Transcript Slide 1

Beyond Screening: Identifying
Autism Spectrum Disorders in
Primary Care Practice
Modified from the Educating Practices in the Community (EPIC) Program
for
The Child Health and Development Institute
Sarah Schlegel, M.D.
Developmental-Behavioral Pediatrician, Connecticut Children’s Medical Center
Assistant Professor of Pediatrics, University of Connecticut School of Medicine
Jennifer Twachtman-Bassett, M.S. CCC-SLP
Autism Clinical Specialist and Research Coordinator
Connecticut Children’s Medical Center
1
Disclosure
Sarah Schlegel and Jennifer TwachtmanBassett do not have any actual or apparent
conflict of interest related to the content of
their presentation; they do not have
financial interest/arrangement of affiliation
with any organizations that could be
perceived as conflict of interest in the
context of the subject of their presentation.
2
Learning Objectives
• Participants will be able to:
– Describe three changes to autism diagnosis
– Name 2 screening instruments designed for
children over the age of 3.
– Describe 2 ways to respond to parent
concerns regarding autism spectrum disorder
– Describe 3 ways to support families when a
child receives a formal diagnosis of autism
spectrum disorder
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Autism Spectrum Disorder
- DSM V
New name for “autistic disorder”, which
includes:
– Autistic disorder (classic autism)
– Asperger’s disorder
– Pervasive developmental disorder- not
otherwise specified (PDD–NOS)
– Childhood disintegrative disorder
Diagnostic and Statistical Manual of Mental Disorders, 5th ed.
Wash. DC. APA, 2013
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Autism Spectrum Disorder
(DSM-V)
A. Social and communication deficits, must have 3:
• Limited social/emotional reciprocity
• Nonverbal communicative behavior
• Deficits in developing and maintaining relationships
B. Fixed interests & repetitive behavior. Must have
at least 2:
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•
•
•
Repetitive speech, motor movements, and/or use of objects
Excessive adherence to routines
Highly restricted or fixed interests
Atypical sensory responses
C. Symptoms present in early childhood (but may
not be fully manifest until social demands exceed
limited capacities)
D. Symptoms together limit and impair everyday
functioning
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Autism Spectrum Disorder
(DSM-V)
Three new “Severity Levels” for ASD:
1.Requiring very substantial support:
– Severe impairments in social-communication functioning
– Preoccupations, rituals and/or repetitive behaviors (RBs)
interfere with all aspects of functioning. Marked distress when
routines are interrupted
2.Requiring substantial support:
– Marked deficits in functioning are apparent even with support
– RBs are frequent enough to be obvious to the casual observer
and interfere with functioning in many contexts. Distress is
apparent when routines are interrupted
3.Requiring support:
– Deficits are noticeable when supports are not in place
– RBs cause significant interference in functioning. Resists
redirection
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ICD-10
• Will be implemented October 1, 2014
• Nine different disorders under autism:
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–
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F84—PDD
F84.0—Childhood Autism (Kanner autism)
F84.1—Atypical autism
F84.2—Rett Syndrome
F84.3—Other Childhood Disintegrative Disorder
F84.4—Overactive Disorder associated with Mental
Retardation and Stereotyped Movements
– F84.5—Asperger syndrome
– F84.8—Other Pervasive Developmental Disorders (no
description given)
– F84.9—Pervasive Developmental Disorder, Unspecified (no
description given)
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What about the older child (>4)?
• Many children are missed by early
screening instruments.
– Designed to catch delays, more able children
may not demonstrate delays at early ages
– Age out: M-CHAT ends at 30 months
– Subtle symptoms:
• May not be evident in a short office visit
• Child may have strong talents / strengths
• Child may not appear atypical until he/she is
seen in the context of a larger group of peers
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Parent Concerns Warrant Attention
Parents continue to frequently
report a gap between concerns
about their child’s development
and a diagnosis of an autism
spectrum disorder.
(Carbone, Behl, Azor, & Murphy, 2010; Ryan &
Salisbury, 2012)
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“Red Flags” for older
children
 Difficulty having a back-and-forth
conversation
 Difficulty understanding / using nonverbal
signals (gestures, facial expressions)
 Difficulty developing and maintaining
friendships with peers
 Formal speech
 Difficulty understanding humor
 Limited imagination and/or pretend play
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Parents may report…
• Bullying
• Child has few friends
• Child is smart but isolates himself/herself from
social situations
• Significant anxiety
• Obsessive interests and/or behavior
• Child is overly social and is rejected by peers
• Child “has no common sense”
• Child previously did well academically but is now
struggling
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Screening older children (age 4+)
Screen if there are parent concerns
•Recommend screening to children who
exhibit “red flags”
•Family history of ASD (siblings, etc.), but
passed early screening / evaluation
•Concerns by school personnel regarding
ASD or related disorder
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Childhood Autism Spectrum Test
(CAST) (Scott, Baron-Cohen, Bolton, & Brayne, 2002)
•Recommended on the CDC website
•Ages 4-11; 39-item parent questionnaire
•Easy to administer
•Has been used as a general population
screen in research studies
•Determines need for further evaluation but
does not diagnose
•Free and available for use:
– Online version: http://psychology-tools.com/cast/
– www.autismresearchcentre.com Need to create an
account in order to download
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Childhood Autism Spectrum Test (CAST)
Sample questions
1. Does s/he join in playing games with other children?
5. Is it important to him/her to fit in with the peer group?
6. Does s/he appear to notice unusual details that others miss
7. Does s/he tend to take things literally?
8. When s/he was 3 years old, did s/he spend a lot of time pretending
9. Does s/he like to do things over and over again, in the same way
all the time?
