Autism Early Identification 1 Earliest Signs of Autism

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Autism… Early Identification 1. Earliest Signs of Autism 2. ECE Study Results 3. Autism

Autism… Early Identification 1. Earliest Signs of Autism 2. ECE Study Results 3. Autism & Families 4. Autism: Count Us In! study Sponsored by: City of Windsor, Children’s Services, AECEO Windsor/Essex, & St. Clair College, Early Childhood Education and Child Care Services Departments www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 1

What is Autism? Behaviour Communication no/delayed speech difficulty with change ê 2 -way conversation

What is Autism? Behaviour Communication no/delayed speech difficulty with change ê 2 -way conversation intense interests not reciprocal repetitive and weak nonverbal “sticky” Social weak play low social interest ê friendships for level not reciprocal weak sharing eye contact weak nonverbal www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 2

Autism is… Øa spectrum disorder • from very delayed to above average abilities •

Autism is… Øa spectrum disorder • from very delayed to above average abilities • from mild to moderate to severe autistic behaviours Ødevelopmental • abilities & symptoms may improve with good programming www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 3

Autism: Associated Features may occur, not required for diagnosis • cognitive; deficits, strengths &

Autism: Associated Features may occur, not required for diagnosis • cognitive; deficits, strengths & weaknesses (50 -70% intellectual impairment) • unusual motor behaviours • unusual sensory behaviours • eating, sleeping, drinking • attention; joint, shifting, focus • mood; anxieties & fears • medical conditions, seizures www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 4

Red Flags immediate evaluation if • no babbling by 12 months • no gesturing

Red Flags immediate evaluation if • no babbling by 12 months • no gesturing by 12 months • no single words by 16 months • no 2 -word phrases by 24 months (not just echolalic) • any loss of any language or social skills at any age (30%) Filipek et al, Amer. Acad. Neurology, 2000 www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 5

First Signs of Autism: Behaviour At 12 months of age, may see unusual •

First Signs of Autism: Behaviour At 12 months of age, may see unusual • eye contact • imitation • visual tracking • social smiling • disengagement of visual attention • reactivity, social interest & affect • orienting to name • sensory behaviors Zwaigenbaum, Bryson, Rogers, Rogerts, Brian & Szatmari, 2005 www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 6

First Signs of Autism: Other Temperament: • 6 months, marked passivity & low activity

First Signs of Autism: Other Temperament: • 6 months, marked passivity & low activity level • 12 months, extreme distress, fixating on particular objects, & rarely in a positive mood Delayed expressive & receptive language Zwaigenbaum, Bryson, Rogers, Rogerts, Brian & Szatmari, 2005 Challenging behaviours may be the first sign of high functioning autism www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 7

Causes of Autism • neurological disorder • 4. 3 boys to every girl •

Causes of Autism • neurological disorder • 4. 3 boys to every girl • genetic susceptibility • environmental triggers? • not related to parenting or learning • not related to MMR vaccine or preservatives in vaccines www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 8

More Children with Autism? 1. 60 per 10, 000 children (Fombonne, 2003) • 1

More Children with Autism? 1. 60 per 10, 000 children (Fombonne, 2003) • 1 in every 166 children • 1 in every 455 girls • 1 in every 101 boys 1. more children identified now ? ? ? – better identification? - better public awareness - wider definition - misdiagnoses? • increased prevalence, incidence? www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 9

Early Diagnosis of Autism Why? • early intervention better prognosis • so parents know

Early Diagnosis of Autism Why? • early intervention better prognosis • so parents know • connect to autism community • support for families www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 10

Ontario Parents’ Experiences preliminary data from A. Spadafora, M. A. , 2005 • 78

Ontario Parents’ Experiences preliminary data from A. Spadafora, M. A. , 2005 • 78 parents of 80 children with PDDs • median birth year of 2000 (1968 -2001) • average of diagnosis ~ 51 months (early intervention best before 42 months) • Autistic Disorder ~ 41 months • PDDNOS ~ 64 months • Asperger’s Disorder ~ 96 months (8 yrs) www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 11

Age at first concern ~ 19 months, approx. 32 months before diagnosis! First concern

Age at first concern ~ 19 months, approx. 32 months before diagnosis! First concern was from parent 60% First concern from child’s doctor < 5% What we are doing already is NOT good enough for EARLY identification & intervention! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 12

