1. Autism… Welcome! What is Autism? ECE Study Results Autism & Families
Autism: Coping with Challenging Behaviours
Autism: Count Us In! study
Sponsored by: City of Windsor Children’s Services
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 1

2. What is Autism? Behaviour Social Communication and
difficulty with change
intense interests
repetitive
“sticky”
no/delayed speech
2-way conversation
not reciprocal
weak nonverbal
weak play
and
Social
low social interest
friendships for level
not reciprocal
weak sharing
eye contact
weak nonverbal
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 2

3. Autism is… a spectrum disorder developmental
from very delayed to above average abilities
from mild to moderate to severe autistic behaviours
developmental
abilities & symptoms may improve with good programming
Everyone with autism is an individual
They don’t stay the same - almost always see improvement, sometimes more rapid improvement in preschool years with intensive early intervention
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 3

4. 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
medical conditions – 6% have 7 clearcut medical disorders potentially causally associated with autism (cerebral palsy, Fragile X, Tuberous Sclerosis, PKU, neurofibromatosis, congenital rubella, Down’s Syndrome)
- other medical events of potential etiological significance (encephalitis, congenital anomalies, other rare medical syndromes)
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 4

5. 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%)
Guideline. A recommendation for patient management that reflects moderate clinical certainty
Further developmental evaluation is required whenever a child fails to meet any of the following milestones (Guideline): babbling by 12 months; gesturing (e.g., pointing, waving bye-bye) by 12 months; single words by 16 months; two-word
spontaneous (not just echolalic) phrases by 24 months; loss of any language or social skills at any age.
Practice parameter: Screening and diagnosis of autism: Report of the Quality Standards Subcommittee of the
American Academy of Neurology and the Child Neurology Society
P.A. Filipek, MD; P.J. Accardo, MD; S. Ashwal, MD; G.T. Baranek, PhD, OTR/L; E.H. Cook, Jr., MD; G. Dawson, PhD; B. Gordon, MD, PhD; J.S. Gravel, PhD; C.P. Johnson, MEd, MD; R.J. Kallen, MD; S.E. Levy, MD; N.J. Minshew, MD; S. Ozonoff, PhD; B.M. Prizant, PhD, CCC-SLP; I. Rapin, MD; S.J. Rogers, PhD; W.L. Stone, PhD; S.W. Teplin, MD; R.F. Tuchman, MD; and F.R. Volkmar, MD NEUROLOGY 2000;55:468–479
Filipek et al, Amer. Acad. Neurology, 2000
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 5

6. First Signs of Autism: Behaviour At 12 months of age, may see unusuald
eye contact
visual tracking
disengagement of visual attention
orienting to name
imitation
social smiling
reactivity, social interest & affect
sensory behaviors
Zwaigenbaum, Bryson, Rogers, Rogerts, Brian & Szatmari, 2005
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 6

7. 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 d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 7

8. 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 d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 8

9. More Children with Autism?
60 per 10,000 children (Fombonne, 2003)
1 in every 166 children
1 in every 455 girls
1 in every 101 boys
more children identified now
??? – better identification?
- better public awareness
- wider definition
- misdiagnoses?
increased prevalence, incidence?
Fombonne (2003). Epidemiological surveys of autism and other pervasive developmental disorders. JADD, Vol. 33(4), pp 356 – 382.
We do not know if ASDs are becoming more common in the United States.
today more children are being identified as having an ASD than in the past.
studies that have looked at how common ASDs are often used different ways to identify children with ASDs, and it is possible that researchers have just gotten better at identifying these children.
also possible that professionals know more about ASDs now and are therefore more likely to diagnose them correctly. Also, a wider range of people are now being classified as having ASDs, including people with very good language and thinking skills in some areas who have unusual ways of interacting or behaving.
Misdiagnosis may account for rise in autism cases
Important question of whether ASDs are truly becoming more common
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 9

10. Diagnosing Autism: need…
standardized behaviour ratings of child
standardized parent report of child’s behaviours
early developmental history
Psychologist or Physician with training & experience
- NEVER diagnose solely on basis of parent report
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 10

