understanding autism in the context of screening: where do we go from here? ann m. mastergeorge...
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Understanding Autism in the Context of
Screening: Where Do We Go From
Here?Ann M. Mastergeorge
CIHS/First5 Special Needs Project Consultant
UC Davis/M.I.N.D. Institute
Overview and Objectives
1. To identify typical development and atypical early indicators of concern for autism-risk.
2. To understand best practice guidelines for screening for at-risk behaviors/autism.
3. To establish rapport and trust with families in the screening process.
4. To develop consistent referral pathways for children with autism risk in screening.
Overview and Objectives1. To identify typical
development and atypical early indicators of concern for autism-risk
2. To understand best practice guidelines for screening for at-risk behaviors/autism.
3. To establish rapport and trust with families in the screening process.
4. To develop consistent referral pathways for children with autism risk in screening.
Key Developmental Milestones
First Signs, Inc. (2004) Key Social, Emotional, and Communication Milestones for Your Baby’s Healthy Development
4 MONTHS
6 MONTHS
Follow and react to bright colors, movement, objects
Turn toward sounds Show interest in
faces Reciprocal smiling
Relates to others with joy
Smile often Coos or babbles
when happy Cries when unhappy
Key Developmental Milestones
9 MONTHS
12 MONTHS
Smile/laugh while looking at you
Exchange back and forth sounds
Exchange back and forth gestures: give, take, reach
Use repeated gestures (give, show, reach, wave, point)
Play peek-a-boo, patty cake, other social games
Making sounds and single word approximations
Turn to person when his/her name is called
Key Developmental Milestones
15 MONTHS Many back-and-forth smiles, sounds, gestures
Uses pointing or “showing” gestures to gain attention to something of interest
Uses different sounds to get needs met and draw attention to interests
Use and understand at least three words (“mama”;”dada”; “bye-bye”; “bottle”
Key Developmental Milestones
18 MONTHS Use lots of gestures with words (e.g. pointing and says “want juice”
Use lots of consonant sounds in single word approximations/words
Uses and understands at least 10 words
Shows/knows the names of familiar people or body parts
Engage in simple pretend play (feeding a doll, putting doll to sleep)
Key Developmental Milestones
24 MONTHS Pretend play with more than one action (feed doll and put doll to sleep)
Use and understand at least 50 words
Use at least two words together (without imitation and repetition) and in a way that makes sense (e.g., “want juice”)
Enjoy being next to children of same age, show interest in playing with them, giving toy to another child
Look for familiar objects out of sight (when asked)
Key Developmental Milestones
36 MONTHS Enjoys pretend play (play different characters talking for dolls or action figures
Enjoys playing with children same age
Using language to convey thoughts and actions (“sleepy, go take nap”)
Answer “what,”; “where”, and “who” questions easily
Talks about interests and feelings about the past and future
Common Presenting Features of Autism Spectrum
Disorders From First Signs, Inc. (2004) Key Social, Emotional, and
Communication Milestones for Your Baby’s Healthy Development
Unusual Stereotypic Behaviors
Sensory Aversions
Physiological Concerns
Other Concerns
Unusual Stereotypic Behaviors
Little or no eye contact Does not respond to name Has a language delay Does not share interest in
object or activity with a preferred adult
Displays rigidity and gets stuck on certain activities
Expresses insistence on sameness and resistance to change
Inappropriate play or behavior demonstrated
Tantrums easily Unusual motor behaviors
or motor planning Odd hand and finger
mannerisms
Lines up toys or objects in obsessive manner
Lacks ability to play with toys
Prefers to be alone Likes to spin self or
objects Uses repetitive words or
phrases (echolalia) Displays self-injurious
behaviors Acts as if deaf Lacks normal fear Displays and flapping
and/or toy walking Rocks or bangs head Arches back
Sensory Aversions
Over-or-under reactive sensory input – touch, sound, taste, sight, hearing
Over-arousal and regulatory issues
Difficulty processing sensory information
Physiological Concerns
Large head circumference
Regression or loss of skills
Low muscle tone Frequent ear
infections Difficulty sleeping
or unusual sleep patterns
Dysmorphic features
Frequent gastrointestinal issues (reflux, stomach pains, diarrhea, constipation)
Very picky or unusual eating habits
Rigid preference for certain foods (dairy, gluten)
Other co-morbid disorders (mental retardation, seizures, hyperactivity, immune dysfunction, anxiety, depression, OCD, etc.)
