Autism Welcome 1 What is Autism 2 ECE

Autism… Welcome! 1. What is Autism? 2. ECE Study Results 3. Autism & Families 4. Autism: Coping with Challenging Behaviours 5. Autism: Count Us In! study Sponsored by: City of Windsor Children’s Services www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 1

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, Oct. 14, 2005 p. 2

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, Oct. 14, 2005 p. 3

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, Oct. 14, 2005 p. 4

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, Oct. 14, 2005 p. 5

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, Oct. 14, 2005 p. 6

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, Oct. 14, 2005 p. 7

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, Oct. 14, 2005 p. 8

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, Oct. 14, 2005 p. 9

Diagnosing Autism: need… • standardized behaviour ratings of child • standardized parent report of child’s behaviours • early developmental history • Psychologist or Physician with training & experience www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 10

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, Oct. 14, 2005 p. 11

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 ~ 53 months (early intervention best before 42 months) • Autistic Disorder ~ 41 months • PDDNOS ~ 61 months • Asperger’s Disorder ~ 114 months (9½ yrs) www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 12

First Concerns preliminary data from A. Spadafora, M. A. , 2005 • age at first concern ~ 19 months (1 – 48 mo. ) – approximately 34 months before diagnosis! • first concern was from parent 60% • first concern was from my child’s doctor < 5% • parents’ first concerns were language, social & abnormal behaviours (20 to 30% each) • What we are doing already is NOT good enough for EARLY identification & intervention! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 13

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, Oct. 14, 2005 p. 14

Co-authors Tammy Whitlock: Neuropsych grad student most of statistics, summarized results Lynnette Ridley: Pharmacist & Psych student, helped design questionnaire, supervised on-site data collection, qualitative data analysis, catalyst Beth Johnson: Supervisor, Ontario Early Years Centres, City of Windsor, ECE & child care background, helped interpret results www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 15

ECE Research Questions • 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? • 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, Oct. 14, 2005 p. 16

ECE Research Questions • 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, Oct. 14, 2005 p. 17

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, Oct. 14, 2005 p. 18

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, Oct. 14, 2005 p. 19

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, Oct. 14, 2005 p. 20

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, Oct. 14, 2005 p. 21

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, Oct. 14, 2005 p. 22

ECE Measures • "Autism Survey" measures knowledge of the characteristics of autism (Stone, 1987; Stone & Rosenbaum, 1988) • "Early Childhood Educators and Children with Autism" - designed for the study • asks about experiences & attitudes toward working with children with autism • demographics www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 23

Data Collection Participants were recruited at an Information Fair and Presentation, Autism in the Early Years, Oct. 21, 2004. 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) Approx. 175 attended; 150 Questionnaires handed out (91 participants = 52 to 61% return) www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 24

ECE profession vs. not ECE • no significant differences on 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, Oct. 14, 2005 p. 25

# Times Participant worked with a Child with Autism • no significant differences on 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, Oct. 14, 2005 p. 26

Knowledge - Great! Most Participants Correct on… • 97. 8% Autism does not exist only in childhood • 96. 7 disagreed “Autistic children are untestable” • 96. 6 Autistic children do not grow up to be schizophrenic • 95. 6% disagreed autism due to cold, rejecting parents • 93. 4% autism occurs in mild & extreme forms • 92. 3% autistic children are not deliberately negativistic & noncompliant www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 27

Knowledge - Good! Most Participants Correct on… • 92. 2% important for autistic children to receive special ed services at school • 92. 2% disagreed autism more common in high SES & educational levels • 92. 2% disagreed with proper treatment, most autistic children eventually “outgrow” autism • 81. 3% disagreed autistic children do not show affection www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 28

Knowledge - Okay. Many Participants Correct on… • 73. 6% disagreed autistic children do not show social attachments, even to parents • 71. 6% disagreed that it’s difficult to distinguish between autism & childhood schizophrenia • 63. 7% autism is a communication disorder • 60. 2% autism can be reliably diagnosed by age 2 • 59. 1% autism is a developmental disorder www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 29

Misconceptions! Many Participants Incorrect on… • 85. 7% disagreed that most autistic children have mental retardation • 78. 9 most autistic children have special talents or abilities • 77. 9% autistic children are more intelligent than scores from appropriate tests indicate • 76. 6 most autistic children are nonverbal • 70. 8% 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, Oct. 14, 2005 p. 30

Experiences & Attitudes 97. 8% believe it is important to identify children as young as possible 95. 5 would attend training to learn how to screen preschool children with autism 93. 4% wanted more training in how to discuss early warning signs of autism with parents 76. 7% know how & where to refer for assessments of autism 65. 9% were comfortable discussing with parents about concerns child may show signs of autism www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 31

