NEXT S P E T After S Diagnosis A Presentation for parents of young children recently diagnosed with ASD January 19, 2011 Current Research at CAR Julianne Fretz Montgomery County Intermediate Unit October 17 th, 2012

Center for Autism Research (CAR) Looking for causes of autism and effective treatments Research studies for all ages Need children with autism spectrum disorders AND typically developing children Support for families/connections to services Our research is funded through a combination of federal and state grants and CHOP funding

– IBIS: siblings of children on the spectrum – EARLI: pregnant moms and their children Infant Program

Toddler/Preschool Program – SEED: ages (select PA and NJ counties) – Autism Treatment Network (ATN): ages – CLASS: ages 1-6 – Genetics Project: ages 4 and up – Nutrition Study: ages 4-6 – MEG Language Study: ages 3-5

School-aged Program – Social Functioning and Genetics – Anxiety in ASD – MEG Language Study – FaceStation – Oxytocin – Genetic Study – Autism Treatment Network – ATN

Adult Program -Genetics Study -Hyperspecificity study -Social Reward Processing

Benefits to Families Comprehensive assessments Detailed evaluation reports with recommendations Monetary payment varies by study – Many studies reimburse for travel expenses as well – Now have space in King of Prussia! Some studies can complete evaluations there Referral to services as needed – Full-time social worker – Resource guides and binders Interested families can participate in our studies with annual follow-up

autismMatch Research Directory matching families to autism research studies For children and adults of any age – with or without autism Enroll on-line or by mail in about 20 minutes Personal information kept confidential De-identified data is shared with autismMatch researchers throughout the region to speed up the process of understanding the causes of ASDs and effective treatments

Diagnostic and Statistical Manual (DSM) of Mental Disorders* DSM published by American Psychiatric Association (APA) To provide medical nomenclature for clinicians and researchers Common language and standards of diagnosis for classification of mental disorders To include specific diagnostic criteria, Facilitated by research-based work on the construction and validation of the criteria Revisions established by workgroups gathered by APA 9 * APA: accessed October 2012www.psychiatry.org/practice/dsm/dsm-history-of-the-manual

10 Evolution of DSM Descriptions; clinical utility; no PDD’s; autism as part of psychotic reactions children DSM I 1952 “Autistic” included under childhood schizophrenia DSM-II 1968 Category of PDDs: infantile autism, residual infantile autism, child-onset PDD, residual child-onset PDD and, atypical autism. DSM-III 1980 Category of PDDs: autistic disorder & PDD-NOS DSM-III-R 1987 Category of PDDs: Autistic disorder, Rett’s Disorder, CDD, Asperger’s Disorder, PDD-NOS DSM-IV (TR) 1994 (2000) Autism Spectrum Disorder DSM5 2013

Timeline of DSM-5 development Pre- planning white papers Phase Plan conf Phase appoint comm chairs draft written Field testing acad center Field testing in clinical practices draftin g text, data analysi s Spring 2012 criteria posted for input March Dec 2012 present to APA board May 2013 release of DSM-5 11

Rationale for changes in DSM-5 Reflects research – Identify core features social/communication AND repetitive/restrictive behaviors – Groups identified in DSM-IV are not necessarily stable over time (nor distinguishable from each other) Improved specificity – Fewer false positives Inclusion of important factors to be considered – Environmental features, intellectual functioning, language level, severity of symptoms, overall impairment Addition of “new” diagnosis – “pragmatic (social) communication disorder” 12

Core Symptoms Qualitative Impairment of Social Reciprocity – Diminished eye gaze & gesture, atypical play, diminished friendships Qualitative Impairment of Language as used for communication – Atypical language development, stereotyped language, absence of conversation Repetitive and restrictive range of interests – Interest in parts of objects, nonfunctional routines, stereotyped behaviors DSM-IV-TR

Autism is heterogeneous 14 ASD Behavioral Problems Language Delays Medical Comorbidities Cognitive Delays

DSM-IV-TR AutismAsperger DisorderPDDNOS Nonverbal Communication Difficulty with peer relationships Lack of social sharing Lack of emotional reciprocity Delayed LanguageNo – must not be delayed Impaired Conversations Stereotyped Language Delayed Pretend Play Circumscribed Interests Nonfunctional Routines Stereotyped Movements Preoccupation with Parts Onset before 30 monthsNot required Delayed cognitive, adaptive, or play skills Same as Autism – at least 1 required Same as Autism – at least 2 required May or may not be present At least 1 required

DSM-IV-TR AutismDSM-5 ASD Nonverbal CommunicationNonverbal communication Difficulty with peer relationshipsDifficulty with relationships Lack of social sharingSocial-emotional reciprocity Lack of emotional reciprocity Delayed LanguageGone (was not unique to ASD) Impaired Conversations Stereotyped Language Delayed Pretend Play Circumscribed Interests Nonfunctional RoutinesRoutines and Resistance to Change Stereotyped MovementsStereotyped Movements, Speech, Object Use Preoccupation with PartsUnusual Sensory Reactivity or Interest Onset before 30 monthsOnset in early childhood

DSM-5 levels severity Social communication Restricted interests & repetitive behaviors Level 3: requiring very substantial support Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; Very limited initiation of social interactions and minimal response to social overtures from others. Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly. Level 2: requiring substantial support Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; Limited initiation of social interactions and reduced or abnormal response to social overtures from others. RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest. Level 1: requiring support Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest. 17

Why bother changing the criteria? We know more about ASD than we did years ago, and we should apply that knowledge The system wasn’t really working (we had just adapted to it) Families often sought multiple evaluations and got different diagnoses Systems could exclude Asperger’s or PDDNOS from eligibility The diagnostic criteria were not well suited for adults, or for determining level of severity 18

What does research say about the change so far? ASD subtypes haven’t been validated Two-factor model (Social Communication & Repetitive/Restricted Interests) fits First studies of DSM-5 criteria may not be valid indicators: – Yale study: Used a limited dataset that would not have had all the information needed – Mattila et al.: Used an early draft of criteria – Frazier et al.: Used an early cutoff criteria 19

5 things to know about DSM-5* Consolidates categories under Autism Spectrum Disorders (ASD) New “severity scale” Not enough evidence to know if the new criteria -5 will restrict the ability to obtain an autism spectrum diagnosis Other diagnostic categories that may apply May facilitate more adult ASD diagnoses; unclear how it may impact diagnoses in young children 20 * See CAR handout, 2012

Ability to Obtain ASD Diagnosis DSM-5 criteria are worded differently than past versions of the DSM and contain new symptoms never before included No one can be sure of the effect of DSM-5 on the number of ASD diagnoses until new studies occur which perform evaluations of individuals using both the old and new diagnostic criteria. These prospective studies should also examine any effects of the new criteria on access to services. 21

SSI & SSDI The Social Security Administration offers 2 programs that support non-veteran working-age disabled individuals: SSDI –for those who have worked and paid into the system, and are now no longer able to work to support themselves SSI – For those have little or no assets to support themselves Likely greater access for those with an ASD diagnosis Social Communication Disorders ?

IDEA & Special Education IDEA defines who will have access to special education, not the DSM – no change However …. Those with a diagnosis of Asperger’s often have less access to services in some school districts – now that their diagnostic category is defined in the DSM - greater access!

ADA & 504 Accommodations Civil Rights protections – greater access!

Medicaid –funded Developmental Disability Services Healthcare services – Behavior Health and Rehabilitative Services Waiver Services – Home & Community Supports

Summary The ASD umbrella diagnosis - greater access – Eligibility is clear