Can the world afford autistic spectrum disorder?

1. Can the world afford autistic spectrum disorder? Professor Digby Tantam Clinical Professor of Psychotherapy University of Sheffield Honorary Senior Visiting Research Fellow, University of Cambridge Staffordshire Adults Autistic Society Conference “Let’s improve services for autistic adults” 13 May 2009 Port Vale FC

2. Published 15 April 2009. Jessica Kingsley Amazon price £13.59

3. Is this about the cost of ASD? • medical expenditures for individuals with an ASD were 4.1-6.2 times greater than for those without an ASD (Shimanukoro et al, 2007). • The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs (Ganz, 2007) • Average cost per year (including benefits) 42,500 Euros (Jarbrink et al, 2007)

4. Some context: cost of Iraq war in 2007 to UK • £5 billion per month, or £2000 per second • So ASD is not likely to break the bank as has the Iraq war (literally) • But does depend on prevalence of ASD

5. Bullying pupils with AS NAS international conference

6. Possible explanations • Spurious • Selection bias • Reduced life expectancy • Recovery (cf. AHDH) • Maturation of brain • Reduction of social stress • AS may be an episodically manifested illness, like sickle cell trait • Schooling may be unusually social demanding Bullying pupils with AS NAS international conference

7. Correlations over time of spontaneous wavelets provide information about connectivity (Meunier, D, Achard, S, Morcom, A, Bullmore, E Age-related changes in modular organization of human brain functional networks. Neuroimage 2009; 44: 715-23.)

8. Another use of affordance: to make room

9. The psychologist, J J Gibson, who invented the term ‘affordance’

10. The argument • the world, the social world, affords neurotypicals • the social world does not afford people with ASD. Why? • The social world is interconnected. People are joined together by an ‘interbrain’ • People with an ASD have a low bandwidth interbrain connection, and so are not ‘afforded’ • Not being afforded leads to disadvantage • But the future may lie with ASD

11. Knowing about the world using non-verbal cues Who is being shot? Terrorists or partisans? Bullying of mainstream pupils with Asperger syndrome

12. The interbrain • Extended cognition • Automatic processing • Reflexive vs. reflective processing • ‘The borg’ Jerry Ryan, 7 of 9 StarTrek Neurotypical Aspie National context in developing services

13. Consequences of bullying • Passive failure to be included • Reduced use of community resources (social exclusion) • Experience of being unwanted/marginalized • Active rejection , blaming, scapegoating • Stigma as a means of keeping threatening Other at a distance • Bullying Painted Bird by Edward Gafford, inspired by the novel ‘Painted Bird’ by Jerzy Kosińsk , itself based on what has been claimed is a fictive war-time experience of the author in Poland

14. Who bullies and why? Evidence is limited, but do bullies do it for the rest of us? • On behalf of a social group • Bullies are highly regarded, but not popular • Bullies’ in-group status may be tenuous • Victims are different • Victims may be more aggressive than non-victims, and are perceived, perhaps as more threatening Bullying of mainstream pupils with Asperger syndrome

15. The limitless potential of social control by shaming • A particularly wide ranging tool kit • Readiness to consider the most intense emotional issues and in the next moment, the most practical and cognitive ones • Having a clear grasp of the individual in front of you, not just in life experience, or temperament, but in cognitive abilities • Be aware of shame and shaming Bullying of mainstream pupils with Asperger syndrome

16. Does social exclusion lead to functional movement impairment Is there a difference in the amount of physical activity of pupils with AS compared to others? • Mean number of steps per hour: AS group = 902, control group = 1312 (t = -2.645, p = .027)

17. Consequences of being off the interbrain:Positives “Can society afford people with Asperger syndrome?” • People with Asperger syndrome may get infected by fewer informational viruses • They are often unusually good at interfacing with machines especially digital technology • Fairness is a passion • They are not in chains

