1. Michelle O’reilly and Khalid Karim
Is autism a desired diagnosis? Implications for the normal/abnormal dichotomy
Michelle O’reilly and Khalid Karim

2. Outline
We demonstrate how families and individuals construct their understanding of ASD and how they construct the boundary between disability and ability.
Focus group data
First assessment data

3. Autism Spectrum Disorder/condition
Children with autism versus autistic children (NAS)
DSM-5 – impairment
The diagnostic process of ASD can create strong emotions
Difficult to access
Can take a long time
Often described as a ‘battle’
Can be required a number of times (especially in girls)
Multidisciplinary
Actively sought by families (in some cases)

4. BBC news
“Proposals to reduce the number of children being diagnosed with autism are being considered by NHS commissioners in south-west London.”

5. Methods Focus group data Child assessment data (CAMHS)
Stakeholders: Parents, researchers, CAMHS managers, Autistic individuals, practitioners
Child assessment data (CAMHS)
First assessments, video-recorded, 90 minutes, two clinicians
Qualitative Analysis
Discourse analysis
Conversation analysis

6. Findings Parents typically build a case for their child having ASD
They offer up a candidate diagnosis
Mum → an (0.40) it just it j- it just pops out at me as as being very Aspergecy
Mum: you know she’s felt ↓Mandy’s autistic ↓for quite a while ↓now
They construct the child’s problem
Mum: he had this obsession with (0.77) needing (0.74) what was it five p↓ens three ↓pencils
Mum: but he gets very fru↓strated when he’s out playing with other children

7. Findings continued Practitioner responses:
ASD probable outcome – short and straightforward delivery
Prac: I think you’re right I think you know he does qualify for an autism
Mum: Yeah
Prac: diagnosis I mean there’s no doubt about it

8. ASD not likely outcome:
More challenging to deliver – trouble indicated
Prac 1 from the Asperger point of ↓view er (0.24) (I mean it) children w who are on on (0.52) have (.) um sort of Autistic like features (0.98) they really struggle in terms of social interaction (0.60) um: (.) they have very narrow interests (0.45) the:y um: (0.25) they have >communication difficulties an< (0.91) talking to him seeing him talking to you it doesn’t indicate any of that (0.49) he’s very ↓sociable he likes to interact he enjoy interaction he enjoy attention (0.59)er: he’s he’s intelligent (0.49) er in terms of you ↓know (0.68) how he can get all these things =he doesn’t have problems making friends (0.44) which goes quite against the diag↓nosis so I think we there is no (h) developmentally e e it’s a neurodevelopmental con↓dition and should be present (0.30) right from a very young age from three onwards an I couldn’t pick up anything (0.54) from (0.72) what you told m[e]
Mum [um]

9. Focus group data Lay perceptions =
L: Yeah the dif[ferent t[ypes of autism…… >Not that everyone’s got a Rainman or <Einstein
Recognition of the wide variation
An’ what (.) the thing is you’re actually accounting (.) va::: stly different individual::s and trying t’ categorise them as one group when actually they can be quite different

10. Disability or ability? Autism is not a disability
↑autism itself I’m a great believer that ↑autism itself actually isn’t a disability in any way at a::ll (.) in fact there are many areas where I would argue that my autism >is a s↑trength<
Versus – autism is a disability
J: Well I’m sorry Pete >I kinda disagree< because (0.6) wouldn’t you say that (0.4) <some of th::e> the like from the <triage> of autism (0.2) > the symptoms< (.) ↑a::re a symptom of the condition which is autism
P: ↑Right
J: So it is a disability

11. Summary and implications
ASD is a broadly defined socially constructed concept
ASD Now has increased public awareness – has in some ways become a sought after diagnosis for some parents to explain the child and their behaviour (desiring the label) - different to physical health labels (e.g. cancer).
Clinical practitioners have to make a judgement on what constitutes ‘normal’.
The concept of what is normal or abnormal, even amongst those who have the diagnosis (or a child with the diagnosis) appears to create some tension. Two individuals with the same label can be fundamentally different.
The label therefore becomes less meaningful.

12. P: Well I wouldn’t want to be like you lot Thanks