Other Concerns
Sibling of a child with autism spectrum disorder
Familial presence of other warning signs
The Basics of Autism
Onset during first 3 years of life Chronic lifelong course Male:female ratio = 4:1 Underlying neurological
dysfunction Genetic factors in etiology Spectrum of severity
Spectrum of Autism Severity Kanner’s Description
– Leo Kanner (1943) classic paper– Description of 11 children with previously
undescribed syndrome Characteristics
• Inability to relate to others• Failure to use language to convey meaning• Obsessive desire for the maintenance of
sameness• Anxiety• Congenital onset• Co-morbidity
Observations to empirical support
Increasing Prevalence
Autism, strictly defined– 4-6 in 10,000 prior to 1980’s (Lotter
1967)
– 16-20 in 10,000 today (Chakrabarti & Fombonne 2001)
Autism spectrum disorders– 10 in 10,000 in 1990’s (Bryson et al 1988)
– 60-70 in 10,000 today (Chakrabarti & Fombonne 2001)
Clinical Features Five specific spectrum
diagnoses used by DSM-IV:– Autistic disorder– Asperger disorder– Rett disorder– Childhood disintegrative disorder– Pervasive developmental disorder-
NOS
The Autism Spectrum
Milder disorders– Asperger syndrome
• Fewer symptoms, no language delay– Pervasive Developmental Disorder-NOS
Sub-clinical manifestations– The broader autism phenotype in family
members• Language delay• Shyness, social reticence• Rigidity, focused interests
DSM-IV Core Characteristics: Criteria for Autistic Disorder
Deficits in reciprocal social interaction
Impairments in verbal and nonverbal communication
Restricted, repetitive or stereotyped behaviors and interests
Meeting Criteria For Autism
Individual must demonstrate at least 6 of the 12 symptoms
– At least 2 symptoms from the social domain
– At least 1 symptom from communication domain
– At least 1 symptom from the restricted behaviors/interest domain
– At least 1 symptom must have been present before 36 months of age
DSM-IV Social Symptoms
Failure to use nonverbal behaviors to regulate social interaction– Eye contact, facial expression, gesture,
intonation, posture
Impairments in peer relationships
Lack of sharing interests and attention with others
Limited social-emotional reciprocity
DSM-IV Communication Symptoms
Delay in or total lack of development of language
Unusual language– Echolalia, neologisms, pedantic
speech
Poor reciprocity, turn-taking in conversation
Limited pretend play and imitation
DSM-IV Stereotyped/Repetitive
Behavior Symptoms Circumscribed interests-narrow
in focus Insistence on sameness,
nonfunctional rituals and familiar routines
Unusual motor behavior/mannerisms
Odd toy and object use, focus on sensory features; preoccupation with parts of objects
Since Kanner: What Do We Know?
Autism is a Spectrum Disorder Autism Spectrum Disorders are
Not Rare Autism is a Developmental
Disorder Autism is a
Neurodevelopmental Disorder with a Biological Basis
Autism Can be Identified Early
Autism is a Spectrum Disorder
Range of potential manifestations• addition to DSM-IV Asperger syndrome
diagnosis• Individuals with normal intelligence
without marked impairments in structural language
• Individuals with severe mental retardation with autism
Complex diagnostic features and range of manifestations
Autism Spectrum Disorders Are Not Rare
Increase in prevalence– 3-4 times higher than
suggested in 1970s– 1.5 times higher than
thought in 1980s and 1990s– Proposed explanations:
• Better identification• Sensitive diagnostic tools• Broader classification systems• Environmental factors
Autism is a Developmental
Disorder Accurate diagnosis of autism
required significant knowledge of typical development in the following areas: social, communication, cognitive skills, and play skills.
