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1. Little Friends Center for Autism is an affiliate of Little Friends Inc. Little Friends Inc. is a non-profit social service agency that services over 800 children and adults with autism and developmental disabilities. Little Friends operates schools, community residential programs and adult day services. Specializes in… Comprehensive EvaluationsSpeech & Occupational Therapy Training for Parents & Professionals Applied Behavioral Analysis (ABA)ConsultationSocial Skills Groups Support Groups & Counseling Visual Training Systems Information & Referral

2. Understanding the Proposed ASD Diagnostic Criteria By Dr. Cynthia A. W. Brouillard, Psy.D. Director Evaluation Clinic Little Friends Center for Autism630-305-4196

3. Autism Spectrum Disorders As We Define Them Today • Autism Spectrum Disorder (also referred to as Pervasive Developmental Disorder) is an umbrella term which relates to a set of disorders associated with autism. Disorders in this category include the following: • Autism • Rett’s Syndrome • Asperger’s Syndrome • Disintegrative Disorder of Childhood • Pervasive Developmental Disorder – Not Otherwise Specified

4. Triad of Symptoms As currently defined, all autism spectrum disorders are defined by a triad of symptoms impacting the following areas. • Communication • Reciprocal Social Interactions • Restricted Interest/Repetitive Behaviors (RRBs)

5. Current Autism Criteria • A total of six (or more) from 1,2 and 3 with at least 2 from 1 and 1 from each of 2 and 3 • Qualitative impairment in social interactions, as manifested by at least 2 of the following: • Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures and gestures to regulate social interaction • Failure to develop peer relationships appropriate to developmental level • Lack of spontaneous seeking to share enjoyment, interests or achievement • Lack of social or emotional reciprocity

6. Current Autism Criteria • Qualitative impairments in communication as manifested by at least one of the following: • Delay in or total lack of development of spoken language without attempt to compensate through gesture • Given adequate speech, marked impairment in the ability to initiate or sustain conversation • Stereotyped and repetitive use of language or idiosyncratic language • Lack of varied, spontaneous make believe play or social imitative play appropriate to development

7. Current Autism Criteria • Restricted repetitive and stereotyped patterns of interest that is abnormal either in intensity or focus • Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus • Apparently inflexible adherence to specific, nonfunctional routines or rituals • Stereotyped and repetitive motor mannerisms (hand or finger flapping…) • Persistent preoccupation with parts of objects • Delays evident by age 3 years • Rett’s or Childhood Disintegrative Disorder rule out Autism

8. Why Change Things Now?? • To ensure that ASD is clearly, consistently and reliably differentiated from typically developing and “nonspectrum” disorders in a valid manner. • Distinctions among the disorders as they are defined today have been found to be: • Inconsistent over time • Variable across sites • Often associated with severity, language level or IQ rather than features of the disorder (www.dsm5.org/proposedrevisions)

9. Why Change Things Now?? • “Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category…” • In other words – ASDs are most accurately described as a spectrum rather than as an umbrella term relating to several different distinct disorders. www.dsm5.org/proposedrevisions

10. Where do you slice a meatloaf? Chickens have clear points of difference. Cleaving Meat

11. Establishing Diagnostic Criteria: The Process • The APA collaborated with the WHO (World Health Organization), NIH (National Institute of Health) and the M.I.N.D. Institute of the University of California, Davis to create a diagnosis-related research planning conference focused on pervasive developmental disorders. • This work began in February of 2008.

12. Focus of the Work Group • The work group was charged with the task of identifying criteria that would be more precise and accurate for ASD and to determine what data would be needed to recommend changes to current criteria. • All changes need to be: • Warranted by data and experience • Reliable, valid and developmentally sensitive • Field tested • Clinically useful and manageable

13. Panels Are Formed • What are the core symptom domains in autism? • Based on current research, what behaviors are the best predictors of a diagnosis of autism when seen in 2 year olds? • Can High Functioning Autism and Asperger’s be reliably distinguished from one another? • Core to the disorder or separate disorder (e.g., ADHD vs ASD – one in the same or different?) • How are fixated interests and stereotypes related to each other, to autism and to OCD? • Should RRBs be split into two categories: insistence on sameness and repetitive sensory motor behavior

14. Panels • How does the presentation of autism change over time? • Criteria chosen need to be applicable across the lifespan. • How does developmental regression (e.g., CDD) fit into the autism spectrum? • Must typical development precede regression? When does it happen? What causes it? How important are medical factors? Is CDD simply regressive autism with onset after 24 months?

