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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. To identify typical development and atypical early indicators of concern for autism-risk.

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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


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Overview and Objectives

To identify typical development and atypical early indicators of concern for autism-risk.

To understand best practice guidelines for screening for at-risk behaviors/autism.

To establish rapport and trust with families in the screening process.

To develop consistent referral pathways for children with autism risk in screening.


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Overview and Objectives

To identify typical development and atypical early indicators of concern for autism-risk

To understand best practice guidelines for screening for at-risk behaviors/autism.

To establish rapport and trust with families in the screening process.

To develop consistent referral pathways for children with autism risk in screening.


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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 MilestonesFirst Signs, Inc. (2004) Key Social, Emotional, and Communication Milestones for Your Baby’s Healthy Development


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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


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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


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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


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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


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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

Key Developmental Milestones


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Common Presenting Features of Autism Spectrum DisordersFrom 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


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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

Unusual Stereotypic Behaviors


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Sensory Aversions

  • Over-or-under reactive sensory input

    • touch, sound, taste, sight, hearing

  • Over-arousal and regulatory issues

  • Difficulty processing sensory information


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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.)

Physiological Concerns


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Other Concerns

  • Sibling of a child with autism spectrum disorder

  • Familial presence of other warning signs


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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


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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


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    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)


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    Clinical Features

    • Five specific spectrum diagnoses used by DSM-IV:

      • Autistic disorder

      • Asperger disorder

      • Rett disorder

      • Childhood disintegrative disorder

      • Pervasive developmental disorder-NOS


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    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


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    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


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    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


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    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


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    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


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    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


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    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


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    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


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    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


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    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.


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    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


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    Autism Can Be Identified Early Basis

    • 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


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    Overview and Objectives Basis

    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.


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    Key Screening Questions Basis

    • 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?



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    Screening results are consistent with typical development. BasisNo 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

    Screening Results


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    Building on What We Know: The Critical Role of the Screener Basis

    • 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


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    Best Practices for the Process Basis

    • 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


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    Best Practices (cont.) Basis

    • 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


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    Integrating Infant Family & Early Mental Health Approaches Basis

    • Relationship-based approach to services.

    • Strength-based approaches to services.

    • Parallel process: modeling a supportive relationship.

    • Reflection with the family.


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    BasisParents 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).


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    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:

      • Promotionof healthy social and emotional development

      • Prevention-intervention of mental health difficulties

      • Treatment of mental health conditions in the context of their families


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    Pyramid Promoting Healthy Social and Emotional Development (con’t)

    Treatment

    Prevention-Intervention

    Promotion


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    Promotion of Healthy Social and Emotional Development (con’t)

    • 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.


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    Prevention-Intervention (con’t)

    • 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.


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    Treatment (con’t)

    • 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.


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    Overview and Objectives (con’t)

    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.


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    Collaboration with Families (con’t)

    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)


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    Family/Professional Collaboration (con’t)

    • 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.


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    Family/Professional Collaboration (con’t)

    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.”


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    Collaboration with Families (con’t)

    • 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


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    Overview and Objectives (con’t)

    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.


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    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.


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    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.


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    Best Practice for Screening for ASD in Autism

    • 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.


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    Screening Instruments for ASD in Autism

    • 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)


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    Screening Exemplar: M-CHAT in Autism

    • 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.


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    Screening Exemplar: M-CHAT in Autism

    • 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?


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    Autism Can Be Identified Early In Very Young Children in Autism

    • 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.


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    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.


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    Elicit and Value Parental Concerns Surveillance

    • 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


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    Roles of Early Identification and Screening for Referral Surveillance

    • 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


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    Role of California’s Regional Centers and Public Schools Surveillance

    • 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


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    Role of California’s Regional Centers and Public Schools Surveillance

    • 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


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    Referral of Child with Possible ASD Surveillance

    • 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


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    Contact Information Surveillance

    ammastergeorge@ucdavis.edu

    http://hcd.ucdavis.edu/faculty/mastergeorge/

    mastergeorge.html

    www.mindinstitute.org


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    Website Resources: General Development Surveillance

    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


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    http://www.first5caspecialneeds.org Surveillance

    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

    Website Resources: Autism