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