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New developments in Asperger syndrome Digby Tantam Clinical Professor of Psychotherapy, University of Sheffield Senior Visiting Research Fellow, University of Cambridge Honorary Consultant Psychiatrist, Sheffield Health and Social Care Trust Director, Dilemma consultancy
Issues for Asperger syndrome The life-time prevalence may not be the same as the year prevalence in children Does economic cost of services, or lost employment, accurately reflect the reduced quality of life of people with AS? Is prevalence in women still under-estimated?
The life-time prevalence may not be the same as the year prevalence in children
Contributors Sheffield survey Myles Balfe Ting Chen Mike Campbell submitted to Autism Bullying project Paul Naylor Jenny Wainscot Jenna Williams 15 medical students International Journal of Psychology 24 November 2009 Parents, teachers, and people with Asperger syndrome Sheffield Asperger Parents Action Group Brookdale care conference, London
                     Project Development 15 Oct 08 Psychotherapy of people with AS Biejing WCP 6
Brookdale care conference, London
Data from the US National Survey of Children’s Health (from www.leftbrainrightbrain.co.uk)
Issues for Asperger syndrome Does economic cost of services, or lost employment, accurately reflect the reduced quality of life of people with AS?
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
Green et al compared 20 adolescent men with AS with 20 with conduct problems AS group Severely impaired practical social functioning  Anxiety Obsessionaldisorders Both groups had Depression Suicidal ideation Tempers and defiance
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 Brookdale care conference, London
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
Is prevalence in women still under-estimated?
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 15 Oct 08 Psychotherapy of people with AS Biejing WCP 15
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
Feeling different Being disconnected from the interbrain
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.)
Hunyuan hanging temple,  Mt. Hengshan, Shanxi
The interbrain ,[object Object]
Automatic processing
Reflexive vs. reflective processing
‘The borg’Jerry Ryan, 7 of 9 StarTrek Neurotypical Aspie Brookdale care conference, London
24 November 2009 Brookdale care conference, London “l’hommeestnélibre, et partoutilestdans les fers. J.-J. Rousseau
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
Trying to fit in Many other educational obstacles, plus emotional difficulties Brookdale care conference, London
Atypical Asperger syndrome Dysexecutivesyndrome (planning) Dyslexia (writing and spelling) Attention deficit/ hyperactivity disorder (impulsivity, executive functions, task persistence) Also links with Tourette syndrome Expressive speech and language disorder (may lead to elective mutism) Dysgraphia Dyscalculia Topographical disorientation Associated developmental disordersPredominantly fronto-striatal or fronto-cerebellar Brookdale care conference, London
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’ Picture on left from Pelphrey et al, 2002 and on right from the film, “Ripley’s game” starring Matt Damon as Ripley 24 November 2009 Brookdale care conference, London
Knowing about the world using non-verbal cues Who is being shot?  Terrorists or partisans? 24 November 2009 Brookdale care conference, London
Atypical AS ‘Look normal’, because normal NVE.  Do not seem like ‘Aspies’ Form friendships but they do not last May have many hidden learning difficulties e.g. lack of speech understanding, reduced working memory Vulnerable adults Lack of empathy leads to a lack of persuasiveness This may lead to unassertiveness or exploitation Coercive interpersonal strategies, possibly more likely if associated ADHD Drug misuse, violence, other forensic issues Impulsivity may alternate with compulsivity May seek an identity as adults, and like special interests in other people with AS, may embrace or drop one ruthlessly. Modelling on others may be even more marked
Coping with a lack of identity Fads ‘Obsessive’ relationships Lack of identity in many people with ASD Adopting identity wholesale Joining charismatic groups Moving places and work Searching for identity ‘Transexualism’ ‘Aspie’ Identities off the peg Gangster Professor Teddy bear 21 Mar 08 Advances in research and management of AS
Safe spaces Bullying and exclusion at and from school begin a process of narrowing the number of safe spaces
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 JerzyKosińsk , itself based on what has been claimed is a fictive war-time experience of the author in Poland
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 Brookdale care conference, London
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 The limitless potential of social control by shaming Brookdale care conference, London
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) Brookdale care conference, London

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Malta 26 Mar 2010 New Developments In Asperger syndrome

