A Model for a Lifetime of Support

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• A Model for a Lifetime of Support
• for Individuals on the Autism Spectrum and Their
  Families

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Goals for Today

• Learn why Mental Health Professions
  Pediatricians need to be experts in ASDs
• Review results of baby siblings retrospective
  studies
• Recognize early developmental markers of concern
• Learn how to administer the mCHAT
• Discuss appropriate work-up referrals

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Signs of Autism Why are we still missing the
diagnosis??and missing the opportunity for
early intervention

• Susan M. Stephens, MD
• Pediatrician

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SARRC

• Southwest Autism Research and Resource Center
• Phoenix, Arizona
• Serves the southwest, nation, and even world
• Founded by Denise Resnik and Dr. Raun Melmed
• Mission
• SARRC models and promotes best practices that
  enhance the quality of life for children and
  adults with autism spectrum disorders empowers
  children, families and professionals with
  information and training and advances
  discoveries that will ultimately lead to a cure

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Family Resources

• Children with Autism and their families
• New parent orientation
• JumpStart
• Hooked on play
• Hispanic outreach
• SARRC Community School
• More Than Words
• Speech and music therapy
• HabStart

• Second Gear
• Strategic planning support for parents
• Summer Fun
• Camp
• Grandparent volunteer group

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Community Resources Research and Assessment

• Education of the public and outreach
• Physician Outreach Program (POP)
• Training services
• FRIEND program
• Workshops
• Research Assessment
• Clinical trials
• Genetics research studies
• Family based studies
• SARRC database

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Early Identification of Developmental Disorders

• Integral function of primary care medical home
• Appropriate responsibility of pediatric health
  care professional
• Developmental Surveillance
• Recognize children at risk of developmental
  delays
• Incorporate into every child visit (well/sick)
• Screening via use of standardized tools
• Administered at 9-, 18-, and 30-month visits
• Autism-specific tool should be administered to
  all children at the 18-month visit
• Evaluation
• Identification of specific disorders
• AAP Policy Statement Pediatrics Vol. 118 No.1
  July 2006, pp.405-420

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Components of Developmental Surveillance

• Eliciting and Attending to Parents Concerns
• Maintaining a Developmental History
• Making Accurate and Informed Observations of the
  Child
• Identifying the Presence of Risk Protective
  Factors
• Documenting the Process and Findings
• AAP Policy Statement Pediatrics Vol. 118 No.1
  July 2006, pp.405-420

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Autism

• 3 Areas of Impairment

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Pervasive Developmental Disorders

• Autistic Disorder
• Pervasive Developmental Disorder not otherwise
  specified (PDD-NOS)
• Asperger Syndrome
• Rett Syndrome
• Childhood Disintegrative Disorder
• DSM IV Diagnostic Criteria

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Spectrum Disorder

• Symptoms change with age
• Core disorder - Autism
• Overlapping circles overlapping symptoms
• Continuum/Spectrum Disorder
• (Lord Risi, 2000)

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The Autism Epidemic?

• 1 in 150 (166) children affected by ASD
• Centers for Disease Control and Prevention
  (CDC). Prevalence of Autism Spectrum
  DisordersAutism and Developmental Disabilities
  Monitoring Network, 14 Sites , United States,
  2002. MMWR SS 200756(No.SS-1)
• Most prevalent developmental disorder in US
• 4 Male 1 Female
• 40 of children identified only by schools
• Black children, young mothers, less education
• Diagnostic Substitution Paul T. Shattuck
• Pediatrics 2006117(4)1028-1037
• Early screening identification

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Home Video Analyses

• 20 Published studies
• Most consistent findings
• Failure to orient to name
• Absence of social smile
• Not looking at others (especially faces)
• Diminished facial expression
• Motor stereotypies
• Appear to distinguish autism from other
  developmental delays
• Skilled examiners detect differences at 6 months
  of age and by 12 months, sibs with ASD can be
  clearly distinguished from other sibs low-risk
  controls

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Results of Baby Sibling Studies

• 30-50 of parents recall problems dating back to
  the first year
• One of two extremes of temperament
• Intense irritability, difficult to soothe
• Passive, content to be alone, too good
• Impaired communication
• Poor eye gaze, decreased babbling and affective
  expression, late speech
• Atypical social behaviors
• Lack of response to parents voice, social
  overtures
• Atypical sensorimotor behaviors
• Auditory tactile over- (or under-) sensitivity,
  feeding problems
• 70-80 of parents concerned by age 2
• Zwaigenbaum, Bryson, Rogers, et al. Behavioral
  Manifestations of Autism in the First Year of
  Life. Int. J. Devl Neuroscience 200523143-152

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Age of Diagnosis in Recent Studies
2000 Arizona data from median age of diagnosis
4 years, 5 months
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Autism