11. Early Diagnosis of Autism
Why?
early intervention  better prognosis
so parents know
connect to autism community
support for families
early diagnosis resulting in early, appropriate and consistent intervention has been shown to be associated with improved long-term outcomes - AAP ISSUES GUIDELINES ON DIAGNOSIS AND MANAGEMENT OF AUTISM
Pediatrics, the peer-reviewed scientific journal of the American Academy of Pediatrics (AAP). May 7th, 2001
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 11

12. Ontario Parents’ Experiences preliminary data from A. Spadafora, M. A
78 parents of 80 children with PDDs
median birth year of 2000 ( )
average age of diagnosis ~ 53 months
(early intervention best before 42 months)
Autistic Disorder ~ 41 months
PDDNOS ~ 61 months
Asperger’s Disorder ~ 114 months (9½ yrs)
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 12

13. 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!
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 13

14. Gragg, Whitlock, Ridley & Johnson
Early Childhood Educators’ knowledge and attitudes towards early identification of Autism
Gragg, Whitlock, Ridley & Johnson
Thank you to all who participated!!!
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 14

15. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 15

16. 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?
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 16

17. 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?
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 17

18. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 18

19. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 19

20. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 20

21. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 21

22. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 22

23. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 23

24. 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)
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 24

25. 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)
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 25

26. # 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 26

27. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 27

28. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 28

29. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 29

30. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 30

31. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 31

32. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 32

33. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 33

34. Autism and Families Autism brings strong families closer
can drive distant families apart d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 34

35. Families: Research Shows Social Support
helps parents of children with autism
helps siblings of children with autism
AND
helps children with autism make more progress d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 35

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

37. Early Identification
What we are doing already is NOT good enough for EARLY identification & intervention!
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 37

38. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 38

39. 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
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 39

40. Autism: Coping with Challenging Behaviours
Notes from my talk are on Summit Centre website – URL on bottom of each page
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 40

41. 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 d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 41

42. 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
prevent problems while child is young
avoid getting negatively reinforced by your child d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 42

43. General Helpful Supports for Children with Autism/PDD
Make things predictable
Reduce language
Use visual supports
Broaden preoccupations
Reduce anxiety d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 43

44. 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. d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 44

45. 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. d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 45

46. 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. d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 46

47. 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! d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 47

48. 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. d
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 48

49. Autism: Count Us In!
Do you or someone you know have a child with difficulties in:
Communication,
Social Interaction, AND
Behaviour d
© Marcia Gragg, PhD, CPsych, Sept. 21, p. 49

50. 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? d
© Marcia Gragg, PhD, CPsych, Sept. 21, p. 50

51. 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? d
© Marcia Gragg, PhD, CPsych, Sept. 21, p. 51

52. Autism: Count Us In! But to do this... We need your help!
 … is a research study to help answer these questions.
But to do this...
We need your help! d
© Marcia Gragg, PhD, CPsych, Sept. 21, p. 52

53. Who can Participate: Parents of children who are:
born between 1999—2003
living in Windsor-Essex County
diagnosed with an Autism Spectrum Disorder - OR -
showing some symptoms d
© Marcia Gragg, PhD, CPsych, Sept. 21, p. 53

54. How Parents Can Participate
Ask a Research Assistant at a community event to fill out a questionnaire! - OR -
Call Please leave a message.
A trained research assistant will call you back in a day or two. d
© Marcia Gragg, PhD, CPsych, Sept. 21, p. 54

55. Autism: Count Us In! We will ask you to answer questions about:
Your child’s diagnosis or symptoms
Your child’s treatment & needs
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! d
© Marcia Gragg, PhD, CPsych, Sept. 21, p. 55

56. 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 d
© Marcia Gragg, PhD, CPsych, Sept. 21 /05 p. 56

57. 659 Lincoln Road, Woollatt Hall
Contact Us
659 Lincoln Road, Woollatt Hall
Windsor, ON N8Y 2G8
 This study has been reviewed and received ethics clearance through the University of Windsor Research Ethics Board.
© M. Gragg, PhD, CPsych, Sept. 12, p. 57

58. “Even the smallest footsteps can cross great distances.”
All drawings by enrolled children
All photos with consent of parents and staff
“Even the smallest footsteps can cross great distances.”
© Marcia Gragg, PhD, CPsych, Oct. 14, p. 58