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Slide 1: Overview A utis m s pec trum dis order: a lifes pan pers pec tive T o be publis hed, J es s ic a K ings ley, 2010 C an the world afford autis tic s pec trum dis order? P ublis hed J es s ic a K ings ley, 2009 www. dilemmas .org Digby Tantam, Univers ities of C ambridge and S heffield Dilemma C ons ultanc y
Slide 2: T heme analys is of 5 webs ites of people with A S / HF A • • • • sense of alienation sense of frustration depression as a central emotion a pervasive sense of fear or apprehension
Slide 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
Slide 4: Outs tanding areas for c onc ern: S heffield s urvey • R educ tion of available s upport in adulthood • L ac k of paid work (36%, 6% of whom s upported) • L ac k of independenc e • 60% living with parents • 21% living independently • 56% thought they c ould be more independent with s upport • V ic timization 90% s aid they had been bullied B rookdale c are c onferenc e, L ondon
Slide 5: E motional problems in adoles c ents and adults with A s perger s yndrome (findings from S heffield s urvey) • S elf-harm: thoughts 50%, ac tual 11% • V iolenc e: threats 83%, ac tual 34% • B ullied 90%, 30% c urrently (inc ludes adults ) • Majority have anxiety-related dis order
Slide 6: T hemes in adulthood R yan, S , R äis änen, U " It's like you are jus t a s pec tator in this thing" : E xperienc ing s oc ial life the [`]as pie' way. E motion, S pac e and S oc iety 2008; 1: 135-43. • • • • feeling different trying to fit in s afe s pac es unc ommon s ens e
Slide 7: A n artefac t of as c ertainment? C HA NG ING P R E V A L E NC E OF AS D
Slide 8: F rom B andolier
Slide 9: Data from the US National S urvey of C hildren’s Health (from www.leftbrainrightbrain.c o.uk)
Slide 10: R is ing prevalenc e • K aye,J .A., del Mar,M., & J ic k,H. (2001) Mumps , meas les , and rubella vac c ine and the inc idenc e of autis m rec orded by general prac titioners : a time trend analys is . B MJ , 322, 460-463. P revalenc e rate in c hildren probably 1 in 150 • 24 November B rookdale c are c onferenc e, L ondon
Slide 11: B rookdale c are c onferenc e, L ondon
Slide 12: MMR vac c ination has not c aus ed A S D—in fac t there is no known c aus e for mos t c aus es , although genes mus t play a part • T he ris k of autis m was s imilar in vac c inated and unvac c inated c hildren • Ons et did not oc c ur s oon after vac c ination • T here is no s ub-type of A S D that c ould be attributed to MMR vac c ination • Mads en, K M, Hviid, A, V es tergaard, M, S c hendel, D, W ohlfahrt, J , T hors en, P , Ols en, J , Melbye, M A P opulation-B as ed S tudy of Meas les , Mumps , and R ubella V ac c ination and Autis m. N E ngl J Med 2002; 347: 1477-82.
Slide 13: B eing dis c onnec ted from the interbrain F E E L ING DIF F E R E NT
Slide 15: Hunyuan hanging temple, Mt. Hengs han, S hanxi
Slide 16: T he interbrain  E xtended c ognition  A utomatic proc es s ing  R eflexive vs . reflec tive proc es s ing  ‘T he borg’ J erry R yan, 7 of 9 S tarTrek Neurotypic al As pie B rookdale c are c onferenc e, L ondon
Slide 17: Is it better not to c onnec ted to the interbrain? • F ewer informational virus es • Unders tand mac hines in their own right not as defec tive people • F airnes s is not prejudic ed by s ympathy • Not in c hains
Slide 18: “ l’homme es t né libre, et partout il es t dans les fers . J .-J . R ous s eau 24 November B rookdale c are c onferenc e, L ondon
Slide 19: Many other educ ational obs tac les , plus emotional diffic ulties T R Y ING T O F IT IN B rookdale c are c onferenc e, L ondon
Slide 20: • Dys exec utive s yndrome A s s oc iated (planning) developmental • Dys lexia (writing and s pelling) dis orders P redominantly • Dys praxia (c oordination) with fronto-s triatal or typic al A S fronto-c erebellar • A ttention defic it/ hyperac tivity dis order (impuls ivity, exec utive func tions , tas k pers is tenc e) • Als o links with • T ourette s yndrome • E xpres s ive dys phas ia (may lead to elec tive mutis m) • Dys graphia • Dys c alc ulia • T opographic al dis orientation B rookdale c are c onferenc e, L ondon