• 3 Areas of Impairment

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DSM IV Diagnostic Criteria6 or more

• Qualitative impairment in social interaction
• Qualitative impairments in communication
• Restrictive repetitive stereotyped patterns of
  behavior, interests, activities
• Delays or abnormal functioning in the following,
  with onset before the age of 3
• Social interaction
• Language as used in social communication
• Symbolic or imaginative play
• Symptoms not better accounted for by Retts
  Disorder or Childhood Disintegrative Disorder

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Diagnostic Criteria Qualitative Impairment in
Social Interaction2 or more

• Impairment in use of multiple nonverbal behaviors
• Eye-to-eye gaze, facial expression, body posture,
  gestures
• Failure to develop peer relationships
• Appropriate to developmental level
• Lack of spontaneous seeking to share
  enjoyment/interests/achievements
• Lack of showing, bringing, pointing
• Lack of social reciprocity

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Typical Developmental Milestones Social -
Communication Milestones

• 0 - 6 months
• Social smile
• Making noises when spoken to
• 6 months - 12 months
• Babbling
• Tries to communicate
• Social imitation
• 12 months - 18 months
• First words
• Understanding simple directions
• Pointing
• Interest in peers

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Diagnostic CriteriaQualitative Impairments in
Communication1 or more

• Delay in, or lack of development of spoken
  language
• Uncompensated by alternate modes of communication
• Impairment in ability to initiate or sustain a
  conversation
• In individuals with adequate speech
• Stereotyped repetitive use of language
• Idiosyncratic language
• Lack of varied, spontaneous play
• Make-believe or social imitative play,
  appropriate for age

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Communication

• Use of early forms of communication
• Eye contact
• Gestures
• Vocalizations
• Nonverbal
• Delayed communication
• Echolalic
• Immediate
• Delayed
• Unconventional communication

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Early Signs of Communication

• Joint attention and communication begins before
  birth
• Infants communicate from birth, expressing
  intentions emotions, by moving in expressive
  ways, and responding to people
• Early communication skills at 9 months of life
• Eye contact
• Orienting to name or pointing
• Social and nonverbal communication
• Vocalizations
• Gestures
• Colwyn Trevarthen, University of Edinburgh,
  Scotland, UK

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Diagnostic criteriaRestricted Repetitive
Stereotyped Patterns of Behavior, Interests
Activities1 or more

• Encompassing preoccupation with one or more
  stereotyped restricted patterns of interest
• Abnormal in intensity or focus
• Inflexible adherence to specific, nonfunctional
  routines or rituals
• Stereotyped repetitive motor mannerisms
• Hand or finger flapping, twisting, or complex
  whole-body movements
• Persistent preoccupation with parts of objects

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Behavior

• Obsession with objects, interests, or routines
  (Attachment to unusual objects)
• Unusual toy play
• Repetitive body movements
• Over or under sensitivity to sensory stimuli
• Inconsistent response to sound
• Unusual visual interests
• Insensitive to pain, cold, or heat
• Hypersensitive to taste

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Co-occurring Disorders

• Mental Retardation
• Tics
• Seizures
• Anxiety disorder
• Compulsions (OCD)
• ADHD
• Learning disabilities
• Self-injurious behaviors
• Visual or hearing impairment
• Tuberous Sclerosis / Fragile X

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Autistic Disorders Screening Kit

• The BHHS Legacy Foundation

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Autistic Disorders Screening Kit

• Have parent complete mCHAT questionnaire
• Conduct Developmental Surveillance
• Are there any concerns in your routine
  developmental surveillance?
• Do any of the developmental probes suggest a
  concern?
• Detect Red Flags
• Score the mCHAT questionnaire
• Put results together

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AUTISTIC DISORDERS (AD) SCREENING TOOLFor all
18-24 Month Well-Child Exams Provider Assessment
Sheet

• 1. Conduct Developmental Surveillance
• Are there any concerns in your routine
  developmental surveillance?
• If yes, see the flip side of this form for
  additional developmental probes,
• which can help you further survey a childs
  developmental profile.
• Do any of the developmental probes suggest a
  concern?
• Note Screening for AD takes place in the context
  of developmental surveillance. This screening
• tool does not take the place of whatever
  screening surveillance tool you might already be
  using
• (e.g., PEDS Tool, Denver, etc.)

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Developmental ProbesIf a parent has concerns
about a childs communication

• Then perform a communication developmental probe
  and ask the following
• Does he/she point with finger? Does he/she
  gesture, nod yes or no?
• Does he/she direct your attention to objects/show
  things to people?
• Does he/she use any odd speech? Echoes, rote,
  repeats?
• Does he/she memorize scripts or strings of
  words?
• Does he/she lead an adult by the hand?
• Does he/she give inconsistent response to name?
  /commands?