  • 1. New developments in Asperger syndrome Digby Tantam Clinical Professor of Psychotherapy, University of Sheffield Senior Visiting Research Fellow, University of Cambridge Honorary Consultant Psychiatrist, Sheffield Health and Social Care Trust Director, Dilemma consultancy
  • 2.
  • 3. Issues for Asperger syndrome The life-time prevalence may not be the same as the year prevalence in children Does economic cost of services, or lost employment, accurately reflect the reduced quality of life of people with AS? Is prevalence in women still under-estimated?
  • 4. The life-time prevalence may not be the same as the year prevalence in children
  • 5. Contributors Sheffield survey Myles Balfe Ting Chen Mike Campbell submitted to Autism Bullying project Paul Naylor Jenny Wainscot Jenna Williams 15 medical students International Journal of Psychology 24 November 2009 Parents, teachers, and people with Asperger syndrome Sheffield Asperger Parents Action Group Brookdale care conference, London
  • 6. Project Development 15 Oct 08 Psychotherapy of people with AS Biejing WCP 6
  • 8. Data from the US National Survey of Children’s Health (from www.leftbrainrightbrain.co.uk)
  • 9. Issues for Asperger syndrome Does economic cost of services, or lost employment, accurately reflect the reduced quality of life of people with AS?
  • 10. 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
  • 11. Green et al compared 20 adolescent men with AS with 20 with conduct problems AS group Severely impaired practical social functioning Anxiety Obsessionaldisorders Both groups had Depression Suicidal ideation Tempers and defiance
  • 12. 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 Brookdale care conference, London
  • 13. 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
  • 14. Is prevalence in women still under-estimated?
  • 15. 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 15 Oct 08 Psychotherapy of people with AS Biejing WCP 15
  • 16. 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
  • 17. Feeling different Being disconnected from the interbrain
  • 18.
  • 19. 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.)
  • 20.
  • 21. Hunyuan hanging temple, Mt. Hengshan, Shanxi
  • 22.
  • 25. ‘The borg’Jerry Ryan, 7 of 9 StarTrek Neurotypical Aspie Brookdale care conference, London
  • 26. 24 November 2009 Brookdale care conference, London “l’hommeestnélibre, et partoutilestdans les fers. J.-J. Rousseau
  • 27. 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
  • 28. Trying to fit in Many other educational obstacles, plus emotional difficulties Brookdale care conference, London
  • 29. Atypical Asperger syndrome Dysexecutivesyndrome (planning) Dyslexia (writing and spelling) Attention deficit/ hyperactivity disorder (impulsivity, executive functions, task persistence) Also links with Tourette syndrome Expressive speech and language disorder (may lead to elective mutism) Dysgraphia Dyscalculia Topographical disorientation Associated developmental disordersPredominantly fronto-striatal or fronto-cerebellar Brookdale care conference, London
  • 30. 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’ Picture on left from Pelphrey et al, 2002 and on right from the film, “Ripley’s game” starring Matt Damon as Ripley 24 November 2009 Brookdale care conference, London
  • 31. Knowing about the world using non-verbal cues Who is being shot? Terrorists or partisans? 24 November 2009 Brookdale care conference, London
  • 32. Atypical AS ‘Look normal’, because normal NVE. Do not seem like ‘Aspies’ Form friendships but they do not last May have many hidden learning difficulties e.g. lack of speech understanding, reduced working memory Vulnerable adults Lack of empathy leads to a lack of persuasiveness This may lead to unassertiveness or exploitation Coercive interpersonal strategies, possibly more likely if associated ADHD Drug misuse, violence, other forensic issues Impulsivity may alternate with compulsivity May seek an identity as adults, and like special interests in other people with AS, may embrace or drop one ruthlessly. Modelling on others may be even more marked
  • 33. Coping with a lack of identity Fads ‘Obsessive’ relationships Lack of identity in many people with ASD Adopting identity wholesale Joining charismatic groups Moving places and work Searching for identity ‘Transexualism’ ‘Aspie’ Identities off the peg Gangster Professor Teddy bear 21 Mar 08 Advances in research and management of AS
  • 34. Safe spaces Bullying and exclusion at and from school begin a process of narrowing the number of safe spaces
  • 35. 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 JerzyKosińsk , itself based on what has been claimed is a fictive war-time experience of the author in Poland
  • 36. 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 Brookdale care conference, London
  • 37. 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 The limitless potential of social control by shaming Brookdale care conference, London
  • 38. 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) Brookdale care conference, London
  • 39. 24 November 2009 Brookdale care conference, London
  • 40. 24 November 2009 Brookdale care conference, London
  • 41. 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 Brookdale care conference, London
  • 42. Uncommon sense Is the person with AS king of the cyber world?
  • 43. 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

Notas del editor

  1. Increasingly health costs are driving innovation. There have been many recent studies of health costs in AS, and one of these has influenced the UK government towards considering the needs of adults with ASD for, effectively the first time.
  2. Although AS is often said to be ‘less severe’ than autism, the reduction in quality of life may be greater, and this may be reflected in the higher incident of emotional difficulties in adolescenceWomen with AS are still being diagnosed as having personality disorders, rather than AS—and it is a difficult diagnosis
  3. Although AS is often said to be ‘less severe’ than autism, the reduction in quality of life may be greater, and this may be reflected in the higher incident of emotional difficulties in adolescenceWomen with AS are still being diagnosed as having personality disorders, rather than AS—and it is a difficult diagnosis
  4. Although AS is often said to be ‘less severe’ than autism, the reduction in quality of life may be greater, and this may be reflected in the higher incident of emotional difficulties in adolescenceWomen with AS are still being diagnosed as having personality disorders, rather than AS—and it is a difficult diagnosis
  5. Although AS is often said to be ‘less severe’ than autism, the reduction in quality of life may be greater, and this may be reflected in the higher incident of emotional difficulties in adolescenceWomen with AS are still being diagnosed as having personality disorders, rather than AS—and it is a difficult diagnosis