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Current Research at CAR Julianne Fretz

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

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Current Research at CAR Julianne Fretz

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  1. Current Research atCARJulianne Fretz Montgomery County Intermediate Unit October 17th, 2012

  2. 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

  3. Infant Program • IBIS: siblings of children on the spectrum • EARLI: pregnant moms and their children

  4. Toddler/Preschool Program • SEED: ages 2.5-5 (select PA and NJ counties) • Autism Treatment Network (ATN): ages 2 -17.5 • CLASS: ages 1-6 • Genetics Project: ages 4 and up • Nutrition Study: ages 4-6 • MEG Language Study: ages 3-5

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

  6. Adult Program • Genetics Study • Hyperspecificity study • Social Reward Processing

  7. 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

  8. 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

  9. 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 * APA: www.psychiatry.org/practice/dsm/dsm-history-of-the-manual accessed October 2012

  10. Evolution of DSM

  11. Timeline of DSM-5 development

  12. 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”

  13. 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

  14. Autism is heterogeneous

  15. Same as Autism – at least 2 required At least 1 required May or may not be present At least 1 required Same as Autism – at least 1 required

  16. DSM-5 levels severity

  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 * See CAR handout, 2012

  20. 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 ?

  22. 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!

  23. ADA & 504 Accommodations Civil Rights protections – greater access!

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

  25. Summary • The ASD umbrella diagnosis - greater access • Eligibility is clear

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