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Developmental ProbesIf a parent has concerns
about a childs social interaction

• Then perform a social developmental probe by
  asking
• Does he/she cuddle like other kids? Show interest
  in other children?
• Does he/she look at you when you play/talk? Does
  he/she smile in response to others?
• Does he/she engage in reciprocal back-and-forth
  play/turn-taking?
• Does he/she play imitation games such as
  pat-a-cake, peek-a-boo?

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Developmental ProbesIf a parent has concerns
about a childs behavior

• Then perform a behavioral probe by asking
• Is there repetitive, stereotyped or odd play?
  Does he/she have narrow range/preoccupations?
  Does he/she attend more to parts of objects?
  (e.g. wheels)
• Is there limited or absent pretend play? Does
  he/she imitate other peoples actions?
• Is there a strong attachment to unusual objects?
  Does he/she play with toys in exact same way?

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AUTISTIC DISORDERS (AD) SCREENING TOOLFor all
18-24 Month Well-Child Exams Provider Assessment
Sheet

• Detect Red Flags
• No babbling by 12 months
• No pointing or gesturing by 12 months
• No single words by 16 months
• ANY loss of ANY language or social skill at ANY
  age

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mCHAT

• Modified Checklist for Autism in Toddlers
• Robins, Fein Barton 1999
• DSM IV may not be adequate for toddlers
• Symptoms of stereotypic behaviors and unusual
  language may not be present / prominent in the
  toddler age group
• Early, aggressive interventions improve the
  outcomes for the at-risk child

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AUTISTIC DISORDERS (AD) SCREENING TOOLFor all
18-24 Month Well-Child Exams Provider Assessment
Sheet

• 3. Score the mCHAT Questionnaire completed by
  parent
• A toddler fails the screen when
• A. There are 2 or more red responses. OR
• B. There are 3 or more red and blue responses.

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Scoring the mCHAT

• Key Responses (2 or more, in red on template)
• Failed Screen - Toddler does NOT
• 2 Take interest in other children
• 7 Use index finger to point
• 9 Bring objects to show parents
• 13 Imitate parents
• 14 Respond to his / her name
• 15 Look at toy you point to across room

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Scoring the mCHAT

• Total Responses (3 or more, in red and/or blue on
  template)
• Failed Screen - Toddler has 3 or more atypical
  responses on screening questions

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AUTISTIC DISORDERS (AD) SCREENING TOOLFor all
18-24 Month Well-Child Exams Provider Assessment
Sheet

• 4. Put the results of steps 1, 2, and 3
  together
• Are any of the above questions to steps 1, 2, or
  3 answered Yes?
• If yes, the child could be at risk for AD or
  another developmental disorder.
• This is a screening tool that is not diagnostic
  of any disorder.

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AUTISTIC DISORDERS (AD) SCREENING TOOLFor all
18-24 Month Well-Child Exams Provider Assessment
Sheet

• 5. Next steps for a child at risk for AD or
  another developmental disorder
• Perform full work-up to rule out other disorders
  
• 1) Hearing impairment 4) Fragile X
• 2) Visual impairment 5) Chromosomal
  disorders
• 3) Conduct lead screening
• Refer the child for further assessment to a
  developmental pediatrician
• Refer the child to Arizona Early Intervention
  Program (AzEIP) if child is under 3 years of age
• Refer to Southwest Autism Research Resource
  Center (SARRC) for services and resources
• Phone [phone]
  www.autismcenter.org

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AUTISTIC DISORDERS (AD) SCREENING TOOLFor all
18-24 Month Well-Child Exams Provider Assessment
Sheet

• When giving feedback, parents need to know that
• This is a screening program that is not
  diagnostic of any disorder.
• This screening might not always accurately
  identify children at risk for AD therefore, in
  the decision to refer for further evaluation,
  include any other concerns you or the parent
  might have about the childs development

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Refer!!

• Early intervention, while waiting for diagnosis
• AzEIP SARRC
• DDD after diagnosis is confirmed
• Developmental Pediatrician, Psychologist,
  Psychiatrist for diagnosis
• Rule out hearing/visual impairment
• Rule out Fragile X, other syndromes, obtain high
  resolution chromosomes
• Conduct lead screening, obtain blood lead level

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Early Intervention Matrix
Parent Training Empowerment
Specialized Therapies
Early Intensive Intervention One-on-one
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Review of Todays Goals

• Learn why Mental Health Professionals
  Pediatricians need to be experts in ASDs
• Review results of baby siblings retrospective
  studies
• Recognize early developmental markers of concern
• Learn how to administer the mCHAT
• Discuss appropriate work-up referrals

43
Agencies who might be engaged by those
affected by ASDs