Reflections on DSM5 and the Neurodevelopmental Disorders

Transcription

1 Reflections on DSM5 and the Neurodevelopmental Disorders Christine Lilley, PhD Registered Psychologist Complex Developmental and Behavioural Conditions Program Sunny Hill Health Centre

2 My Context Experienced in multidisciplinary diagnosis of FASD Work in a clinic that also sees individuals with other medical causes of learning and behaviour/self-regulation problems Work in a province where diagnosis is important for getting supports and services

3 Is FASD in the DSM5? -Sort of -There are references to it in the chapter on Neurodevelopmental Disorders -There is a related condition in Section III Conditions for Further Study

4 DSM: Diagnostic and Statistical Manual of Mental Disorders Published by the American Psychiatric Association Includes a list of diagnoses that the scientific community considers to be widely agreed on and supported by research, and specific criteria for diagnosing them. The Fifth Edition, DSM5, was released in May You can criticize it but it s hard to ignore it.

5 DSM5 What unites the things in the DSM? They are all things that are diagnosed behaviourally, not biologically. They are primarily descriptions of symptoms that occur together, without reference to biological cause.

6 Diagnostic layers 1. Behavioural or descriptive e.g. Intellectual disability Mostly laid out in the DSM 2. Medical or causal e.g. Down Syndrome or Trisomy 21 Mostly laid out in the ICD (International Classification of Diseases)

7 The hope was that eventually biological causes would be found that would tidily map on to the different categories. This has been disappointing (Thomas Insel).

8 While not perfect, DSM5 accommodates FASD better than DSM-IV did but you have to look closely to notice how.

9 Chapter One: Neurodevelopmental Disorders

10 -DSM IV had a chapter titled Disorders usually first diagnosed in infancy, childhood and adolescence -DSM5 has a chapter titled Neurodevelopmental Disorders

11 What are neurodevelopmental disorders? A group of disorders that: 1. Begin in childhood 2. Are permanent, with a relatively steady course 3. Are associated with factors affecting brain development

12 What are neurodevelopmental disorders? 4. Involve a failure to develop as peers do in personal, social, academic, or occupational functioning 5. Frequently occur together (comorbidity) Some authors also note that all these disorders are more common in boys.

13 What s in the DSM5 Chapter on Neurodevelopmental Disorders? Intellectual disabilities Communication (speech and language) disorders Autism spectrum disorder Attention Deficit Hyperactivity Disorder (ADHD) Specific learning disorders (learning disabilities) Motor disorders, including DCD and tic disorders

14 Comments -ADHD is placed with learning disorders (learning disabilities, intellectual disabilities) rather than with behaviour disorders (oppositional defiant disorder, conduct disorder). This is well supported by research on genetics and other causal factors. -This reflects the paradigm shift that we have long talked about in FASD by placing poor attention and impulse control with the other brain-based disability.

15 Comments Neurodevelopmental disorder is a good descriptive, behavioural word for the functional problems that those with FASD share: -It emphasizes the brain -It implies impairment -It works for those with and without intellectual disabilities

16 Comments FASD is a neurodevelopmental disorder where at least some of the cause is attributed to alcohol exposure. In fact, the DSM5 states that prenatal alcohol exposure is a potential cause of neurodevelopmental disorders (although not in a very prominent place).

17 FASD is a hybrid. Current systems of FASD diagnosis are hybrids of behavioural/descriptive diagnoses and medical/causal diagnoses. This is an uncomfortable fit with the DSM system.

18 There is one place in which the DSM5 talks about cause Neurocognitive disorder (deterioration or loss of cognitive skills) They separated the functional criteria from the causal criteria. e.g. Major neurocognitive disorder due to traumatic brain injury Mild neurocognitive disorder due to multiple etiologies

19 Causes of Neurodevelopmental Disorders 1. Most causes are things known to impact the physical and functional development of the brain. They may be prenatal or postnatal. 2. Most neurodevelopmental disorders have more than one cause. 3. Most causes have more than one outcome.