18. Social exclusionWhere were people with AS in Sheffield? • Most living at home, even above 30. • Most had difficulties coping with changes in everyday environments • Only 1 in 5 in paid work/ 1 in 5 doing nothing outside the house • Difficulties moving between places (for example using public transport) • Most common places frequented were libraries and cinemas Bullying pupils with AS NAS international conference

19. "Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights. There seems to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the pattern behind everything." A person with Autism: quoted in Better Services for People with an Autistic Spectrum Disorder, Nov 2006, DoH anxiety

20. Timing of psychological disorders associated with AS(many of these disorders probably greater in more able group) • Aet 11-13 Surge of anxiety-related problems including OCD, dysmorphophobia, panic disorder • Aet 16-18 Secondary depression, social phobia • Aet >16 • Progressive social withdrawal often attributed to schizophrenia • Late adolescence bipolar disorder • Brief ‘cycloid’ psychoses • Non-psychotic hallucinoses • Aet >18 ‘Catatonia’ • Aet >25 Paranoid states • Aet >35 Social withdrawal, isolation, relationship disrepair National context in developing services

21. Empathy failure • Affective empathy • Failure of contagion • Cognitive empathy • Theory theory of mind • Simulation theory of mind • Denial of empathy by others Psychotherapy of people with AS Biejing WCP

22. What effect does a lack of empathy have? • Reduced persuasiveness • Reduced influencing power • Readiness to sacrifice self interest to gain the interest of others • In men, may lead to criminal damage, offending behaviour • In women, may lead to many abusive sexual relationships • Resort to coercive persuasion • Withdrawal

23. Other problems that begin in adolescence • Sexual and relationship disorders • Stalking • Repeated abuse, leading to PTSD • Self injury • Suicide risk probably not elevated • Substance misuse • Especially in later life • Practical difficulties • Impulsivity • Dysexecutive syndrome

24. Different methods of training/ psychotherapy • Games and Robots • Virtual world • Autistic Liberation Front • Asperger Awareness • Autistic • Aspies For Freedom counselling/ second life • Self-help e.g. ALF island in second life •  Informal or irregular email contact • Advocacy in system • Peer and social groups Psychotherapy of people with AS Biejing WCP

25. Counselling • Individual • Couple • Family • Systems • But reduced value of group work because of complexities of processing so much nonverbal information

26. New statutory developments • Private member Autism bill of Cheryl Gillan MP at committee stage National context in developing services

27. DoH and Department of Children, Schools and Families http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/DH_095172 • Improving the quality of services provided to autistic children and their families • Children and Young People’s Plans • increased funding to the Autism Education Trust (NAS, the TreeHouse Trust, the Council for Disabled Children)

28. DoH and Department of Children, Schools and Families http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/DH_095172 • Training and support in mainstream education to raise awareness of autism among teachers and early years practitioners.

29. DoH and Department of Children, Schools and Families http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/DH_095172 • Better support for young people with autism in the transition to adulthood. Wider policy support and investment in children with specialist or complex needs that will also help children with autism, including: • CAMHS, • services for children with speech, language and communication difficulties • et al

30. DoH and Department of Children, Schools and Families http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/DH_095172 • Training and support in mainstream education to raise awareness of autism among teachers and early years practitioners. • Improving the quality of services provided to adults with autism through: • a process to ensure local authorities are able to collect information about the needs of autistic adults in their area • prevalence studies • Commissioning Guidance for the NHS and local authorities

31. “l’hommeestnélibre, et partoutilestdans les fers. J.-J. Rousseau Bullying of mainstream pupils with Asperger syndrome

32. Sooner or later we all realize we are limited • People with AS often come up across this problem in transition, long before most others are made to face it • Many deal with it by courage, and by humility that is exemplary • They realize before the rest of us that our limits are what form us as well as restrict us • Transition is when this realization first strikes many

33. Is Asperger syndrome the future? Owen Thor Walker apointed to TelstraClear, who previously wrote code enabling a hacker group to steal £13.9M from bank accounts Bram Cohen, founder BitTorrent, and self diagnosed Aspie