Sharing the diagnosis - Amaze

© Susan Wade 2012
Image: Wade, S. (2012)
Victorian Autism Conference, 2012

� Introduction
� Before: Preparing to ‘share’
� During: Sharing the diagnosis
� After: Building understanding
� Reflections on the process
� Questions
© Susan Wade 2012

© Susan Wade 2012
Image: Wade, S. (2012)
“…[diagnosis] allows teachers and
others to disengage from otherwise
unhelpful labels, such as ‘lazy’, ‘rude’,
‘defiant’…” (Jordan, 2003, p.212)
“I'm glad I have a label. My label helps
me to understand who I am and why I
function as I do… we can view it as
informing…” (Lawson, 2008, p.98)
Self-understanding, self-management & self-advocacy
Jordan, 2003; Lawson, 2008; Shore, 2004; Whitaker , 2006

Abilities,
Achievement
& the Autism
Spectrum
Seeking participants…
Adults on the autism spectrum (with a diagnosis)
& people with knowledge of individuals on the autism
spectrum (any age with a diagnosis) who can help us learn
about high abilities and achievements.
Adults with ASD
Parents Teachers Psychologists Mentors
achievements Asperger’s
autism capacity creativity
education gifted high abilities
intelligence interest
learning strengths successes
talent twice-exceptional
Coaches
This research has obtained ethics clearance from the Monash University Ethics Committee CF11/3664 - 2011001929
To find out more…
Follow link to the online
questionnaire &
full study details:
http://tinyurl.com/monasheducation
Or contact the researcher:
Susan.Wade@monash.edu

Felt part of a
community
Increased
self-worth
Explained
difference
If only I had it
earlier
Useful for selfadvocacy
© Susan Wade 2012
Advantages
Disadvantages
Defines the
person
Does not
guarantee help
Possible low
expectations
Source: Unpublished data from my PhD study
“Abilities, Achievement & the Autism Spectrum” under the supervision
of Dr. Leonie Kronborg, Faculty of Education, Monash University

Parent of a
10yo boy
with
Asperger’s.
USA
© Susan Wade 2012
“My child has always known of his diagnosis.
We have explained that it just like us being
Hispanic, it is a large part of who you are as
a person but it is not all of who you are. It
brings with it some good things and some
bad things. Some people will judge you by it
which is unfair but just how things go. It is not
an excuse for not trying your best. Most
people have difficulty thinking outside of
their box but he can not only think outside
the box but travel in his own Tardis [Dr. Who
time machine] and explore the world and
be brilliant.”
Source: Unpublished data from my PhD study
“Abilities, Achievement & the Autism Spectrum” under the supervision
of Dr. Leonie Kronborg, Faculty of Education, Monash University

© Susan Wade 2012
Image: Wade, S. (2012)

© Susan Wade 2012
Help with weaker
areas
Advocacy &
education
Building on
strengths
Image: Wade, S. (2010)

� Introduction
� Before: Preparing to ‘share’
� During: Sharing the diagnosis
� After: Building understanding
� Reflections on the process
� Questions
© Susan Wade 2012

© Susan Wade 2012
Image: Wade, S. (2012)
Talking, writing, exercise and TIME!

Ross W.
Greene, PhD
(The Explosive
Child, p. 88)
© Susan Wade 2012
“... If you haven’t already, you may have to
come to grips with the fact that your child a
little different. Yours is not a ‘business as
usual’ child. So if you were hoping for the
standard, easygoing child, it’s not in the
cards.”
“...Luckily, the definition of good parenting
(and good teaching) is ‘being responsive to
the hand you’ve been dealt.’”

© Susan Wade 2012
Image: Wade, S. (2012)
Reading & listening

Image: Wade, S. (2011)
Age, ‘need-to-know’, & ability to understand

© Susan Wade 2012
Image: Wade, S. (2012)
Self-knowledge, self-descriptive language

Individual differences, strengths & weaknesses
© Susan Wade 2012
Image: Wade, S. (2012)

© Susan Wade 2012
Image: Wade, S. (2012)
Personalised, interactive & fun

� Introduction
� Before: Preparing to ‘share’
� During: Sharing the diagnosis
� After: Building understanding
� Reflections on the process
� Questions
© Susan Wade 2012

‘Black & white’
Likes routines thinker to
Liked be the reading same
transport books at
kinder
‘Shades of grey’
Happy with
thinker
changes
Liked to pretend routines play
at kinder
Statements developed in part from the Autism Quotient (AQ-Child) (Auyeung, Baron-Cohen, Wheelwright & Allison, 2008)
© Susan Wade 2012
Appeals to motivation & strengths

Child ‘paints a picture’ of themselves, a ‘pattern’ is revealed
© Susan Wade 2012

© Susan Wade 2012
Adapted from the ‘Attribute s Activity’ (Attwood, 2006)

© Susan Wade 2012
Image: Wade, S. (2012)
Hoopman, K. (2006). All cats have Asperger syndrome.

