The Meaning of Diagnosis for Parents of Children with Autistic Spectrum Disorder

1
The Meaning of Diagnosis for Parents of Children
with Autistic Spectrum Disorder

• Emily Nobes, Trainee Clinical Psychologist
• Oxford Doctoral Course in Clinical Psychology
• emily.nobes_at_hmc.ox.ac.uk
• Supervised by Rob White, Consultant Clinical
  Psychologist
• Department of Child and Adolescent Psychiatry

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Autistic Spectrum Disorders

• Range of impairments
• social interaction
• communication
• restricted interests
• Prevalence 60 per 10,000 under 8 yrs (MRC, 2001)

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• Increased recognition of the importance of early
  identification of ASD
• National Autism Plan for Children (NAS, 2003)
• Diagnosis is potentially a difficult time for
  families
• Research has examined parental satisfaction with
  diagnostic services, with disparate findings
  (e.g.Sloper Turner, 1993, Hasnat Graves,
  2000).
• Small amount of research has interviewed parents
  post diagnosis and found a range of initial
  reactions (e.g Baird et al., 2001, Mansell and
  Morris, 2004).

4
Local picture

• Social Communication Difficulties Service
• set up in 2003
• Multi disciplinary assessment planning
• for pre school children with communication
• difficulties.

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Aims

• To conduct a small piece qualitative
• research examining parents experiences
• of diagnosis.

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Method

• Invited everyone who had been through the service
  in the previous twelve months and who fulfilled
  the inclusion criteria to take part.
• Five mothers agreed.
• All had a son with ASD.
• They were visited at home and a short 30 minute
  semi structured interview took place.

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Interview schedule

• Tell me a little bit about your experience of
• finding out that your child was on the
• autistic spectrum.
• What were you expecting to hear?
• What sense were you able to make of this
• information?
• Did you agree with what you were told?
• Was knowing that your child fell on the autistic
  spectrum important to you? In what way?

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• What has this information meant to you?
• Has this information changed anything for your
  family?
• Has it altered the way you make sense of your
  childs behaviour?
• Has it gained you access to any extra services?
• Have you gained any extra support?

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Interpretative phenomenological analysis

• Interviews were transcribed and analysed using
  IPA.
• IPA is a qualitative methodology.

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Superordinate Themes

• Reasoning with difference
• A mixture of feelings surrounding diagnosis
• Searching for sense
• Trying to hold on to normality
• Experiencing loss

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1. Reasoning with difference

• Noticing difference
• PatriciaJamies speech was a little bit
  delayed
• Normalising and accepting difference
• Maya boys usually talk quite late
• Difference being reaffirmed
• Acknowledging difference as evidence of a problem

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2. A mixture of feelings surrounding diagnosis

• Relief vs denial and disbelief
• Helen it just helps because sometimes you
• feel like youre going a bit crazy
• it was sort of oh God, what have I done?
• Uncertainty about the future
• Hanging on to hope
• Sally you read things like the Son Rise
• Programme and you just think that oh some
• children can be cured of it

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3. Searching for sense

• Making sense
• Seeking clarification
• Sally the more you read about it and the more
  you look for the signs, the more you see the
  signs
• Explaining behaviour

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4. Trying to hold on to normality

• Getting on with life
• Helen he does everything other children do
• Annie a trip to the supermarket it not like a
  normal trip
• Accepting difference as normal

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5. Experiencing loss

• Loss of normality
• Helen what I miss which I had at the other
• school, is meeting in the playground and mums
  talking
• Loss of normal motherhood
• Sally what you have a baby you have so much
• hope for them
• Patricia I felt that as a mum you should know
  naturally what sort of things you need to do to
  help your child But with Jamie it was like
  hitting a brick wall

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Experiencing Loss cont.

• Feeling lost / abandoned
• Maya actually I dont know what to do
• Sally I feel a bit like help, I need some
  help

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Discussion

• Dynamic process pre and post diagnosis
• Pendulum of thoughts about difference, matched by
  feelings surrounding the diagnosis.
• Range of feelings experienced simultaneously.
• Finding meaning

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Discussion cont.

• Holding on to normality and accepting difference
• Multiple experiences of loss

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Discussion cont.

• Critique of methodology
• Small sample but commensurate with
  recommendations
• Not a representative study but in depth analysis
  of experience

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Discussion cont.

• Implications
• Professionals need to be aware of these themes
• balance info sharing with validation of
• role as a mother
• ongoing need for support post diagnosis.

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The Meaning of Diagnosis for Parents of Children
with Autistic Spectrum Disorder

• Emily Nobes, Trainee Clinical Psychologist
• Oxford Doctoral Course in Clinical Psychology
• emily.nobes_at_hmc.ox.ac.uk
• Supervised by Rob White, Consultant Clinical
  Psychologist
• Department of Child and Adolescent Psychiatry

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References
Baird G, Chapman T, Cox A, Baron-Cohen S,
Swettenham J, Wheelwright S and Drew A. (2001)
Screening and surveillance for autism and
pervasive developmental disorders. Archives of
Disease in Childhood . 84 468-475. Hasnat MJ
and Graves P. (2000). Disclosure of developmental
disability A study of parent satisfaction and
the determinants of satisfaction. Journal of
Paediatic Child Health. 36 3235.   Howlin, P.
and Moore, A. (1997) Diagnosis in autism a
survey of over 1200 parents. Autism the
International Journal of Research and Practice .
1, 135-162.   NAS (2003) National Autism Plan for
Children (NAPC) plan for identification,
assessment, diagnosis and access to early
interventions for preschool and primary school
aged children with autism spectrum disorders.
London National Autistic Society.
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Mansell, W. and Morris, K. (2004) A survey of
parents reactions to the diagnosis of an
autistic spectrum disorder by a local service.
Autism. 8, 4, 387-407. Medical Research Council
(2001). Review of autism epidemiology and causes.
www.mrc.ac.uk   Midence, K. and ONeill, M.
(1999). The experience of parents in the
diagnosis of autism. Autism. 3, 3, 273-285.
Smith, J.A., Jarman, M. and Osborn, M. (1999)
Doing Interpretative phenomenological analysis.
In M. Murray and K. Chamberlain (eds)
Qualitative Health Psychology Theories and
Methods. London Sage.