Understanding developmental profiles: must know what is typical for development and atypical for development at any age.
Autism is a Neurodevelopmental Disorder
with a Biological Basis Genetic factors
• Recurrence risk for autism after the birth of one child with disorder is 3-6%
• Concordance rate for autism in monozygotic twins is 60% (and up to 90% when social and communication abnormalities included)
• Genome projects and molecular genetic studies
Broader Phenotype factors Organic Brain Disorder
• fMRI, MRI studies demonstrate: increased head circumference, brain volume, brain region deficits
Autism Can Be Identified Early Most common initial symptom
reported by parents is delayed (or abnormal) speech development
Social-communicative abnormalities in the first and second year of life:
• Eye contact• Social referencing• Imitation• Orientation to name• Shared attention and affect
Early recognition and identification of autism-->early behavioral markers of autism
Overview and Objectives
1. To identify typical development and atypical early indicators of concern for autism-risk
2. To understand best practice guidelines for screening for at-risk behaviors/autism.
3. To establish rapport and trust with families in the screening process.
4. To develop consistent referral pathways for children with autism risk in screening.
Key Screening Questions How can sensitive information be
shared with families when concerns arise during the screening process?
What are ways to remain supportive and family-centered throughout the screening, child study team, referral and linkage process?
What strategies, techniques and tools are available as resources?
Decision Tree Areas of Focus
Screening Results Screening results are
consistent with typical development. No signs of developmental delays or risk factors identified.
Screening results are consistent with typical development; however, presence of risk factors.
Screening results indicate a possible delay or disorder. Risk factors may be identified.
Routine monitoring
Referral for services and supports & heightened monitoring
Assessment, referral for services and supports as needed, & heightened monitoring
Building on What We Know: The Critical Role of the Screener
Introduces the family to the Special Needs Project
Establishes a relationship with the family
Gathers information about the family
Opens the door to services and supports
Sets the tone for follow-up and follow through on recommendations
Best Practices for the Process
Work with families during screening
Inform families about the screening results
Work with families to decide on possible services
Support families in accessing services
Link families to services
Best Practices (cont.) Follow up to see if services were accessed
Provide ongoing support throughout the services
Support the family in coping with identified concern
Monitor services for the child
Monitor and assess the need for additional services
Integrating Infant Family & Early Mental Health
Approaches Relationship-based approach to
services. Strength-based approaches to
services. Parallel process: modeling a
supportive relationship. Reflection with the family.
“ Parents and other regular caregivers in children’s lives are “active ingredients” of environmental influence during the early childhood period. Children grow and thrive in the context of close and dependable relationships that provide love and nurturance, security, responsive interaction, and encouragement for exploration. Without at least one such relationship, development is disrupted and the consequences can be severe and long lasting. If provided or restored, however, a sensitive caregiving relationship can foster remarkable recovery”From Neurons to Neighborhoods, National Research Council and Institute of Medicine (2000, p.7).
Integrating Infant Family & Early Mental Health Approaches (con’t)
Infant mental health encompasses a continuum of approaches in working with young children and their families.
Pyramid of three approaches:– Promotion of healthy social and
emotional development– Prevention-intervention of mental
health difficulties– Treatment of mental health conditions in
the context of their families
Pyramid Promoting Healthy Social and Emotional Development
Treatment
Prevention-Intervention
Promotion
Promotion of Healthy Social and Emotional Development
Provide information about social-emotional development in the context of caregiving relationships.
Disseminate information about early foundations for school readiness and apply examples to their children.
Talk routinely about social and emotional milestones as part of developmental anticipatory guidance.
Integrate infant mental health concepts into trainings for personnel working with young children and their families.
Prevention-Intervention Screening and assessment of social and emotional
development as part of early identification process
Carefully listening to families to help them identify, clarify, and address issues that may be affecting the developing relationship with their child.
Working with community mental health and public health providers when there is concern.
Assisting parents/caregivers to understand and respond sensitively to the cues the child gives.
Supporting families as they increase their coping skills and build resilience in their children.
Consulting with parents through relationship-based practice to promote the parent-child relationship.
