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Understanding Autism in the Context of Screening:

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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 – PowerPoint PPT presentation

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Title: Understanding Autism in the Context of Screening:


1
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
2
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.

3
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.

4
Key Developmental MilestonesFirst Signs, Inc.
(2004) Key Social, Emotional, and Communication
Milestones for Your Babys 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

5
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

6
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
    (mamadada bye-bye bottle

7
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)

8
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)

9
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

10
Common Presenting Features of Autism Spectrum
Disorders From First Signs, Inc. (2004) Key
Social, Emotional, and Communication Milestones
for Your Babys Healthy Development
  • Unusual Stereotypic Behaviors
  • Sensory Aversions
  • Physiological Concerns
  • Other Concerns

11
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

12
Sensory Aversions
  • Over-or-under reactive sensory input
  • touch, sound, taste, sight, hearing
  • Over-arousal and regulatory issues
  • Difficulty processing sensory information

13
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.)

14
Other Concerns
  • Sibling of a child with autism spectrum disorder
  • Familial presence of other warning signs

15
The Basics of Autism
  • Onset during first 3 years of life
  • Chronic lifelong course
  • Malefemale ratio 41
  • Underlying neurological dysfunction
  • Genetic factors in etiology
  • Spectrum of severity

16
Spectrum of Autism Severity
  • Kanners 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

17
Increasing Prevalence
  • Autism, strictly defined
  • 4-6 in 10,000 prior to 1980s (Lotter 1967)
  • 16-20 in 10,000 today (Chakrabarti Fombonne
    2001)
  • Autism spectrum disorders
  • 10 in 10,000 in 1990s (Bryson et al 1988)
  • 60-70 in 10,000 today (Chakrabarti Fombonne
    2001)

18
Clinical Features
  • Five specific spectrum diagnoses used by DSM-IV
  • Autistic disorder
  • Asperger disorder
  • Rett disorder
  • Childhood disintegrative disorder
  • Pervasive developmental disorder-NOS

19
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

20
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

21
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

22
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

23
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

24
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

25
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

26
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

27
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

28
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.

29
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

30
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--gtearly behavioral markers of autism

31
Overview and Objectives
  • 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.

32
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?

33
Decision Tree Areas of Focus
34
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

35
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

36
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

37
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

38
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.

39
  • Parents and other regular caregivers in
    childrens 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).

40
Integrating Infant Family Early Mental Health
Approaches (cont)
  • 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

41
Pyramid Promoting Healthy Social and Emotional
Development
Treatment
Prevention-Intervention
Promotion
42
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.

43
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.

44
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.

45
Overview and Objectives
  • 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.

46
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)

47
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.

48
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.

49
Collaboration with Families
  • Effective skills and strategies
  • Building relationships
  • Meeting with infant/child and parent together
  • Sharing observation of infants/childs 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

50
Overview and Objectives
  • 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.

51
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.

52
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.

53
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.

54
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)

55
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.

56
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?

57
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.

58
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.

59
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

60
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

61
Role of Californias Regional Centers and Public
Schools
  • California Early Start criteria receive services
    if meet at least one of the following criteria
  • 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

62
Role of Californias 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

63
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

64
Contact Information
  • ammastergeorge_at_ucdavis.edu
  • http//hcd.ucdavis.edu/faculty/mastergeorge/
  • mastergeorge.html
  • www.mindinstitute.org

65
Website Resources General Development
www.zerotothree.org www.bornlearning.org www.ccfc
.ca.gov www.cde.ca.gov www.preschoolcalifornia.org
www.caeyc.org www.childcareexchange.com www.nccp.
org www.californiatomorrow.org
66
Website Resources Autism
http//www.first5caspecialneeds.org http//www.f5c
a.org www.firstsigns.org (Healthy
development,concerns, screening and referral
process, early intervention for
ASD) www.autism-society.org www.autism.org/content
s.html (Center for the Study of
Autism) www.autism.com/ari (Autism Research
Institute) www.autism-resources.com www.Autism.tv
Website
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