Research Proposal on Early Intervention

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					A Proposal for Early Screening
      practices for ASD
   Rebecca Landa, Ph.D., CCC-SLP
  Katherine Holman, Ph.D., CCC-SLP
  KKI Center for Autism and Related
         Outline for Presentation
   The importance of studying early symptoms of
   Early symptoms associated with a diagnosis of
   Common screening tools for ASDs
   Suggested steps for EHS programs to implement a
    screening process for young children with ASDs
    while strengthening collaborative relationships
    with EI providers in the community
               ASD Umbrella
          Autism Spectrum Disorders

         PDD-NOS               CDD
Asperger’s Syndrome             Rett’s Syndrome
             Facts about Autism
   Autism is a brain-based disorder, onset prenatal
   Involves abnormalities in:
    – Qualitative aspects of social development
    – Qualitative aspects of communication development
    – Repetitive, stereotyped patterns of behavior & interests
   Affects 4 males to 1 female
   Prevalence for autism is ~1/500; prevalence for
    ASD is ~1/250
            Facts about Autism
   Onset <36 months
   Some have regression before 24 m.
   Diagnosed based on presence of symptoms (no
    medical test, no medical cure)
   Numerous comorbid disorders (mood, anxiety,
    attention, OC, MR)
   Educational/behavioral tx leads to improvement,
    sometimes enormous effects
   Pharmacologic tx helps with some sxs
         Facts about Autism
 Most cases have no known cause
 Most cases probably heritable
 If have a child with autism, ~8% risk for
  autism in later-born children
 20-40% of siblings of a child with autism
  have language and/or social deficits
     Rationale for Studying Early
         Markers for Autism
   Parents report first concerns around 18 m.
   Parents often say babies not ‘normal’ even before
    first concern
   Retrospective studies indicate abnormalities
    present by 12 months of age in some cases
   Brain abnormality as early as prenatal life
   Early intervention may have great benefit
   86% of 2 year olds with ASD are on the spectrum
    at 9 years of age
   Most cases are diagnosed after 3 years of age
Challenges to Early Identification
 Absence of standardized diagnostic tools for
  children under 24 months
 Absence of diagnostic criteria for children
  under 24 months
 Physician time with child is brief
 Children often have normal appearance
 Physicians not trained in infant
  development (wait & see)
                  Our Program
   Early Detection of ASD Research
    –   Early markers
    –   Differentiate from LI
    –   Efficacy of screening instruments
    –   Training of professionals
    –   Monitor through period of regressions,
        vaccines, sensitive periods for brain
        development of certain regions
       Our Program (Continued)
   Early Intervention for ASD Research
    – Classroom for toddlers with ASD
    – Parent training
    – Parent sharing
 Early Detection and Early Intervention
 Clinical assessment and intervention
      Infants without autism…
 Come into the world with certain abilities
  (face preference, imitation, motor
  synchrony, informative cries, regularities in
  biological functioning)
 Change in predictable ways over the first
  year of life
 Are communicative before they are
 Social in nature
          Insights into the Early
          Manifestation of ASD
   Interpersonal synchrony*
   Monitoring the attention of others*
   Motivated to initiate social engagement (except
    around special interests)*
   Social interaction hard to sustain*
   Ability to integrate
   Special interests
   Babbling*
   First words
   *=may see before first birthday
    Early Manifestation of ASD
 Play – imagination
 Poor integration of gaze, smile,
 Impoverished gesture repertoire
 Limited range of facial expression*
 Repetitive behavior, sensory interests*
 Possible atypical motor features at 6 m*
    Development of ASD in infants
 Looks different from child to child (cog)
 Social is always impaired
 Social, language, motor change or slowing
  between 14 and 24 months for many of the
 Implications of delays at 14 months of age
 Implications of ASD symptoms at 14
  months with intact IQ
    Characterization of Early ASD
   Strengths are present
   Low rate of occurrence of expected skills
    (social, language)
   Presence of atypical features
    Strengths at 14-24 Months
 Play with toys
 Initiation of communication
 Some imitation, oddly manifested
 May follow pointing gestures, but not know
  what to do when get to the object
 Positive affect in solitary play
 Attachment
 Some intact social smiling
 May give eye contact during requests for
  objects, not much eye contact during
 Enjoy rough and tumble play
       Predictors of outcome
 IQ
 Social (more imitative, better joint
 Verbal ability
 Severity and number of Autism symptoms
    Developmental Trajectory
       Different for ASD
 Motor
 Language*
 Pervasive Developmental Disorder
  Screening Test
 CSBS Caregiver Questionnaire
 Screening Tool for Autism in Two-Year-
  Olds (STAT)
 Autism Behavior Checklist
 Autism Behavior Checklist (ABC)
        Our Proposed Practice:
         Three Components
1)   Training of Early Head Start Staff on the
     early signs of ASD and the importance of
     Early Intervention
2)   EHS providers give the MCHAT to all
     children from 18 to 36 months of age
3)   Develop a stronger collaborative network
     between EHS staff and EI providers
Target I: Training of Early Head
           Start Staff
   Potential Training Targets (3):
    1) What are autism spectrum disorders (ASD)

    2) Early Screening and Diagnosis of ASDs,
      Sharing information with families, and How
      to make a referral