Early Childhood Educators’ knowledge and attitudes towards early identification of Autism Gragg, Whitlock, Ridley

Early Childhood Educators’ knowledge and attitudes towards early identification of Autism Gragg, Whitlock, Ridley & Johnson Thank you to all who participated!!! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 13

ECE Research Questions 1. What do Early Childhood Educators and others working in local

ECE Research Questions 1. What do Early Childhood Educators and others working in local child care centres (ECE’s) already know about autism in general, & the very early signs of autism in young children? 2. What experiences have ECE’s had working with young children with autism (both diagnosed and undiagnosed) and their parents in local child care centres? www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 14

ECE Research Questions 3. What are ECE’s attitudes toward; • receiving training in screening

ECE Research Questions 3. What are ECE’s attitudes toward; • receiving training in screening children with autism • talking to parents of young children about suspected autism, & • participating in various models of screening programs for autism in local child care centres? www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 15

ECE Participants 91 participants - 90 female, 1 male Profession 64. 4 ECE, 34.

ECE Participants 91 participants - 90 female, 1 male Profession 64. 4 ECE, 34. 4 other Education 64. 4 ECE diploma • 38. 9 University education • 10% some college • 15. 6 % other college diploma • 15. 6% only high school • 8. 9% other www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 16

ECE Participants Experience in Childcare • 14. 6% for 0 -1 year • 37.

ECE Participants Experience in Childcare • 14. 6% for 0 -1 year • 37. 1% for 2 -5 years • 15. 7% for 6 -10 years • 32. 6% for >10 years www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 17

Experience Working with Children previously diagnosed with Autism 12. 0% 0 times 18. 1%

Experience Working with Children previously diagnosed with Autism 12. 0% 0 times 18. 1% 1 time 25. 3% 2 to 5 times 44. 6% > 5 times www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 18

Experience Discussing Concerns about Autism with Parents 47. 6% 0 times 17. 9% 1

Experience Discussing Concerns about Autism with Parents 47. 6% 0 times 17. 9% 1 time 21. 4% 2 to 5 times 13. 1% > 5 times www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 19

Experience with Preschool Children Suspected with Autism 17. 9% 0 times 19. 0% 1

Experience with Preschool Children Suspected with Autism 17. 9% 0 times 19. 0% 1 time 40. 5% 2 to 5 times 22. 6% > 5 times www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 20

Data Collection Participants were recruited at an Information Fair and Presentation, Autism in the

Data Collection Participants were recruited at an Information Fair and Presentation, Autism in the Early Years, Oct. 21, 2004. Approx. 175 attended; 150 Questionnaires handed out (91 participants = 52 to 61% return) Sponsored by a partnership of; The Association of Early Childhood Educators, Windsor/Essex Branch, The City of Windsor, Children's Services, & St. Clair College, School of Community Studies (ECE) www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 21

ECE profession vs. not ECE • no significant differences in autism knowledge • 61.

ECE profession vs. not ECE • no significant differences in autism knowledge • 61. 8% correct for all participants • no significant differences in how many were comfortable in diagnosing or identifying a child as autistic (overall 24. 2% felt comfortable to do this) www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 22

# Times Participant worked with a Child with Autism • no significant differences in

# Times Participant worked with a Child with Autism • no significant differences in autism knowledge • no significant differences in how many were comfortable in diagnosing or identifying a child as autistic www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 23

Knowledge - Great! 90% or more knew… • Autism does not exist only in

Knowledge - Great! 90% or more knew… • Autism does not exist only in childhood • Autistic children are not untestable • Autistic children do not grow up to be schizophrenic • Autism not due to cold, rejecting parents • Autism occurs in mild & extreme forms • Autistic children are not deliberately noncompliant www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 24

Knowledge - Good! 80% or more knew… • Important for autistic children to receive

Knowledge - Good! 80% or more knew… • Important for autistic children to receive special ed services at school • Autism not more common in high SES & educational levels • Most autistic children do not “outgrow” autism • Autistic children can show affection www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 25

Knowledge - Okay. 60% or more knew… • Autistic children can show social attachments,