What we did
What we said
© Susan Wade 2012
Words we
prefer to use
Words we
prefer not to
use
Providing a summary to key people…

© Susan Wade 2012
enquiries@disclosingaspergers.com

� Introduction
� Before: Preparing to ‘share’
� During: Sharing the diagnosis
� After: Building understanding
� Reflections on the process
� Questions
© Susan Wade 2012

Initial
talk
© Susan Wade 2012
TV
Characters
Strengths
Problems
Disability /
Difference
Child initiated, resources ready

weennee. (2010) Dibo and Dragon birthday party: Flickr.
http://creativecommons.org/licenses/by-nc-nd/2.0/deed.en
© Susan Wade 2012
� Very smart!
� Likes telling people what he knows.
� Loves science experiments.
� Hates being out in bad weather.
� Conquered a fear through
learning
about something.
Cro from ‘Dibo the Gift Dragon’…

� called
‘Professor’
C-3PO
�Always telling
people answers
�Very smart
�Worries a lot!
� Jumps to conclusions
� Misinterprets what others say
© Susan Wade 2012
Sio Bibble
Image: Wade, S. (2012)
Rune Hakko
� Grumpy
when
things don’t
go to plan
� Likes to
follow rules
Star Wars characters…

© Susan Wade 2012
Image: Wade, S. (2012)
Disability & difference

� Introduction
� Before: Preparing to ‘share’
� During: Sharing the diagnosis
� After: Building understanding
� Reflections on the process
� Questions
© Susan Wade 2012

Timing, individualised, positive focus, & preparation
© Susan Wade 2012
Image: Wade, S. (2012)

© Susan Wade 2012
Image: Wade, S. (2012)
Refine ‘See Me’ activity, discuss complexity

© Susan Wade 2012
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+

© Susan Wade 2012

Attwood, T. (2006). The complete guide to Asperger's syndrome. London: Jessica Kingsley Publishers.
Auyeung, B., Baron-Cohen, S., Wheelwright, S., & Allison, C. (2008). The Autism Spectrum Quotient: Children’s Version (AQ-Child).
Journal of Autism and Developmental Disorders, 38(7), 1230-1240. doi: 10.1007/s10803-007-0504-z
Baron-Cohen, S. (2000). Is Asperger's syndrome/High-Functioning Autism necessarily a disability? , 1-13. Retrieved from
http://www.geocities.com/CapitolHill/7138/lobby/disability.htm
Eisenmajer, R. (2006). Imagine having Asperger's Syndrome - a first consultation. Melbourne: PerformArts Pty Ltd.
Greene, R. W. (2005). The Explosive Child: A new approach for understanding and parenting easily frustrated, chronically inflexible
children. New York, Harper.
Hoopman, K. (2006). All cats have Asperger syndrome. London: Jessica Kingsley Publishers.
Kerr, K. (2005). Sharing the diagnosis. The Spectrum, 1(4), 4-8.
Lawson, W. (2008). Concepts of normality: The autistic and typical spectrum. London: Jessica Kingsley Publishers.
Shore, S. (Ed.). (2004). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism
Asperger Publishing Co.
Whitaker, P. (2006). 'Why's it all so difficult?' Sharing the diagnosis with the young person. In D. Murray (Ed.), Coming out Asperger:
Diagnosis, disclosure and self-confidence (pp. 125-142). London: Jessica Kingsley Publishers.
I would like to acknowledge the outstanding professional support that
Dr. Richard Eisenmajer has provided our family as we have navigated our way
from the point of diagnosis. His insightful and empathetic understanding of the
autism spectrum has helped our family immeasurably.
© Susan Wade 2012

© Susan Wade 2012
Susan.Wade@monash.edu