15. Panels • Asperger’s Syndrome – Is it autism? • Does Aspergers have a distinct cause, course, cognitive profile and intervention needs and if so what is it’s relation to other ASDs? • Dr. Happe noted that “current criteria do not work: they do not allow for developmental change, the early language criteria do not demarcate groups with different prognoses, it is hard to apply the diagnosis for adult cases, and there is no clear conceptual basis for the diagnosis” (www.dsm5.org) • Dr. Sally Ozonoff also sited research in support of these conclusions

16. Panels • Is Autism a life long diagnosis? • About 7% of children will lose the diagnosis • Practical implications of defining a disorder by its level of severity: The FDA will not allow indications created for “autism” to transfer over to “PDD-NOS” even it is the same child with the diagnosis • How does comorbidity affect autism? • How does the co-occurrence of cognitive delays, emotional disorders…impact autism?

17. Panels • What role should neurobiology play in the diagnosis? • Genetic research has led to the identification of genetic abnormalities which are strongly associated with autism – how should these be addressed in the criteria? • Knowing the genetic defect does not provide a predictive description of the child’s behavioral manifestations. • Cultural and gender considerations and autism

18. What now? • Panels then convened into three breakout groups to develop recommendations on revisions to the current criteria given the information gathered by the panels.

19. Final Breakout Group: Conclusions • Delete Asperger’s Disorder • Delete Childhood Disintegrative Disorder • Create an ASD with two subtypes • Type I: prototypical cases characterized by problems in social interaction, social communication and repetitive behaviors • Type II: atypical cases

20. Final Breakout Group: Conclusions • Data needed to determine Type I vs. Type II: • The number of criteria to be met for Type I and Type II • Core symptomatology over various ages and developmental stages • Clarification of the requirements for diagnosis in females and diverse cultural groups • A definition of impairment at different ages and developmental stages • Consideration of the effects of IQ and comorbid diagnosis

21. Final Breakout Group: Conclusions • Additional questions to be answered: • Are OCD symptoms part of ASD or do they warrant a separate diagnosis? • Remove the ADHD exclusion • Add better examples for criterion items across the lifespan • Adopt a better definition of regression • Determine whether ASD remits and what a residual state might look like • Consider a genetic modifier

22. Three Domains Become Two • Social/Communication Disorder • Fixated Interests and Repetitive Behaviors

23. Why 2 Domains??? • Deficits in communication and social behavior are inseparable • Delays in language are not unique nor universal in ASD – they are a factor which influence the symptoms of ASD not a defining factor • Requiring both criteria to be completely fulfilled improves specificity of diagnosis without impairing sensitivity • Providing examples of subdomains for a range of chronological ages and language levels increases sensitivity across severity levels from mild to more severe • In the DSM-IV, multiple criteria assess the same symptoms and therefore carry excessive weight in making diagnostic determinations

24. Proposed Diagnostic Criteria • Must meet criteria in A,B,C and D • 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: • 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

25. Deficits in Social Communication • 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 deficit in understanding and use of nonverbal communication, to total lack of facial expression or gestures • Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those of caregivers); ranging from difficulties in adjusting behavior to suit different social contexts through difficulty sharing imaginative play and in making friends to an apparent absence of interest in people

26. Proposed Diagnostic Criteria • Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following: • Stereotyped or repetitive speech, motor movements or use of objects: (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). • Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change (such as rituals, insistence on same route or food, repetitive questioning, extreme distress at small changes).

27. RRBs cont. • 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). • 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).

28. Proposed Diagnostic Criteria cont. • Symptoms must be present in early childhood (but may become fully manifested until social demands exceed limited capacities). • Symptoms together limit and impair everyday functioning.

30. Why are some reports suggesting that mild/high functioning children on the spectrum may lose their diagnosis and in turn, their services???

31. Yale Child Study Center • Fred Volkmar, M.D. and his associates released preliminary results of a retrospective study they conducted • Their findings: “…in a group of individuals without intellectual disabilities who were evaluated during the 1994 DSM-IV field trial, it was estimated that approximately half might not qualify for a diagnosis of autism under the proposed new definition.” (Yale University, 2012).

32. Yale Child Study Center • Volkmar resigned from the DSM-V committee over early disagreements • His results have not yet been published and therefore have not been independently analyzed or replicated • Catherine Lord, Ph.D. has questioned these findings stating that “previous projections have concluded that far fewer people would be excluded under the change.” (1/20/12 New York Times). • In a CBS interview, Lord stated, “The intention of changing the DSM…is not to exclude those that already have been diagnosed, but to better define the condition.” “…We don’t want criteria that diagnose everyone with autism. So we want to do a better job of diagnosing the people who do…”

33. Questions

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