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Current Research at CAR Julianne Fretz
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Transcript of Current Research at CAR Julianne Fretz
NEXT S P
E T After
S Diagnosis
A Presentation for parents of young children recently diagnosed with ASDJanuary 19, 2011
Current Research atCAR
Julianne Fretz
Montgomery County Intermediate UnitOctober 17th, 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 childrenon the spectrum
– EARLI: pregnant moms and their children
Infant Program
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
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
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* APA: www.psychiatry.org/practice/dsm/dsm-history-of-the-manual accessed October 2012
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Evolution of DSM• Descriptions; clinical utility; no PDD’s; autism as part
of psychotic reactions childrenDSM I1952
• “Autistic” included under childhood schizophreniaDSM-II1968
• Category of PDDs: infantile autism, residual infantile autism, child-onset PDD, residual child-onset PDD and, atypical autism.
DSM-III1980
• Category of PDDs: autistic disorder & PDD-NOSDSM-III-R
1987
• Category of PDDs: Autistic disorder, Rett’s Disorder, CDD, Asperger’s Disorder, PDD-NOS
DSM-IV (TR)1994 (2000)
• Autism Spectrum DisorderDSM52013
Timeline of DSM-5 development
1999-2007Pre-
planning white
papers Phase 1
2004-07 Plan
conf Phase
2
2006-08 appoint comm chairs
2008-10 draft written
2010-11
Field testing acad
center
2010-12 Field testing
in clinical practices
2011-2012
drafting text ,
data analysi
s
Spring 2012
criteria posted for
input
March 2012- Dec
2012 present to APA board
May 2013 release of
DSM-5
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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”
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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
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ASD
Behavioral Problems
Language Delays
Medical Comorbidities
Cognitive Delays
DSM-IV-TR Autism Asperger Disorder PDDNOSNonverbal Communication
Difficulty with peer relationships
Lack of social sharingLack of emotional reciprocityDelayed Language No – must not be delayedImpaired Conversations
Stereotyped Language
Delayed Pretend PlayCircumscribed Interests
Nonfunctional Routines
Stereotyped Movements
Preoccupation with Parts
Onset before 30 months Not required Not required
Delayed cognitive, adaptive, or play skills
Same as Autism – at least 1 required
Same as Autism – at least 2 required
May or may notbe present
At least 1 required
At least 1 required
DSM-IV-TR Autism DSM-5 ASDNonverbal Communication Nonverbal communication
Difficulty with peer relationships Difficulty with relationships
Lack of social sharing Social-emotional reciprocityLack of emotional reciprocityDelayed Language Gone (was not unique to ASD)Impaired Conversations
Stereotyped Language
Delayed Pretend PlayCircumscribed Interests Circumscribed Interests
Nonfunctional Routines Routines and Resistance to Change
Stereotyped Movements Stereotyped Movements, Speech, Object Use
Preoccupation with Parts Unusual Sensory Reactivity or Interest
Onset before 30 months Onset 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.
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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
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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
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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.
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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