Slide 21: A typic al A s perger s yndrome • P rimary abnormality is lac k of empathy, partly due to failure of nonverbal interpretation (‘fac e blindnes s ’) A bility to make relations hips but not to keep them L ac k of empathy may lead to antis oc ial behaviour, but greater problem is lac k of pers uas ivenes s and ‘s oc ial influenc ing power’ • • 24 November P ic ture on left from P elphrey et al, 2002 and on right from the film, “ R ipley’s game” s tarring Matt Damon as R ipley B rookdale c are c onferenc e, L ondon
Slide 22: K nowing about the world us ing nonverbal c ues Who is being s hot? T erroris ts or partis ans ? 24 November B rookdale c are c onferenc e, L ondon
Slide 24: A s s oc iated ps yc hiatric dis orders (213 adults with HF A / A S in pers onal c linic s eries ) Schizophrenia Cycloid psychoses Depression Mania Anxiety OCD Substance abuse 0.5% 17.8% 1.4% 43.2% 7.8% 6.6% B rookdale c are c onferenc e, L ondon
Slide 25: T iming of ps yc hologic al dis orders as s oc iated with A S (many of thes e dis orders probably greater in more able group) • • • A et 11-13 S urge of anxiety-related problems inc luding OC D, dys morphophobia, panic dis order A et 16-18 S ec ondary depres s ion, s oc ial phobia A et >16 • • • • • • • A et >18 ‘C atatonia’ A et >25 P aranoid s tates A et >35 S oc ial withdrawal, is olation, relations hip dis repair P rogres s ive s oc ial withdrawal often attributed to s c hizophrenia L ate adoles c enc e bipolar dis order B rief ‘c yc loid’ ps yc hos es Non-ps yc hotic halluc inos es 24 November 2009 B rookdale c are c onferenc e, L ondon
Slide 26: B ullying and exc lus ion at and from s c hool begin a proc es s of narrowing the number of s afe s pac es S AFE S PACE S
Slide 27: C ons equenc es of bullying • P as s ive failure to be inc luded • R educ ed us e of c ommunity res ourc es (s oc ial exc lus ion) • E xperienc e of being unwanted/marginalize d • A c tive rejec tion , blaming, s c apegoating • S tigma as a means of keeping threatening Other at a dis tanc e • B ullying P ainted B ird by E dward G afford, ins pired by the novel ‘P ainted B ird’ by J erzy K os ińs k , its elf bas ed on what has been c laimed is a fic tive war-time experienc e of the author in P oland
Slide 28: Who bullies and why? E videnc e is limited, but • • • • • On behalf of a s oc ial group B ullies are highly regarded, but not popular B ullies ’ in-group s tatus may be tenuous V ic tims are different V ic tims may be more aggres s ive than non-vic tims , and are perc eived, perhaps as more threatening B rookdale c are c onferenc e, L ondon
Slide 29: T he limitles s potential of s oc ial c ontrol by s haming • A partic ularly wide ranging tool kit • R eadines s to c ons ider the mos t intens e emotional is s ues and in the next moment, the mos t prac tic al and c ognitive ones • Having a c lear gras p of the individual in front of you, not jus t in life experienc e, or temperament, but in c ognitive abilities B rookdale c are c onferenc e, L ondon • B e aware of s hame and
Slide 30: Does s oc ial exc lus ion lead to func tional movement impairment Is there a differenc e in the amount of phys ic al ac tivity of pupils with A S c ompared to others ? • Mean number of s teps per hour: A S group = 902, c ontrol group = 1312 (t = -2.645, p = .027) B rookdale c are c onferenc e, L ondon
Slide 31: 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 AS/HFA No AS/HFA Most People Few People None 2 6 15 2 6 12 4 0 How many people do you not like in your class? Everyone Most People Few People None AS/HFA No AS/HFA 0 6 13 6 0 3 12 7 Do you think there are any people in your class who do not like you? Everyone Most People Few People 5 2 16 11 None 1 9 AS/HFA No AS/HFA 24 November 2009 1 0 B rookdale c are c onferenc e, L ondon
Slide 32: 24 November 2009 B rookdale c are c onferenc e, L ondon
Slide 33: Where were people with A S in S heffield? • Mos t living at home, even above 30. • Mos t had diffic ulties c oping with c hanges in everyday environments • Diffic ulties moving between plac es (for example us ing public trans port) • Mos t c ommon plac es frequented were libraries and c inemas B rookdale c are c onferenc e, L ondon
Slide 34: Is the pers on with A S king of the c yber world? UNC OMMON S E NS E
Slide 35: Is A s perger s yndrome the future? Owen T hor Walker apointed to Tels traC lear, who previous ly wrote c ode enabling a hac ker group to s teal £13.9M from bank ac c ounts B ram C ohen, founder B itTorrent, and s elf diagnos ed As pie
Slide 36: • T HE E ND