20 Some risk factors acknowledged in DSM5 -genetic disorders such as fragile X syndrome, tuberous sclerosis, and Rett syndrome -medical conditions such as epilepsy -environmental factors such as very low birthweight and fetal alcohol exposure (even in the absence of stigmata of fetal alcohol syndrome)

21 Some risk factors acknowledged in DSM5 Polygenic heritability (Language disorder, LD, ADHD) Severe and chronic social deprivation (ID) Child abuse, neglect, multiple foster placements (ADHD) Very low birthweight (ADHD, LD, DCD) Prenatal exposure to cigarettes (ADHD, LD) Prenatal alcohol exposure (ID, ADHD, DCD)

22 -DSM uses the language risk factors and associated with rather than causes and due to because at this point, much of the data is still correlational -but such risk factors are still considered significant and real enough that clinicians should flag them

23 The DSM5 acknowledges the negative impact of prenatal alcohol exposure. 1. In the text, prenatal alcohol exposure is listed as a known risk factor for neurodevelopmental disorders in general and for three diagnoses in particular: -Intellectual disability -Attention deficit hyperactivity disorder ( there may be a history of ) -Developmental coordination disorder

24 2. The DSM states that fetal alcohol exposure can affect neurodevelopment in the absence of stigmata of fetal alcohol syndrome (page 33)

25 3. If you are paying attention, the DSM5 even suggests a code that could be used for a diagnosis of FASD made in another system (315.8).

26 DSM5: Neurodevelopmental disorders None of the neurodevelopmental disorders have a single known cause However, for all of the diagnoses in this chapter, clinicians are encouraged to add specifiers describing known risk factors that apply (page 32)

27 DSM5: Neurodevelopmental Disorders This specifier gives clinicians an opportunity to document factors that may have played a role in the etiology of the disorder, as well as those that might affect the clinical course. (page 33)

28 Possible examples of specifiers Intellectual disability associated with Trisomy 21 ADHD associated with prematurity and extremely low birthweight ADHD associated with prenatal alcohol exposure

29 But in reality Most individuals who come to clinic for FASD would have to be described more like this: ADHD and language disorder and specific learning disorder affecting written expression associated with prenatal alcohol exposure?

30 Page 86 An example of a presentation that can be specified using the other specified designation is the following: Neurodevelopmental disorder associated with prenatal alcohol exposure. Neurodevelopmental disorder associated with prenatal alcohol exposure is characterized by a range of developmental disabilities following exposure to alcohol in utero.

31 What is an Other Specified Neurodevelopmental Disorder? -used where neurodevelopmental symptoms cause impairment, and do not meet the full criteria for one of the other disorders in the chapter. Used in situations in which the clinician chooses to communicate a specific reason that the presentation does not meet the criteria for any specific neurodevelopmental disorder

32 So, if you read the small print The DSM does suggest a numerical code and category to place FASD within the DSM system, presumably when some other diagnostic system for FASD is being applied. ( Other Specified Neurodevelopmental Disorder )

33 Recommendations Continue to use formal guidelines for diagnosis such as the 4 digit code or Canadian Guidelines Use the category label neurodevelopmental disorder to place FASD with conditions such as intellectual disability, autism, and genetic syndromes in its impact Don t believe that FASD is not a valid diagnosis because it s not in the DSM

34 Note that the Other Specified Neurodevelopmental Disorder term also provides an alternative way to characterize individuals who have the same functional difficulties as those with FASD, but without a clear history of alcohol exposure

35 e.g. Neurodevelopmental disorder associated with prenatal cocaine exposure and chronic early life trauma Is it ever appropriate to say and possible prenatal alcohol exposure?

36 Section III: Conditions for Further Study - These proposed criteria sets are not intended for clinical use; only the criteria sets and disorders in Section II of DSM-5 are officially recognized and can be used for clinical purposes. - Neurobehavioural Disorder Associated with Prenatal Alcohol Exposure

37 Summary of Criteria for ND-PAE A. More than minimal exposure to alcohol during gestation B. Impaired neurocognitive functioning C. Impaired self-regulation D. Impairment in adaptive functioning E. Childhood onset F. Clinically significant distress or impairment G. Not better explained by another diagnosis

38 Comments Raises visibility of FASD Does a good job of describing FASD Suffers by not requiring formal assessment, specific cutoffs for severity, and a multidisciplinary team Likely to include more people with milder symptoms than current criteria

39 Service Provision -there is growing recognition that a person can have severe learning and behaviour needs and permanent adaptive disability without meeting the criteria for intellectual disability -for instance, autism, FASD, some genetic syndromes -what s the word for this group? -I think it might be severe neurodevelopmental disorder

40 How does this Change the Conversation? We could imagine and advocate for a system of supports that are based on functional needs rather than cause This could be done by providing services to those with a. a neurodevelopmental disorder and b. severe functional problems regardless of the specific neurodevelopmental disorder or medical cause.

41 Why not just functional problems? These are actually harder to assess than you would think e.g. how many areas do you assess? How much do you rely on parent or observer report? They also don t speak to the permanence of the problem.

42 This would be fairer for those with rare causes, uncertain causes, and unknown causes This would allow families to make an uncoerced choice about whether to disclose a diagnosis