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