11. Can s/he keep a two-way conversation going?
14. Does s/he have an interest which takes up so much time that s/he
does little else?
20. Is his/her voice unusual (e.g., overly adult, flat, or very
monotonous)?
29. Is his/her social behaviour very one-sided and always on his/her
own terms?
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Name of
Instrument
Description
Autism Spectrum Screening
Questionnaire (ASSQ)
(Ehlers, Gillberg, & Wing,
1999)
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•
Autism Quotient—Child
Version
(Auyeung, Baron-Cohen,
Wheelwright, & Allison,
2007)
•
Autism Quotient—
Adolescent Version
(Baron-Cohen, Hoekstra,
Knickmeyer, & Wheelwright,
2006)
•
Social Communication
Questionnaire (SCQ)
•
•
(Rutter, Bailey, & Lord,
2003)
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•
•
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Age
Availability / Cost
27 items
10 minutes
6-17
years
•
Parent report
questionnaire
50 items
4-11
years
• Available free from:
www.autismresearchcentr
e.com need to create
an account in order to
download
Parent report
questionnaire
50 items
12-16
years
• Available free from:
www.autismresearchcentr
e.com
< 10 minutes
Parent
response scale
40 items
Based on the
ADI-R
anyone
over age
4
(mental
age over
age 2)
Available from WPS
www.wpspublish.com
$129.00 for autoscore
version with 20 current
and 20 lifetime forms
included
Available from Journal
of Autism and
Developmental
Disabilities
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Billing
• 96110 for any developmental screening
(e.g. ASQ, CAST, PEDS) done with a
formal screening tool
• Can be billed on the same day as a well
child exam or with other visit
• Modifiers 25 and 59 – (distinct procedural
service)
• Bill follow-up office visits with E&M codes
99212-99215
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Parent
completes
CAST
Screens
Negative
Clinical staff
scores, review
results
No Concerns
•
•
•
PCP discusses
results
Provides anticipatory
guidance
No immediate action
needed
• Parent concerns
• Red flags
Screens
Positive
PCP discusses
results and
concerns with
parents
Further concerns
•
•
•
•
Provide anticipatory guidance
Monitor development
Rescreen at next well child visit
Refer to Child Development
Infoline
•
•
•
PCP discusses results / concerns
with parents
Refer to Child Development
Infoline
Directly refer for further evaluation
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Why refer?
• Short office visits = insufficient time to
diagnose some children
– Diagnosis can be complex for some children, but
is possible with sufficient assessment (i.e.
additional standardized assessment)
– Symptoms of more able children with ASD are
subtle in young children, but can become more
apparent over time.
– Research: greater gains with earlier intervention
– There is significant symptom overlap with many
other disorders, and/or comorbidity
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When there are Concerns: Open the
Conversation
“I agree with your concerns about …”
“Your answers to the questionnaire
told me ______________
1. We need to speak further…
2. I’d like someone to take a closer
look at…
3. This is a “working diagnosis…”
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Referrals for Comprehensive
ASD Evaluation
For further consultation:
•
Connecticut Children’s Medical Center
– 860.837.5916 (number for providers)
– 860.837.5915 (number for families)
•
UCONN Dept of Psychology (Storrs)
– 860.486.2538
•
Yale Child Study Center
– 203.785.3420
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If a child receives a diagnosis of
autism spectrum disorder…
What are the next steps?
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Medical Search Strategy
The American College of Medical Genetics and Genomics (ACMG)
(2010), recommends microarray CMA as a first-line test in the
initial postnatal evaluation of individuals with the following:
•Multiple anomalies not specific to a well-delineated genetic
syndrome
•Apparently nonsyndromic developmental delay/ intellectual
disability
•Autism spectrum disorders (after diagnosis is made)
CMA has higher sensitivity than standard G-banded karyotype for
submicroscopic deletions and duplications and offers a diagnostic
yield of 15-20%.
Array-based Technology and Recommendations for Utilization in Medical Genetics
Practice for Detection of Chromosomal Abnormalities. Genet Med 12:11:742-745.
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Educating Families about
Microarray
• Test method: Blood draw
– Can this be combined with other needed tests?