Opinions; Best Way to Identify Children w Autism in Child Care Centres • 87. 9% training resource teachers at child care centres in screening • 73. 6% monthly screening clinic at an agency • 73. 3% training all front line staff to screen • 64. 8% telephone hotline staffed by trained staff for parents to call • 7. 7% other www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 32

Attitudes toward Screening • 80. 7% workplace would be open to new screening program for autism • 56% education prepared them for working with preschool children with autism • 40. 7% education prepared them for identifying children with autism • 34. 1% education prepared them for talking to parents about possible risk for autism in their children www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 33

Autism and Families Autism brings strong families closer can drive distant families apart www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 34

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, Oct. 14, 2005 p. 35

Families and Their Child’s ASD Diagnosis? denial? anger? bargaining? depression? acceptance? It’s a process - it takes time! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 36

Early Identification What we are doing already is NOT good enough for EARLY identification & intervention! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 37

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, Oct. 14, 2005 p. 38

Talking to Parents about Autism: Discuss • listen to the parents • start with their concerns • always be supportive • avoid jargon • keep it positive; emphasize 'ruling out' anything serious www. firstsigns. org www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 39

Autism: Coping with Challenging Behaviours www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 40

Basic Supports for All Children Supportive Environment basic needs: food, shelter, medical care, nurturance access to preferred toys, activities, interests & friends opportunities for success at the child’s level www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 41

Autism Spectrum Disorders (ASD) Children with ASD learn differently. They need different supports to help them learn & maintain behavioural control. • a range of symptoms, developmental levels Ø prevent problems while child is young Ø avoid getting negatively reinforced by your child www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 42

General Helpful Supports for Children with Autism/PDD Ø Make things predictable Ø Reduce language Ø Use visual supports Ø Broaden preoccupations Ø Reduce anxiety www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 43

Further Support for Children with Challenging Behaviours Medical/Dental Intervention: A thorough checkup may identify physical problems contributing to the challenging behaviour especially when the child’s behaviour pattern has recently changed. Jonathon's story, by Mary Matsoukas. "Jon has been afflicted with. . . allergies. . . sinus headaches, asthma, migraines & psychomotor seizures. ” Advocate, 24(3), Fall 1992, pp. 8 -9. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 44

Discover What the Child’s Behaviour is Communicating Observe the child AND the environment carefully. Ask an impartial person to observe. Chart the target behaviour systematically. You may be surprised! Find out the child’s motivation for the challenging behaviour. Escape is the most common motivation for children with autism/PDD. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 45

Four Common Motivations for Challenging Behaviour I need Attention: behaviour to get social attention from other people. I want Tangibles: behaviour to get food, toys, or activities. I must Escape: behaviour to get away from a person, demand, or situation. I feel Sensory: behaviour to get new or different sensory input - may like or dislike the current sensory input, or be overwhelmed. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 46

Develop Individual Strategies to Support the Person Individualize to target the child’s motivation for the challenging behaviours. Take into account; triggers, preferences, methods to calm the child, the child’s skills & needs. Develop a three-pronged plan including avoidance, reactive & proactive strategies. Using only reactive strategies rarely works! www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 47

Three Part Plan Avoidance (Before): prevent some of the challenging behaviours before they happen by modifying the environment, task demands, & our behaviour. Reactive (During): to help end challenging behaviours when they are happening as quickly & with as little fuss as possible. Proactive (After): to teach new coping skills to replace challenging behaviours. www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 48

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. 49

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. 50

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. 51

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. 52

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. 53

How Parents Can Participate Ask a Research Assistant at a community event to fill out a questionnaire! - OR Call 255 -1234 Please leave a message. A trained research assistant will call you back in a day or two. www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 54

Autism: Count Us In! We will ask you to answer questions about: q Your child’s diagnosis or symptoms q Your child’s treatment & needs q Any support & training needed for your family Your answers will be confidential. You can choose not to give your name, etc. You will be eligible for a raffle for a gift certificate! www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21, 2005 p. 55

Research Team Principal Investigator: Marcia Gragg, Ph. D. , C. Psych Research Assistants: Samantha Scapinello, M. A. , Ph. D. Psychology Student Andrea Cooper, BSc Nursing Student Vara Parameswaran, BCN Student Parent Advisor: Irene Baert www. uwindsor. ca/countusin © Marcia Gragg, Ph. D, CPsych, Sept. 21 /05 p. 56

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. 57

“Even the smallest footsteps can cross great distances. ” www. summitcentre. org © Marcia Gragg, Ph. D, CPsych, Oct. 14, 2005 p. 58