1. All About Autism Welcome! What is Autism/ASD? Managing a New Diagnosis
These notes available on under “Workshops”
welcome
Congratulations and thank you to the small committee of parents, Cathy Coppens who got this started - Jodie Goulet and Tracy Regal, - Cheryl Huczel and ASI and other agencies! Amazing to get so many agencies to co-operate on anything! Notes from my talk are on Summit Centre website – URL on bottom of each page
who are in audience (parents, professionals)?
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 1

2. Communication Disorder
What is Autism?
Sticky Behaviour
Communication Disorder
difficulty with change
intense interests
repetitive
no/delayed speech
2-way conversation
not reciprocal
weak nonverbal
weak play
and
Low Social Interest
friendships for level
not reciprocal
weak sharing
eye contact
weak nonverbal
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 2

3. Autism/ASD is… a spectrum disorder developmental
often “Autism Spectrum Disorders”
from very delayed to above average abilities
from mild to moderate to severe autistic behaviours
developmental
abilities & symptoms usually 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, Nov. 8, p. 3

4. ASD: 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, Nov. 8, p. 4

5. First Signs of ASD: Behaviour At 12 months of age, may see unusual
eye contact
visual tracking
disengagement of visual attention
orienting to name
imitation
social smiling
reactivity, social interest & affect
sensory behaviors d
Zwaigenbaum, Bryson, Rogers, Rogerts, Brian & Szatmari, 2005
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 5

6. First Signs of ASD: Other
Temperament:
6 months - 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, Nov. 8, p. 6

7. Causes of ASD neurological disorder 4.6 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, Nov. 8, p. 7

8. More Children with ASD? 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, Nov. 8, p. 8

9. Diagnosing ASD: 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, Nov. 8, p. 9

10. Early Diagnosis of ASD 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, Nov. 8, p. 10

11. Managing a New Diagnosis
How many of us;
remember facing a family member’s new diagnosis of ASD in the past?
are facing a family member’s new diagnosis of ASD right now?
are dealing with a suspected diagnosis of ASD right now?
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 11

12. Managing a New Diagnosis of ASD
Emotional Reactions
acceptance is a process
everyone reacts differently
it takes time!
Action Needed!
don’t “wait and see”
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 12

13. Emotional Reactions to a New Diagnosis of ASD
shock
denial
sadness
anger
blame
guilt
fear
helplessness
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 13

14. Emotional Reactions to a New Diagnosis of ASD
grief for the child you imagined
overwhelmed
relief
hope
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 14

15. Acceptance Spiral
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 15

16. Action Needed! Don’t “wait and see”.
60 to 75% biological mother is the first person concerned about child’s development!
Take Action!
to help your child
to support your other children
to support your relationships
to support yourself
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 16

17. Practical Steps get a 2nd or 3rd opinion? Social Support Document
Inform Yourself
Early Intensive Intervention
Monitor your other children
Give yourself time
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 17

18. More Assessment? get a 2nd or 3rd opinion on ASD diagnosis?
pros & cons
other assessments;
Psychological: intellectual, adaptive
Speech and Language
medical
Occupational Therapy
Physiotherapy
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 18

19. Autism brings strong families closer can drive distant families apart
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 19

20. Research: Social Support
helps parents of children with ASD
helps siblings of children with ASD
AND
helps children with ASD make more progress d
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 20

21. Social Support tell your family and friends
acceptance is a process for them too
give them information on ASD
get them involved!
say yes to offers of help
balance needs of all family members
take care of yourself!!!
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 21

22. Let Your Family & Friends Know…
Relatives may not know what they can do to support you, your child with autism, and your other children.
how they can support you and your family
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 22

23. Support can be… driving child care listening shopping volunteering
being with you
activities with your other children
showing you that they care! d
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 23

24. Document Start a file with your child’s records folder, binder, book
your child’s developmental milestones
copies of all reports, notes, etc.
names & contact info for all professionals
this will save you time & grief in the future!
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 24

25. Inform Yourself All About Autism meetings ask other parents Internet
ASI Resource Library
books
conferences
Evaluate all information you get!
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 25

26. Early Intensive Intervention
Applied Behaviour Analysis (ABA) or Intensive Behaviour Intervention (IBI)
strongest research support in producing lasting improvements in learning and behaviour for young children with autism
Summit Centre for Preschool Children with Autism – also Intensive Parent Training 2007
Thames Valley Children’s Centre – The Autism Program South West Region
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 26

27. Monitor your other children
siblings have increased risk of ASD’s
also monitor your other children for any other social, language, learning, behaviour or emotional difficulties
most siblings have no developmental issues
balance needs of all your children
still need support!
Summit Centre has sibling support group for ages 4 to 12 years
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 27

28. Give Yourself Time acceptance is a process
many parents feel overwhelmed
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 28

29. “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, Nov. 8, p. 29

30. Comments? Questions? Concerns?
Thank you!
Comments? Questions? Concerns?
© Marcia Gragg, PhD, CPsych, Nov. 8, p. 30