Knowledge - Okay. 60% or more knew… • Autistic children can show social attachments, even to parents • It’s possible to distinguish between autism & childhood schizophrenia • Autism is a communication disorder • Autism can be reliably diagnosed by age 2 • Autism is a developmental disorder www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 26

Misconceptions! Many Participants Incorrect on… 86% disagreed that most autistic children have mental retardation

Misconceptions! Many Participants Incorrect on… 86% disagreed that most autistic children have mental retardation 79% most autistic children have special talents or abilities 78% autistic children are more intelligent than scores from appropriate tests indicate 77% most autistic children are nonverbal 71% emotional factors play a major role in the cause of autism 50% Autism is an emotional disorder www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 27

Experiences & Attitudes 98% believe it is important to identify children as young as

Experiences & Attitudes 98% believe it is important to identify children as young as possible 96% would attend training to learn how to screen preschool children with autism 93% wanted more training in how to discuss early warning signs of autism with parents 77% know how & where to refer for assessments of autism 66% were comfortable discussing with parents about concerns child may show signs of autism www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 28

Opinions; Best Way to Identify Children w Autism in Child Care Centres 88% training

Opinions; Best Way to Identify Children w Autism in Child Care Centres 88% training resource teachers at child care centres in screening 74% monthly screening clinic at an agency 74% training all front line staff to screen 65% telephone hotline staffed by trained staff for parents to call 8% other www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 29

Attitudes toward Screening 81% workplace would be open to new screening program for autism

Attitudes toward Screening 81% workplace would be open to new screening program for autism 56% education prepared them for working with preschool children with autism 41% education prepared them for identifying children with autism 34% education prepared them for talking to parents about possible risk for autism in their children www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 30

Families: Research Shows Social Support Ø helps parents of children with autism Ø helps

Families: Research Shows Social Support Ø helps parents of children with autism Ø helps siblings of children with autism AND Ø helps children with autism make more progress www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 31

Talking to Parents about Autism: Prepare If you suspect autism, take action! • observe

Talking to Parents about Autism: Prepare If you suspect autism, take action! • observe child’s behaviour • make notes • consult with co-workers, supervisor • gather information about supports • timing www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 32

Talking to Parents about Autism: Discuss • listen to the parents • start with

Talking to Parents about Autism: Discuss • listen to the parents • start with their concerns • always be supportive • avoid jargon www. firstsigns. org • keep it positive; emphasize 'ruling out' anything serious www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 33

Autism: Count Us In! Do you or someone you know have a child with

Autism: Count Us In! Do you or someone you know have a child with difficulties in: q Communication, q Social Interaction, AND q Behaviour www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 34

Research Questions 1. How many children with ASD born between 1999 & 2003 are

Research Questions 1. How many children with ASD born between 1999 & 2003 are there in Windsor/Essex? 2. Are there more children with ASD in Windsor & Essex County than in other parts of Ontario? www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 35

Research Questions 3. Is Applied Behaviour Analysis (ABA), or Intensive Behaviour Intervention (IBI), getting

Research Questions 3. Is Applied Behaviour Analysis (ABA), or Intensive Behaviour Intervention (IBI), getting to young children with ASD in Windsor/Essex? 4. What needs do local parents see for their families & for their young children with ASD? www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 36

Autism: Count Us In! … is a research study to help answer these questions.

Autism: Count Us In! … is a research study to help answer these questions. But to do this. . . We need your help! www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 37

Who can Participate: Parents of children who are: Ø born between 1999— 2003 Ø

Who can Participate: Parents of children who are: Ø born between 1999— 2003 Ø living in Windsor-Essex County Ø diagnosed with an Autism Spectrum Disorder - OR Ø showing some symptoms www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 38

Contact Us 659 Lincoln Road, Woollatt Hall Windsor, ON N 8 Y 2 G

Contact Us 659 Lincoln Road, Woollatt Hall Windsor, ON N 8 Y 2 G 8 519 -255 -1234 email countusin@uwindsor. ca www. uwindsor. ca/countusin This study has been reviewed and received ethics clearance through the University of Windsor Research Ethics Board. © M. Gragg, Ph. D, CPsych, Sept. 12, 2005 p. 39

“Even the smallest footsteps can cross great distances. ” www. summitcentre. org © Marcia

“Even the smallest footsteps can cross great distances. ” www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Feb. 4, 2006 p. 40