• Explain what the test is looking for and
possible results parents might expect
• Be prepared to explain any abnormal results
to families
• Support families if they refuse or want to
postpone test
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Guidelines for Ordering Microarray
• Obtain pre-authorization if the family has
private insurance
• Encourage families to check with their
insurance company
• Check if test is only covered at specific labs
(Husky)
– Husky coverage guidelines:
http://www.huskyhealthct.org/providers/provider_posti
ngs/policies_procedures/Genetic_TestingDD_ASD_and_MR.pdf
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Referrals for Additional Evaluation may be
Recommended by the Diagnostician
•
•
•
•
•
•
Psychological
OT (sensory processing)
Speech therapy
Feeding Team
AAC Clinic
Behavioral health / Psychiatric
– Behavioral issues; Comorbid d/o; differential diagnosis
– Medication
• Neuropsychological
Evaluations may be medically-based or school-based
PCP can facilitate connections for families
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The First Step: Establishing Services
1. The parent needs to call the school district’s
special education department or office of special
services
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–
–
The family will need the diagnostic report—they may
need to get this from the PCP
Parents can expect the school to set up an evaluation
or diagnostic placement for the child
The school may create an Individualized Education Plan
(IEP) using the educational classification of “autism” or
a 504 plan that specifies accommodations for the child
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Services Schools May Provide
• Self-contained classroom
• Child may attend a regular classroom with special
education support and/or a one-on-one paraprofessional
• Resource room support
• Therapeutic services (speech, OT, PT, etc.)
• Social skills services
• Behavioral supports / behavior plan
• Counseling services with social worker or school
psychologist
• Accommodations for homework / assignments
• Vocational services / assistance
Services are provided based upon educational necessity
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Overview of Therapeutic Approaches
• Applied Behavioral Analysis (ABA)-based:
– Discrete Trial Training (DTT) (adult-directed)
– Pivotal Response Treatment (PRT) (child-directed)
– Picture Exchange Communication System (PECS)
• Relationship-based:
– Floortime / Difference Relationship Model (DIR)
– Relationship Development Intervention (RDI)
– Social Communication / Emotion Regulation / Transactional
Supports (SCERTS)
• Incorporates components of PRT, TEACCH, Floortime, and
RDI
• TEACCH / Structured teaching
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Families May Request…
• A letter to establish Medicaid eligibility or other disability
services
• A letter to support the establishment of or increase in
school-based services
• Referral / Prescription for outpatient evaluation and services
– Therapy (OT, PT, speech)
– Behavioral health (outpatient and/or in-home services)
– Additional evaluations
• Recommendations for / Referral to community-based
services
• Assessment of the child’s need for medication
• Insight regarding:
– Specialized diets
– Nutritional supplements
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Ongoing Role for PCP
• Include feedback from others (teachers, families)
• Maintain medical record
• Use a care team, including others who provide services to
the child
• Continue monitoring health and development
• Note changes in school performance, peer relationships,
and behavior and share notes with other providers
• Make specialist referrals as needed
• Coordinate with specialists
• Connect family to family support options
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What is Care Coordination?
• A patient- and family-centered,
assessment-driven, team-based activity
designed to meet the needs of children and
Youth while enhancing the care giving
capabilities of families
• Care coordination addresses interrelated
medical, social, developmental, behavioral,
educational, and financial needs to achieve
optimal health and wellness outcomes.
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What is a Medical Home?
• A community-based primary care setting
which provides and coordinates highquality, planned, family-centered health
promotion, acute illness care, and
chronic condition management.
• This setting provides an excellent
starting point for connecting children and
families to the larger arena of health and
community services
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Family Support Options
CT Child Development Infoline 211
or 800.505.7000
• Local Special Education Department (children > 3)
• CT Medical Home Initiative (5 statewide regions)
www.ct.gov ; search “Autism” to find region.
• CT Family Support Network (CTFSN): www.ctfsn.org ;
1.877.376.2329
• Department of Developmental Services (DDS) / Division
of Autism Services: www.ct.gov/dds/ ; 860.418.6078
• Autism Services & Resources Connecticut (ASRC):
www.autismconnecticut.org ; 1.888.453.4975
• Autism Speaks: www.autismspeaks.org ;
1.888.288.4762
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Resources (cont)
• CT Department of Public Health-Medical Home
Initiative
– South West Region-Stamford Hospital 1-866-239-3907
– South Central Region – Family Centered Services of
CT 1-877-624-2601
– Eastern Region- United community and Family Service,
Inc– 1-866-923-8237
– North Central Region- Connecticut Children’s Medical
Center-1-877-835-5768
– North West Region-ST Mary’s Hospital-1-866-517-4388
• Education Materials available upon request from
the Special Kids Support Center:
• Contact us: 1-877-835-5768
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Resources at CTAAP
• “Connecticut Guidelines for a
Clinical Diagnosis of Autism
Spectrum Disorder”
• “Connecticut Collaborative to
Improve Services for Children and
Youth with Autism Spectrum
Disorder”
• Referral letter
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Web Resources
• http://www.gaaap.org/HCS&Survei
llance.htm
• AAP coding fact sheet:
http://coding.aap.org/content.aspx
?aid=10423
• http://www.gaaap.org/HSC&Survei
llance/aap.coding%20fact%20shee
t.6.17.08.pdf
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