! Impact of the DSM-5 Criteria for ASD Community Update - May 2013 By Katie Weisman, for the SafeMinds Research Committee

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1 ! Impact of the DSM-5 Criteria for ASD Community Update - May 2013 By Katie Weisman, for the SafeMinds Research Committee Introduction This month, the American Psychiatric Association will publish the latest edition of its Diagnostic and Statistical Manual the DSM-5. The manual contains significant changes to the diagnostic criteria for individuals with autism. 1. The name of the category will be changed from Pervasive Developmental Disorder to Autism Spectrum Disorder. 2. The four previous diagnoses: Autistic Disorder, Syndrome, Pervasive Developmental Disorder- Not Otherwise Specified and Childhood Disintegrative Disorder will all be combined into the single category of Autism Spectrum Disorder. Rett Disorder will be eliminated from the manual since the gene that causes it has been identified. 3. Three symptom domains will be reduced to two by combining the speech and social symptoms into a single category. The number of criteria has been reduced from 12 to Severity codes will be added for each symptom domain, though the details are unclear at this time on how severity will be judged. Criteria The new criteria under the DSM-5 are as follows: Autism Spectrum Disorder Currently, or by history, must meet criteria A, B, C, and D: A. All individuals must have or have had persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following: 1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction, 2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures. 3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people B. All individuals must have or have had restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following: 1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes). 3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

2 4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects). C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) D. Symptoms together limit and impair everyday functioning. In addition, the DSM-5 introduces a new disorder, not on the autism spectrum, with the following criteria: Social Communication Disorder A. Social Communication Disorder (SCD) is an impairment of pragmatics and is diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability. B. The low social communication abilities result in functional limitations in effective communication, social participation, academic achievement, or occupational performance, alone or in any combination. C. Rule out Autism Spectrum Disorder (ASD). Autism Spectrum Disorder by definition encompasses pragmatic communication problems, but also includes restricted, repetitive patterns of behavior, interests or activities as part of the autism spectrum. Therefore, ASD needs to be ruled out for SCD to be diagnosed. D. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities). Social Communication Disorder will be the diagnosis for anyone who meets all three of the Autism Spectrum Disorder speech and social criteria but none of the repetitive and restrictive behavior criteria. There is currently a gap between ASD and SCD, with no clear diagnosis for someone with all three speech/social domain criteria but only one criteria under the restricted and repetitive behavior/sensory domain.! Research Summary Further studies are in process, but at this point, it is fair to expect that the result of the DSM-5 criteria will be a reduction of ASD diagnoses of at least 20% relative to the DSM-IVTR criteria. The data supports that the largest reductions will be in those formerly diagnosed with. What remains completely unknown is whether a portion of that reduction will be compensated for by cases that the DSM-5 identifies that would not have met the DSM-IVTR criteria. However, the only data showing an actual increase in ASD diagnoses overall was the field trials which involved only 83 children at two clinical sites and included no toddlers or adults. The only other study reporting a substitution effect was Wilson et al., 2013 which showed a 21% reduction vs. DSM-IVTR even after allowing for the additions from DMS-5 picking up extra cases. Recommendations For Parents: 1) Document your child s history so that if something happens to you there will be a record of symptoms your child had in the past. Keep a folder with all previous professional evaluations in one place in case your child needs to be re-assessed using the new criteria. 2) For parents seeking a new diagnosis, recognize that a toddler may not obviously meet the new criteria. Be sure that both the OS and I-R are used along with a detailed history, if at all possible but keep in mind that these assessments will likely be updated to reflect the new criteria. If that isn t possible, be sure to make a complete list,

3 before the evaluation, of all behaviors your child exhibits. Note ways in which these behaviors impact your child s functioning. 3) If your child is one that may be diagnosed with Social Communication Disorder, document any speech issues that your child has and ask for a dual diagnosis along with an established speech language disorder in order to leave no question about speech services eligibility. Use the SCD diagnosis to advocate for additional social components to your child s program. Below is a chart summarizing the studies to date with regard to the comparison between the current DSM-5 and DSM-IVTR criteria. Authors Diagnoses Sample Breakdown Age Overall % PDD- Included Size by Diagnosis Range ASD % Change NOS % Change Change % (Decrease) Change McPartland yrs. (39.4%) (24.2) (71.7) (75) Volkmar 159 Mean Matson (47.8%) (24.3) (79.9) N/A et al. 342 Months Worley Matson N/A 180 N/A 3-16 yrs. Mean 8.3 (32.3%) Gibbs (23.4%) (10.2) (50) (16.6) 34 Years 18 Mean 6.1 Taheri (37%) (19) (83) N/A Perry 36 Years Mean 6.4 Field Trials yrs. (19%) or 23 Approx. 5% increase 21 Mean 12 See notes above Mazefsky 498 All three 5-61 yrs. (0-7%) With the caveat that both the OS and the et al. diagnoses Mean I-R be used together, including the non-algorithm were treated 21.8 yrs I items for RRBS. Without the caveat, the drop in as one group. Mean IQ overall ASD diagnosis using the DSM-5 was an % drop. Using the I-R alone gave a 17% drop.

