Can the world afford autistic spectrum disorder?

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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
• Lets improve services for autistic adults
• 13 May 2009 Port Vale FC

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Published 15 April 2009. Jessica Kingsley Amazon
price 13.59
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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)

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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

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• 60 with AS/HFA had been diagnosed
• Mean age 24.3 years
• 7.6 men to 1 woman
• 52 with AS/HFA had no previous diagnosis
• Mean age 35.2 years
• 2.1 men 1 woman

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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

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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.)
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Another use of affordance to make room
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The psychologist, J J Gibson, who invented the
term affordance
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The argument

1. the world, the social world, affords
   neurotypicals
2. the social world does not afford people with ASD.
   Why?
3. The social world is interconnected. People are
   joined together by an interbrain
4. People with an ASD have a low bandwidth
   interbrain connection, and so are not afforded
5. Not being afforded leads to disadvantage
6. But the future may lie with ASD

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Knowing about the world using non-verbal cues

• Who is being shot?
• Terrorists or partisans?

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The interbrain

• Extended cognition
• Automatic processing
• Reflexive vs. reflective processing
• The borg

Jerry Ryan, 7 of 9 StarTrek
Neurotypical
Aspie
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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 Kosinsk , itself
based on what has been claimed is a fictive
war-time experience of the author in Poland
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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

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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

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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)

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Consequences of being off the interbrainPositive
s
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

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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

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anxiety

• "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

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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 gt16
• Progressive social withdrawal often attributed to
  schizophrenia
• Late adolescence bipolar disorder
• Brief cycloid psychoses
• Non-psychotic hallucinoses
• Aet gt18 Catatonia
• Aet gt25 Paranoid states
• Aet gt35 Social withdrawal, isolation,
  relationship disrepair

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Empathy failure

• Affective empathy
• Failure of contagion
• Cognitive empathy
• Theory theory of mind
• Simulation theory of mind
• Denial of empathy by others

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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

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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

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• 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

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Counselling

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

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New statutory developments

• Private member Autism bill of Cheryl Gillan MP
  at committee stage

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DoH and Department of Children, Schools and
Families http//www.dh.gov.uk/en/SocialCare/Deliv
eringadultsocialcare/DH_095172

• Improving the quality of services provided to
  autistic children and their families
• Children and Young Peoples Plans
• increased funding to the Autism Education Trust
  (NAS, the TreeHouse Trust, the Council for
  Disabled Children)

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DoH and Department of Children, Schools and
Families http//www.dh.gov.uk/en/SocialCare/Deliv
eringadultsocialcare/DH_095172

• Training and support in mainstream education to
  raise awareness of autism among teachers and
  early years practitioners.

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DoH and Department of Children, Schools and
Families http//www.dh.gov.uk/en/SocialCare/Deliv
eringadultsocialcare/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

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DoH and Department of Children, Schools and
Families http//www.dh.gov.uk/en/SocialCare/Deliv
eringadultsocialcare/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

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lhomme est né libre, et partout il est dans les
fers. J.-J. Rousseau
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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

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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