Progress Towards Earlier Diagnosis of ASD Lonnie Zwaigenbaum MD FRCPC Co-director, Autism Research Centre Glenrose Rehabilitation Hospital Department of Pediatrics, University of Alberta

Age of diagnosis in recent studies Author(s) Age at diagnosis Time period (birth year) United Kingdom Taylor et al., 1999 Taylor et al., 1999 Powell et al., 2000 Powell et al., 2000 Lingam et al., 2003 Lingam et al., 2003 Chakrabarti, 2001 Chakrabarti, years 3.3 years 3.4 years United States Croen et al., 2002 Croen et al., 2002 Yeargin-Alsopp et al, 2003 Yeargin-Alsopp et al, 2003 Mandell et al., 2002 Mandell et al., 2002 Wiggins et al., 2006 Wiggins et al., 2006 CDC, 2007 CDC, years 3.9 years W 6.3 / A 7.1 yr 5.1 years 4.1 – 5.5 years

Importance of early diagnosis… ► Respectful and compassionate response to parental concerns ► Earlier initiation of autism-specific interventions – benefits for the child, family and community ► Inform parents about recurrence risk

Essential steps towards earlier diagnosis… ► Identify children with early signs ► Diagnostic assessment model appropriate for very young children ► Access to effective interventions ► Adequate system capacity to support each step

Early signs of ASD: Information sources ► Parents’ reports  30-50% of parents recall concerns in the first year, 80% by age 2. ► Home video analyses ► Follow-up studies of high-risk infants

Infant Sibling Studies ► Siblings are at increased risk ► Learn about early signs of autism as they first emerge ► Can combine behavioral and biological measures ► Promote earlier detection, diagnosis and intervention ► Alberta-based infant sibling research

Early signs of ASD: findings in high-risk infants ► Language/communication ► Play interests and behavior ► Visual attention ► Motor skills and behavior ► Temperament

Early signs of ASD: findings in high-risk infants ► Language/communication ► Play interests and behavior ► Visual attention ► Motor skills and behavior ► Temperament

Early signs of ASD: Language and social-communication ► Delays in early comprehension  General understanding of words and phrases  Orienting to name ► Delays in use of gestures ► Reduced babbling  Esp. back-and-forth social babbling ► Reduced social-communication  eye gaze, social smiling, expression of positive affect

Early signs of ASD: Play ► Reduced imitation of actions ► Reduced interest in toys ► Repetitive actions with toys  e.g., spinning, rolling ► Prolonged/intense visual examination of toys and other objects

Early signs of ASD: findings in high-risk infants ► Language/communication ► Play interests and behavior ► Visual attention ► Motor skills and behavior ► Temperament

► Role of ASD screening  May help identify ASD earlier and more consistently  Broadband and ASD-specific screening questionnaires ► ► Diagnostic assessment  Importance of multi-disciplinary team  Identify functional concerns to inform intervention planning  For some children, may be a longer-term process  Evidence of stability of ASD diagnoses prior to age 2

Evidence-based interventions for toddlers with ASD ► Developmentally appropriate strategies:  Children as active learners  Parents as primary social partners  Learning opportunities in everyday play and care-taking activities ► Emerging evidence of treatment effectiveness in children with confirmed/suspected ASD < 2 years (Vismara et al., 2009; Dawson et al., in press). ► Intervention models being evaluated:  Early Start Denver Model, Hanen More than Words, Social ABCs/ Pivotal Response Training…

Important challenges… ► Uptake of early detection strategies  Need to address multiple points of entry into health, development and child care systems  Knowledge vs. attitudes/worldviews  Opposition to ASD screening ► Building system capacity  Access to specialized assessment and treatment services (and ensuring links between the two) ► Sustaining efforts to improve diagnostic and treatment strategies across the age span

Alberta is a great place… ► Strong partnerships with key stakeholders at all stages of research (e.g., ACCFCR)  Families, clinicians, health and policy decision makers  Focus on meaningful outcomes, strong links to KTE ► Supportive family and advocacy community ► Great colleagues/trainees, excellent working relationship across academic centres

Alberta is a great place… ► Strong partnerships with key stakeholders at all stages of research (e.g., ACCFCR)  Families, clinicians, health and policy decision makers  Focus on meaningful outcomes, strong links to KTE ► Supportive family and advocacy community ► Great colleagues/trainees, excellent working relationship across academic centres ► Year-long Winter Wonderland!!!

Acknowledgements ► Dalhousie University  Susan Bryson PhD  Isabel Smith PhD  Theresa McCormick BA  Nancy Garon PhD ► McMaster University  Peter Szatmari MD  Caroline Roncadin PhD  Michelle Pawliw MA  Ann Thompson MSc ► University of Toronto  Wendy Roberts MD  Jessica Brian PhD  Vanessa Reinhardt BA  Bonnie MacKinnon MA ► University of Alberta  Wendy Mitchell MSc SLP  Susan Bauld MA  Heather Wagg BSc Our Research is supported by Sinneave Family Foundation Autism Speaks Canadian Institutes of Health Research Alberta Heritage Foundation for Medical Research Many wonderful children and families!