Treatment Assisting eligible children to access
mental health providers for appropriate diagnostic treatment services within the family context.
Maintaining collaborative relationship between the parent/caregiver.
Creating or adapting models for cross-disciplinary work between mental health and early intervention providers.
Overview and Objectives
1. To identify typical development and atypical early indicators of concern for autism-risk
2. To understand best practice guidelines for screening for at-risk behaviors/autism.
3. To establish rapport and trust with families in the screening process.
4. To develop consistent referral pathways for children with autism risk in screening.
Collaboration with Families
Infant mental health defined as developing in the context of family:
“the developing capacity of the child from birth to age 3 to experience, regulate and express emotions; form close and secure interpersonal relationships; and explore the environment and learn--all in the context of family, community, and cultural expectations for young children. Infant mental health is synonymous with healthy social and emotional development.” (From ZERO TO THREE)
Family/Professional Collaboration
Shared goals: promotes relationship in which family members and professionals work together to ensure quality services for child and family.
Mutual respect: recognizes and respects knowledge, skills and experience that families and professionals bring to the relationship.
Trust: development of trust is an integral part of a collaborative relationship.
Open communication: facilitates open communication so families and professionals can feel free to express themselves.
Culturally sensitive: creates an atmosphere in which cultural traditions, values and diversity of families are acknowledged and honored.
Negotiation: essential in a collaborative relationship.
Mutual commitment: brings mutual commitment of families, professionals, and communities to meet the needs of children.Bishop, K. (1993). Family/professional collaboration for Children with special health needs and their families.
Family/Professional Collaboration
Shared Partnership
“If we are to be successful with families,we are going to need to re-orient as professionals. We are going to need to look to parents as leaders, parents as the experts, parents as the bosses. We are going to need to ask them to join us cooperatively as equals in this partnership so that we create a reality that matches what all of us want to see.”
Collaboration with Families
Effective skills and strategies:– Building relationships– Meeting with infant/child and parent
together– Sharing observation of infant’s/child’s
growth and development– Helping the parent find pleasure in the
relationship with the infant/child– Allowing the parent to take the lead in
the discussion– Identifying capacities that parent brings
to care of infant/child– Remaining open, curious, and reflective
Overview and Objectives
1. To identify typical development and atypical early indicators of concern for autism-risk
2. To understand best practice guidelines for screening for at-risk behaviors/autism.
3. To establish rapport and trust with families in the screening process.
4. To develop consistent referral pathways for children with autism risk in screening.
Core Concepts that Guide Screening, Diagnosis and Assessment in Autism
DSM-IV is current classification standard for establishing diagnosis of ASD.
Early identification is essential for early therapeutic intervention and leads to a higher quality of life for family and child.
Informed clinical judgment is a required element of a screening, diagnostic and assessment process.
Accurate screening and assessment requires collaboration and problem solving among professionals, service agencies and families.
Core Concepts that Guide Screening, Diagnosis and Assessment in Autism An interdisciplinary process is the recommended
means for developing a coherent and inclusive profile for an individual at risk for or diagnosed with ASD.
From screening through intervention planning, the evaluation process must be family-centered and culturally sensitive.
From time of screening--timely referral and coordination of evaluation and ongoing assessment enhances outcome.
Rapid developments in the field require regular review of current best practice procedures and up-to-date training.
Best Practice for Screening for ASD
Autism can be identified in very young children.
Screening for ASD should be conducted in conjunction with routine developmental surveillance.
Because parents are the experts regarding their children, eliciting and valuing parental concerns is imperative.
Screening Instruments for ASD
Screening tools specific to ASD:
– The Checklist for Autism in Toddlers (CHAT)
– The Modified Checklist for Autism in Toddlers (M-CHAT)
– The Screening Tool for Autism in Two-Year-Olds (STAT)
– The Stage 2-Pervasive Developmental Disorders Screening Test (PDDST-II)
Screening Exemplar: M-CHAT M-CHAT (Robins et al., 2001) is 23-item
checklist designed as a screen fro ASD at 24 months of age.
Form consists of yes/no format that parents fill out.