4 Turygin ASD This study was designed to look at the levels of et al. (DSM- months impairment of toddlers with DSM-IVR vs. DSM- IVR) 279 IVR+DSM-5 diagnoses and other DD children. It ASD found that toddlers who also met both sets of criteria (DSM-IVR had more difficulties on various measures of the + DSM5) Battelle Developmental Inventory than toddlers who only met the DSM-IVR criteria. Huerta (9%) 971 Yrs. See notes 251 Mean sites Beighley 328 Not given 2-18 (33.2%) Challenging behaviors were more Yrs. similar between the ASD groups Mean diagnosed by the DSM-IVTR criteria 8.01 vs. the DSM-5 criteria than they were to controls who met neither set of criteria. Wilson 80 Not given (24%) using Yrs. DSM-IVTR Mean 31 (44%) vs. ICD-10R Barton 284 Not given Sensitivity of the DSM-5 criteria for 39.4 toddlers did not get to.90 until the Months algorithm was relaxed to 2 of 3 Mean speech/social behaviors and 1 of RRB behaviors. Months!! For more information and the full version of this article, please visit

5 DSM-IV TR (current standard) DSM-5 (May, 2013) "Pick Six" Impaired social interaction (two required) Reciprocity, nonverbal behavior, relationships, shared interests Plus one of the following communication skill problems required Eye contact, language, initiate/sustain interactions, imaginative play (no language impairment required for Asperger's Disorder) (no cognitive impairment required for Asperger's Disorder) Plus one of the following repetitive behavior patterns Routines, stereotypic, restricted interests, sensory, preoccupations Plus Onset before age 3 And impairment of social or language or symbolic/imaginative play Not Rett's Disorder or Childhood Disintegrative Disorder "All Four Required" Impaired social and communicative interaction (all three required) Reciprocity, nonverbal behavior, relationships (shared interests, etc) Plus any two of the following required Eye contact, language, initiate/sustain interactions, imaginative play Body language, understanding, tolerance for change, symbolic play Ritualized patterns, focus on details Plus two of the following repetitive behavior patterns Routines, stereotypic, restricted interests, sensory, preoccupations Plus Onset in early childhood (not necessarily before age 3) or later And symptoms together limit and impair everyday functioning Not just General Developmental Delay 2012 Steve Kossor Permission to duplicate is granted to parents and their advocates

6 The primary purpose of diagnosis is to classify and categorize a person to establish a rationale and justification for treatment funding. A person s treatment plan is not defined by their diagnosis. If it were, then only one treatment plan would be needed to treat any person with autism. We all know the truism If you ve met one person with Autism, you ve met one person with Autism. so it is obvious that diagnosis has relatively little to do with responsible, ethical treatment planning. The highlighted section is the DSM-IV TR standard for diagnosing autism which is the current standard defined by the American Psychiatric Association in its Diagnostic and Statistical Manual of Mental Disorders, version IV (Text Revision). Note that many state Medicaid Plans explicitly reference the DSM-IV diagnostic criteria so that they may require the use of DSM-IV criteria to establish the medical necessity of a treatment plan under Medicaid, while the PRIVATE insurance industry adopts the DSM-5 standard. 1

7 The highlighted section is the proposed DSM-5 definition of autism spectrum disorder which is expected be the standard as of May of 2013 for diagnosing autism spectrum disorders according to the American Psychiatric Association in its Diagnostic and Statistical Manual of Mental Disorders, version 5. 2

8 The highlighted area summarizes the DSM-IV TR standards by identifying key disability areas. Some people have referred to DSM-IV as a pick six standard which seems to be more liberal than the all four required standard seemingly set by DSM-5. Both of these perceptions of the DSM standard are oversimplified, incorrect and misleading. Circle the concepts in the highlighted section below the DSM-IV TR standard. You can check to make sure that the highlighted concepts are actually contained in the DSM-IV TR standard directly above. Note that, under DSM-IV TR the child s condition must have had an onset before age 3. DSM-5 sets no such limit on the age of the child; this is a significant improvement. 3

9 Now, circle the exact same words in the highlighted section below the DSM-5 standard. You can check to make sure that the circled concepts are actually contained in the DSM-5 standard directly above. You will notice that all of the DSM-IV TR standards are incorporated into the DSM-5 standards and that DSM-5 actually includes standards that were overlooked in DSM-IV. Thus, DSM-5 is actually a better definition of Autism spectrum disorders than DSM-IV. It is also more aligned with the world standard of diagnostic classification (the International Classification of Diseases version 10 or ICD- 10). The biggest difference between DSM-IV TR and DSM-5 is that DSM-5 requires the condition to limit and impair every day functioning. Under DSM-IV TR, it is possible to diagnose high functioning Autism (sometimes called Disorder) that does not limit and impair every day functioning. However, if a person s functioning is not limited or impaired, then the existence of a clinical syndrome or disabling condition is debatable the person may not be normal but if they are not impaired, there is no need for a diagnosis because there is no need for funding to treat their condition. Note that the extent to which a condition serves to limit and impair every day functioning is a continuum. It is not required that the condition severely impairs functioning, but some level of limitation and impairment is obviously necessary in order to justify the diagnosis of any disorder. This is the Diagnostic and Statistical Manual of Mental Disorders, and is used to determine if funding for the treatment of mental disorders is appropriate. Autism Spectrum Disorders in DSM-5 are, just as in DSM-IV TR, mental disorders. If they were not, it could present grave consequences for treatment funding through Medicaid s EPSDT program and any number of recently passed state laws mandating funding for the treatment of Autism Spectrum Disorders. 4