read that and use that in helping you to list. One of my concerns about this shift to ASD and DSM-5 is that people will just stop and say okay ASD, now I m done with the diagnosis. And just as making a diagnosis takes a certain degree of work in regard to history and interviews and rating scales, certainly given the diagnoses we need to use those specifiers, we need to use the levels requiring support. The APA DSM-5 Committee s response to concern of loss of services, there have been thousands of letters to the editor, s, articles, op-eds over the last couple of years talking about this change in ASD. Some were very positive and certainly some were fearful, many of them were from parents who were fearful that their child or adult would lose supports. DSM-5 Committee said all individuals with current diagnosis should not lose their diagnosis or services or school placement. And to be specific in one of the fact sheets that talk about ASD the study found the DSM-5 criteria
15 AND MORE, MARTIN L. LUBETSKY, MD 15 identified 91% of children with the clinical DSM-IV diagnosis suggesting that the new ASD diagnosis for children will retain their label, their diagnosis of ASD using the new criteria. There have been several other studies that have come out, another one showed 92%. So the point they are making is that the majority of individuals if you compared the diagnosis on DSM-IV to DSM-5 would retain their diagnosis. My guess is that some of those who did not may have fit under that social pragmatic communication disorder because they had something odd, unusual about their language, about their conversation and social but they did not have intellectual impairment, they functioned well in other areas and did not have any of the criteria under restricted repetitive perseverative types of behaviors. Other things that they said about why they made the change, that ASD is not necessarily all pervasive, so even in the descript of pervasive developmental disorder it implies all areas of functioning are impaired and certainly many individuals with PDD in the current description are not impaired in all their areas of functioning, so they wanted to get away from that notion of pervasive. And as I said Asperger s disorder currently is under PDD NOS so to talk about someone with Asperger s disorder as having impairment pervasively in all areas doesn t really fit for many individuals who are higher functioning in many of their areas of life. Another question that I ve been asked as we go through the criteria is what if you don t see it in that individual right at the moment that they ve walked into your office? All of this is current or by history, so again when you go through and read the language in each of those categories it says
16 AND MORE, MARTIN L. LUBETSKY, MD 16 current or by history. So certainly when you are assessing an adolescent or a young adult for autism and they ve not been given the diagnosis before you may not see all symptoms at that moment, you need a thorough history as you reflect back with that individual, with parents, with records, other caregivers, teachers, etc.; so current or by history. And just to end about autism spectrum disorder for those that are not seeing this population and are not aware of quite a change in prevalence, ASD has increased to 1 in 88 based on CDC 2012, boys 1 in 54, girls 1 in 252. When I was first learning in DSM-II and DSM-III autistic disorder was 4 in 10,000, so we certainly have seen a change. And for those who do work with kids or work with individuals with developmental disorders obviously we are seeing a lot more individuals with ASD and the need for a lot more services across all of our agencies. The other plug that I would like to put in is this is not just a childhood disorder, this is not as David Kupffer said that first section of DSM-IV, it s childhood disorders so if you don t treat kids just ignore it, you don t have to know about it. All of these children with ASD and ID grow up to be adults with ASD and ID, and so all the adult providers need to understand ASD and ID because you are going to be seeing them as an adult. And often they are not still seeing a child psychiatrist or a pediatrician and after age 21 they are not in school but they still have their diagnosis. We certainly do see a small number of adolescents, young adults and adults who have not been diagnosed before and they come in because they and others have read about the criteria, see it and then want to clarify
17 AND MORE, MARTIN L. LUBETSKY, MD 17 do they have the diagnosis. So that s one reason this was highlighted today, not just because of a lot of the change, but it really is important for all practitioners not just child practitioners. Okay, so that s hopefully everything you wanted to know about ASD, ID, neurodevelopmental disorders. My comment when I teach about this is we really have to wait and see what happens, so for everyone who is concerned about making this shift and will it really impact children and adults and service provision we really have to wait and see because some of the studies that reflected greater than 91% of the individuals maintain their diagnosis. No one is saying that if someone currently has a diagnosis you have to run and re-diagnose them because everything is changing to DSM-5, so the reality is this is much more of for the young children who are now going to be assessed as DSM-5 comes into play. And as Dr. Kupffer said we are not using DSM-5 in regard to coding and insurance but we are certainly thinking about it as we are assessing children and adults now. So I m going to stop there, thank you for being attentive.