Spanish translation available.
Demonstrated validity in identifying the majority of children with ASD and developmental delay at 24 months.
Screening Exemplar: M-CHAT Sample items from M-CHAT
– Does your child look at your face to check your reaction when faced with something unfamiliar?
– Does your child ever use his/her index finger to point, to indicate interest in something?
– Does your child ever bring objects over to you (parent) to show you something?
– Does your child respond to his/her name when you call?
Autism Can Be Identified Early In Very Young Children
Advances made in identifying behavioral indicators as well as atypical development in children less than 2 years of age who are later diagnosed with ASD.
Recent focus on developmental precursors of communication, language and social development in the first two years of life
Children at risk for autism generally have failures of joint attention, nonverbal and preverbal communication, social reciprocity, affective understanding, and imitation.
ASD Screening in Conjunction with Routine Developmental
Surveillance Best practices recommend that all children be
screened specifically for ASD at ages 18 and 24 months.
Clinical signs or “red flags” exist that can help identify children at risk for delay and/or ASD. Indicators include:– No babbling by 12 months of age– No back and forth gestures such as pointing,
showing, reaching, waving by 12 months– No words by 16 months– No two-word meaningful phrases (does not include
imitation or repetition) by 24 months– ANY loss of speech, babbling or social social skills at
ANY age.
Elicit and Value Parental Concerns
All professional encounters with young children should be viewed as an opportunity to elicit developmental information.
Advantages (Glascoe, 1999):
– Concerns are easy to elicit– Inquiry is brief– Does not involve challenge of eliciting skills
from young children– Provides family-centered approach to
addressing problems– Can facilitate a wide range of options
including parenting education, reassurance, referral, or further screening or developmental testing
Roles of Early Identification and Screening for Referral
Primary care physician– Developmental surveillance– Screening practices (e.g., M-CHAT)
Role of Regional Centers and public schools– Early Start (funded by IDEA, Part C and
California state funds)– Regional Centers – Local Education Agencies (LEAs)
Role of other Professionals– Aware of common “red flag” indicators of
ASD– Know appropriate referral sources
Role of California’s Regional Centers and Public Schools
California Early Start criteria: receive services if meet at least one of the following criteria
(1) Developmental delay in either cognitive, communication, social or emotional, adaptive or physical and motor development, including vision and hearing; OR
(2) Established risk conditions of known etiology, with a high probability of
resulting in delayed development; OR
(3) At risk of having a substantial developmental disability due to a
combination of risk factors
Role of California’s Regional Centers and Public Schools
Early Start : mandates that regional centers and public schools’ local education agencies (LEAs) together create “child-find” to locate infants and toddlers eligible for early intervention.
Regional Centers: offer screening services to public to find children who qualify. Screening instruments designed for detecting symptoms of ASD, and “red flags” for atypical behaviors
Local Education Agencies: responsible for infants and toddlers with low-incidence disabilities
Family Resource Centers: provide parent support, information and referrals
Referral of Child with Possible ASD
Confusion surrounding referral process--major barrier to screening: – Need resource directory, contacts for
individuals and teams, referral process explanation, etc.
Next Steps:– Conveying information to families– Supporting Documentation for referral
Where to Refer:– California Medical Centers Regional Centers
(demonstrated expertise)– School Districts
Contact Information
http://hcd.ucdavis.edu/faculty/mastergeorge/
mastergeorge.html
www.mindinstitute.org
Website Resources: General Development
www.zerotothree.orgwww.bornlearning.orgwww.ccfc.ca.govwww.cde.ca.govwww.preschoolcalifornia.orgwww.caeyc.orgwww.childcareexchange.comwww.nccp.orgwww.californiatomorrow.org
Website Resources: Autism
http://www.first5caspecialneeds.org
http://www.f5ca.org
www.firstsigns.org (Healthy development,concerns, screening and referral process, early intervention for ASD)
www.autism-society.org
www.autism.org/contents.html (Center for the Study of Autism)
www.autism.com/ari (Autism Research Institute)
www.autism-resources.com
www.Autism.tvWebsite