“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

AdamBlack CaribbeanDyslexia

Billy White British

CallumWhite/Asian

DavidWhite BritishAspergers

EdenWhite BritishADHD 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 well-being

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.