“I don’t know if I have it or not”
Making sense of the diagnosis
Sally Payne – Coventry University, Heart of England
Foundation NHS Trust, Dyspraxia Foundation
Dr G Ward, Dr A Turner, C Bark - Coventry University
Dr M C Taylor - Bournemouth University
The Plan
• About the study
• Findings
• What can we learn?
Reasons for the study…
• Professional curiosity
– What happens to
children as they grow
older?
• Limited research
– Focus on children,
some on adults, very
little on adolescence
• Giving young people a
voice
– Proxy vs. self-reports
What matters to teenagers with
DCD?
• Qualitative study, ethical approval from
Coventry University
• Carried out over course of 3 years
• Interviews with teenagers aged 13, 14 and 15
years
• Interpretative Phenomenological Analysis
(IPA) (Smith et al 2009)
– In which the researcher attempts to make sense of how
participants make sense of their experiences
Participants
Billy
White British
Adam
Black Caribbean
Dyslexia
Callum
White/Asian
David
White British
Aspergers
Eden
White British
ADHD
Freya
White British
Findings at 13 years of age
6 Superordinate themes
•
•
•
•
Doing things the hard way
The social impact of dyspraxia
The emotional impact of living with dyspraxia
“I don’t know if I have it or not” – making sense
of the condition
• I’m just a normal kid
• Supports – making things better or making things
worse?
Making sense of the diagnosis:
Disclosure delay
I knew I was different from most other people but I didn’t
really notice, I didn’t at that point know what dyspraxia
meant (Billy)
My mum told the teacher. I found out on the parents evening
or something like that (Eden)
Making sense of the diagnosis:
Disclosure delay
• Knowing but not knowing
• Awareness of diagnosis emerged over time
• Others knew before themselves
Making sense of the diagnosis:
Confusion and uncertainty
You know what I don’t get? I can play out all day, like Play
Station and stuff like that, but I don’t know if that’s part of the
dyspraxia. Like if I couldn’t then that would be part of the
dyspraxia. (David)
The occupational therapist said “Can you ride a bike?” and I
said “Yeah”. Cos he said people with dyspraxia can’t really
ride it as much. (David)
I didn’t at that point know what dyspraxia meant and I’m still
not completely sure. (Billy)
Making sense of the diagnosis:
Confusion and uncertainty
• Variation in presentation of DCD doesn’t
help
• Professionals don’t help by thinking out
loud
• Terminology probably doesn’t help!
Making sense of the diagnosis:
Mystery and isolation of being different
I would like to know whether it’s just me
that’s got these certain problems or I’m not
on my own really. Because I’d rather not
think of myself as weird but almost special
sometimes, and I think it, it would definitely
be nice to know that I’m not the only one that
does certain things. (Billy)
Making sense of the diagnosis:
Mystery and isolation of being different
I would like to know whether it’s just me
that’s got these certain problems or I’m not
on my own really. Because I’d rather not
think of myself as weird but almost special
sometimes, and I think it, it would definitely
be nice to know that I’m not the only one that
does certain things. (Billy)
Making sense of the diagnosis:
Mystery and isolation of being different
• Dyspraxia/DCD as an invisible condition
– Individuals work hard to cover up their
difficulties and avoid stigmatization
• Sense of mystery affects development of
self-concept and self-worth
• Implications for emotional and social wellbeing
Making sense of the diagnosis:
Difficulty of disclosing to others
• I kind of explained. It was kind of hard to explain
since I don’t really know what it is. (Callum)
• They thought like I’d made it up you know? Cos
they don’t really know what it is. (Callum)
• Someone thought it was contagious at some point
and decided to keep away from me until I showed
them the book and went “Read it!” (Eden)
Making sense of the diagnosis:
Difficulty of disclosing to others
• Limited understanding of the condition
makes it difficult to articulate it to others
• Fear/experience of difficulties being
trivialised may affect decision to disclose
• Sense of frustration and anger when
others don’t understand
The exception
• Freya’s difficulties with speech were identified aged 2
years
• Received intervention & support from an early age
• I don’t really think most people know (about dyspraxia)
but they don’t really notice so it’s not anything big. (Freya)
• What are the factors that contribute to resilience &
acceptance of dyspraxia as part of the self?
– Gender?
– Time since diagnosis?
What does this study tell us?
• DCD/Dyspraxia continues to affect all areas of life
into adolescence
• Teenagers are willing and able to articulate
thoughts about their condition and what it means
to them
• IPA is a useful way to make sense of the
experience of teenagers living with dyspraxia
• Gender & time may have an effect on the process
of integrating the diagnosis into the sense of self.
Implications for practice
• Clear information for
teenagers
• When should diagnosis be
discussed?
• Raise public awareness
• Social media and
innovative technologies
Thank you for listening!
• Questions and comments are very welcome.