The document summarizes research on emotional and mental health issues for individuals with autism spectrum disorder (ASD) as they transition into adulthood. It finds that adolescents and adults with ASD often experience anxiety, depression, suicidal thoughts, and difficulty with social functioning. Studies show high rates of bullying, victimization, and social isolation. As adults, many individuals with ASD live at home with parents and have difficulty living independently or maintaining employment due to lack of support. Safe spaces for social interaction are limited, and emotional problems can worsen over time without proper support structures.

1. Overview
Autism spectrum disorder: a lifespan perspective
To be published, Jessica Kingsley, 2010
Can the world afford autistic spectrum disorder?
Published Jessica Kingsley, 2009
www. dilemmas.org
Digby Tantam,
Universities of Cambridge and Sheffield
Dilemma Consultancy

2. Theme analysis of 5 websites of people
with AS/ HFA
• sense of alienation
• sense of frustration
• depression as a central emotion
• a pervasive sense of fear or apprehension

3. Green et al compared 20 adolescent men with
AS with 20 with conduct problems
• AS group
• Severely impaired practical social functioning
• Anxiety
• Obsessional disorders
• Both groups had
• Depression
• Suicidal ideation
• Tempers and defiance

4. Outstanding areas for concern:
Sheffield survey
• Reduction of available support in adulthood
• Lack of paid work (36%, 6% of whom
supported)
• Lack of independence
• 60% living with parents
• 21% living independently
• 56% thought they could be more independent with
support
• Victimization 90% said they had been bullied
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5. Emotional problems in adolescents and
adults with Asperger syndrome
(findings from Sheffield survey)
• Self-harm: thoughts 50%, actual 11%
• Violence: threats 83%, actual 34%
• Bullied 90%, 30% currently (includes adults)
• Majority have anxiety-related disorder

6. Themes in adulthood
Ryan, S, Räisänen, U "It's like you are just a spectator in this thing": Experiencing social life the [`]aspie' way.
Emotion, Space and Society 2008; 1: 135-43.
• feeling different
• trying to fit in
• safe spaces
• uncommon sense

7. Contributors
• Sheffield survey
• Myles Balfe
• Ting Chen
24 November 2009
• Mike Campbell • Bullying project
• submitted to Autism • Paul Naylor
• Jenny Wainscot
Parents, teachers, and people • Jenna Williams
with Asperger syndrome • 15 medical students
Sheffield Asperger Parents
• International Journal of
Action Group
Psychology
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8. An artefact of ascertainment?
CHANGING PREVALENCE OF
ASD

9. From Bandolier

10. Data from the US National Survey of
Children’s Health (from
www.leftbrainrightbrain.co.uk)

11. Rising prevalence
• Kaye,J.A., del Mar,M., &
Jick,H. (2001) Mumps,
measles, and rubella
vaccine and the incidence
of autism recorded by
general practitioners: a
time trend analysis. BMJ,
322, 460-463.
• Prevalence rate in children
probably 1 in 150
2009
November
24
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12. Brookdale care conference, London

13. MMR vaccination has not caused ASD—
in fact there is no known cause for most
causes, although genes must play a part
• The risk of autism was similar in vaccinated
and unvaccinated children
• Onset did not occur soon after vaccination
• There is no sub-type of ASD that could be
attributed to MMR vaccination
• Madsen, KM, Hviid, A, Vestergaard, M, Schendel, D, Wohlfahrt, J, Thorsen, P, Olsen, J, Melbye, M A
Population-Based Study of Measles, Mumps, and Rubella Vaccination and Autism. N Engl J Med 2002;
347: 1477-82.

14. Being disconnected from the interbrain
FEELING DIFFERENT

16. Hunyuan hanging temple, Mt. Hengshan, Shanxi

17. The interbrain
 Extended cognition
 Automatic processing
Jerry Ryan, 7 of 9 StarTrek
 Reflexive vs. reflective
processing
 ‘The borg’
Neurotypical
Aspie
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18. Is it better not to connected to the
interbrain?
• Fewer informational
viruses
• Understand machines in
their own right not as
defective people
• Fairness is not prejudiced
by sympathy
• Not in chains

19. “l’homme est né libre, et partout il est dans les fers. J.-J. Rousseau
2009
November
24
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20. Many other educational obstacles, plus emotional difficulties
TRYING TO FIT IN
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21. • Dysexecutive syndrome
Associated (planning)
developmental
disorders • Dyslexia (writing and spelling)
Predominantly • Dyspraxia (coordination) with
fronto-striatal or typical AS
fronto-cerebellar • Attention deficit/ hyperactivity
disorder (impulsivity, executive
functions, task persistence)
• Also links with
• Tourette syndrome
• Expressive dysphasia (may lead to
elective mutism)
• Dysgraphia
• Dyscalculia
• Topographical disorientation
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22. Atypical Asperger syndrome
• Primary abnormality is lack
of empathy, partly due to
failure of non-verbal
interpretation (‘face
blindness’)
• Ability to make
relationships but not to
keep them
• Lack of empathy may lead
to antisocial behaviour, but
greater problem is lack of
persuasiveness and ‘social
influencing power’
2009
November
24
Picture on left from Pelphrey et al, 2002 and on
right from the film, “Ripley’s game” starring
Matt Damon as Ripley
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23. Knowing about the world using non-verbal
cues
Who is being
shot?
Terrorists or
partisans?
2009
November
24
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25. Associated psychiatric disorders (213
adults with HFA/ AS in personal clinic
series)
Schizophrenia 0.5%
Cycloid psychoses
Depression 17.8%
Mania 1.4%
Anxiety 43.2%
OCD 7.8%
Substance abuse 6.6%
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26. 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
24 November 2009 Brookdale care conference, London

27. Bullying and exclusion at and from school begin a process of
narrowing the number of safe spaces
SAFE SPACES

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

29. Who bullies and why? Evidence
is limited, but
• 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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30. • 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
The limitless potential of social
control by shaming 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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31. 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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32. Table 2
How many people in your class do you: speak to, not like, and think not like you?
(AS/HFA n = 25; /HFA n = 22)
How many people do you speak to in your class?
Everyone Most People Few People None
AS/HFA 2 6 15 2
No AS/HFA 6 12 4 0
How many people do you not like in your class?
Everyone Most People Few People None
AS/HFA 0 6 13 6
No AS/HFA 0 3 12 7
Do you think there are any people in your class who do not
like you?
Everyone Most People Few People None
AS/HFA 1 5 16 1
No AS/HFA 0 2 11 9
24 November 2009 Brookdale care conference, London

33. 24 November 2009 Brookdale care conference, London

34. Where were people with AS
in Sheffield?
• Most living at home, even above 30.
• Most had difficulties coping with changes in
everyday environments
• Difficulties moving between places (for example
using public transport)
• Most common places frequented were libraries
and cinemas
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35. Is the person with AS king of the cyber world?
UNCOMMON SENSE

36. 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

37. • THE END