beyond autism rethinking the label What autism means

beyond autism: re-thinking the label

What autism means to me: a mother’s view Katherine Runswick-Cole K. Runswick-Cole@mmu. ac. uk 9 th November, 2013 2

Autism: The Limits of Diagnosis • Sami Timimi

Bleuler 1911 Kanner 1943 1944 Asperger

Creating the spectrum Lorna Wing Michael Rutter

Genetic disorder? Assumed high heritability based on twin studies “No major genome scan has produced significant and reproducible results… no candidate gene from a genome scan has shown a reproducible and statistically significant association with autism. . . no candidate gene that has inspired multiple studies has shown a robust and reproducible connection to autism” (Blaxill, 2005). “Many research teams have searched for genes that may be involved. They haven’t turned up any prime candidates yet, only dozens, maybe hundreds of bit players” (Hughes, 2012) “First Genome Wide Association Studies (GWAS) on autism implicated two regions with mild effects. . subsequent GWAS failed to turn up any parts of the genome with statistical significance” (Williams, 2012)

Pictures of brains melt your intelligence Lack of consistently replicated findings. e. g. studies documented an increase in cerebellar volume, smaller than average, and no significant differences. sample heterogeneity (such differences reflecting IQ differences) regular problem. Technical challenges: Brain connectivity theory replicated by head movement. “Until its biological basis is found, any attempts to use brain imaging to diagnose autism will be futile” Lange (2012)

Outcome for autism The same behaviourally defined syndrome (ASD) is applied to residents of institutions with little hope of living independently and has been suggested for men who have achieved greatness (such as Mozart, Van Gogh, Edison, Darwin, Einstein). “Recent prospective studies - a substantial proportion of subjects (24%) having a “very good” outcome. ” Szatmari (2011) “ the results substantiate the possibility of Optimal Outcome from autism spectrum disorders and demonstrate an overall level of functioning within normal limits for this group” (Fein et al, 2013)

Questions of Treatment Graham Collins

Signs and Symptoms Tests Diagnosis Treatment

Signs and Symptoms Problems in social relationships Problems in communication Intense interests/lack of imagination Tests DISCO ADOS/ADIR Theory of Mind Executive dysfunction Diagnosis Autistic Spectrum Disorder Treatment ? ?

Special Treatments? • TEACCH: Individualised treatment, structured teaching, skill enhancement, CBT • PECS: “primary benefit being a means for communication by children and adults who have little or no speech due to autism or OTHER DEVELOPMENTAL DISABILITIES. ” • ABA: widely used since the 1960 s for people with learning disabilities and other populations

Community Psychology…. . Tries to… understand & help… ‘people in the context of the social settings and systems of which they are part or which influence them’ (Orford, 1992).

From the 19 th and 20 th century, to the… 21 st From the factory, to the shopping centre

Changes in Western Society – late 20 th to early 21 st century…neo-liberalism… • ‘Emotional Intelligence’ • Self-consciousness – as moral injunction and as a norm. • Widespread belief that we are self-creating – ‘heroic individuals’ • Employment: call centre, versus factory floor

Consumer Capitalist lifestyle: favours people who fit the profile of the emerging diagnosis of ‘Neurologically Typical Syndrome’ • A neurobiological disorder. What Is NTS? • Preoccupation with social concerns, delusions of superiority, and obsession with conformity. • NT individuals often assume that their experience of the world is the only one / the only correct one. • Find it difficult to be alone. • When in groups NTs are socially and behaviorally rigid. • Frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals intended to maintain group identity. • NTs find it hard to communicate directly. • They have a much higher incidence of lying, as compared to persons on the autistic spectrum.

Getting to grips with the environment as key source of distress: the ‘Power Map’

Buying and Selling Autism: The Label as Commodity Dr. Rebecca Mallett: r. mallett@shu. ac. uk