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

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

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)

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

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

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

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

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]

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

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

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.

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