    3) Basic strategies for working with a child
      with an ASD in your classroom
Training of Early Head Start
What are autism spectrum disorders (ASD)
– What is autism: what are the causes and the
  different symptoms associated with the
– What does autism look like in children under 3
  years of age: early signs and symptoms
– How is autism similar and different from other
  developmental disorders
 Training of Early Head Start
Early Screening and Diagnosis of ASDs
– What are the early signs of ASD
– Why is early diagnosis important
– How to screen for autism at an early age: appropriate
  screeners (MCHAT)
– Effective ways to collaborate and share information
  with families about the screening, possible need for
  referral, and benefits of beginning intervention early
– How to make an appropriate referral for a child who
  fails a screening
 Training of Early Head Start
Basic strategies for working with a child with
  an ASD in your classroom
-How to structure the environment to increase
  learning success in young children with ASD
-Functional ways to facilitate play, language, and
  social development
-How to collaborate with caregivers, daycare
  providers and other EI providers to develop
  consistent and effective daily routines and
  strategies across environments
Target II: Screening of ASDs for
   all children 18-30 months
   Give MCHAT to all children in EHS who are
    between 18-30 mos
   Talk with caregivers about the screening process,
    the results of the screening, and the next steps—
    the importance of following up with an autism
    expert from EI for a full developmental evaluation
    and possibly early intervention
   Work closely with EI and caregivers to develop an
    effective plan of action for the child
    Screening Tools vs. Diagnostic
   Screening by itself does not provide a
    diagnosis, but is the first key step in the
    diagnostic process. Therefore, it is
    important for health care providers to
    immediately refer those flagged as "at risk"
    during screening to diagnostic specialists
    for more extensive diagnostic evaluation
    and referral for appropriate intervention.
     Target II: Steps in screening
1)   EHS staff gives MCHAT to children between
     18-30 months
2)   EI provider from local program scores MCHAT
     and discusses results with EHS staff
3)   EHS (and possibly) EI staff arrange meeting
     with caregiver to discuss results and make
     appointment for dev. evaluations
4)   EHS and EI staff work together with family to
     develop early intervention plan for child who is
     showing ASD symptoms
    Importance of Early Screening
 Increase in prevalence of ASDs
 Emerging ability to recognize ASD
  symptoms in toddlers
 Increasing evidence that early, intensive
  treatment for children with autism has a
  significant impact on outcome
 Answers questions and provides potential
  solutions to challenges staff and family may
  have had with the child
    Target III: Improve collaborative
relationship: EHS and Local EI providers
-Information is the key: information sharing
  meetings of how each organization works to
  serve young children and their families in
  the community
-Develop an effective referral process and
  ongoing communication opportunities
-Develop collaborative ways to mutually
  support the family and work with the child
  with an ASD
            Impact on Families
   If the child is provisionally identified as
    having characteristics of ASD
    – EHS staff who are trained in this model can
      help families to:
       » Understand their child
       » Improve their ability to understand their child’s
       » Give them more effective ways of interacting and
         relating to their child
       » Help with behavioral management issues
    Barriers and proposed supports
   Families with lower SES backgrounds
    gaining access to local EI services
    Families who are already connected with EHS
    EHS will screen children for possible ASDs
     (and) other developmental disorders
    EHS staff, who knows child and family well,
     will coordinate and collaborate with EI service
     providers to maximize potential EI
    Barriers and proposed supports
   Time and cost of training EHS staff and
    collaborating with EI providers
     Mandated under Children’s Health Act of 2000 to
      screen earlier
     Overall time and cost from the outset will definitely
      outweigh risks associated with children not being
      identified and therefore not receiving appropriate EI
        Classroom disruption, family/caregiver and teacher’s
         frustration, child’s declining behaviors and skills, etc.
    Need for Early Intervention
 Critical periods of brain development
 Capitalize on neuroplasticity
 Basic social impairments may result in quite
  different kinds and amounts of social
  experience for autistic people starting early
  in childhood. The lack of this 'expected'
  input may play a role in brain organization.
      Benefit of EI: Evidence
 Mostly from children >3 years of age
 Early intensive intervention: improve IQ by
  average of 20 points
 Children who start tx earlier tend to fare
 EI associated with reduced need later for
  special education services
 More children are acquiring language
           Early Intervention
 Beginning by 24 months is critical
 Parent training
 Systematic instruction in the home and in an
  educational setting
 1:1 as well as group work necessary
 Reconsider ‘least restrictive environment’ –
  cannot consider classroom as restrictive if it
  leads to gains in language, social, self reg
   Goals: play (object knowledge, social, scripts,
    language, symbol); functional communication;
    social (face recognition, imitation, joint attention);
    cognitive; self regulation
   Methods: continuum of structure; environmental
    engineering; visual assists
   Developmental considerations
   Family and community training/involvement
   Setting: home, community (parent-child groups
    with typical children), educational
            Research on EI
 Very little on kids under 3 yo.
 What to teach/how to teach
 No focus on individual differences
 Small n’s, single subject design
 Different approaches show benefit to
 All approaches have ‘non-responders’
            Our To Do List
 Develop better screeners for ASD
 Increase awareness of primary care
 Increase detection knowledge of EI staff
 More research on early markers
 Treatment research (what to teach, how to
  teach, individual differences)
 Increase EI programs
 Use what we have now to start screening
 If parent is concerned, refer
 If initial assessment suggests hint of ASD,
  refer to autism infant expert
 Monitor development of all children with
  social or language delays
 Monitor development of all sibs of autism
 We know enough to get started now
 Early Detection and Early Intervention
  Conference June 7-9; Baltimore
 To refer children with few words before 24
  months, toddlers with ASD, babies with no
  family history of autism, babies having a
  sibling with autism, call toll free 1-877-850-
                  Thank you
   NIMH
   NAAR
   CAN, Coalition for Autism
   Pathfinders for Autism
   Families of participants
   Research team: Julie Cleary, Kate Brooks,
    Kathryn Gleeson, Kirsten McGowan, Erica Gee,
    Andrea Schanbacher, Michelle Sullivan, Cornelia
    Taylor, Andrea Gollogher, Kay Holman, Sharon
    Loza, Kelley Duff, Juhi Pandey, Rachel Pletcher

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