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Aspie living: story of past, vision for future

Aspie living: story of past, vision for future. Mircea-Valer Pauc ă, Romania m ircea.pauca @gmail.com ACE Project, Ljubljana, Feb. 2 nd , 2011. My early childhood. Parents aged 41, intellectual 3-5 generations Early differences ‘masked’ by heart defect (VSD)

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Aspie living: story of past, vision for future

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  1. Aspie living: story of past, vision for future Mircea-Valer Paucă, Romania mircea.pauca@gmail.com ACE Project, Ljubljana, Feb. 2nd, 2011

  2. My early childhood • Parents aged 41, intellectual 3-5 generations • Early differences ‘masked’ by heart defect (VSD) • Slow growth, clumsiness, walking late • Speech ~normal, reading early, special interests • Food intolerances, allergies • Heart surgery (at 6 years) => explosive growth

  3. Schools • Regular kindergarten, school - dedicated teachers, common-sense adaptations - structured environment, less distractors - social shocks, bullying - advanced academically, competitions (math,physics…) • Elite high school – computer science - no bullying, prestige “Magister” • 17 years old – first psychological crisis ‘absurd to struggle to gain the privilege to struggle more’

  4. Job • Higher studies (license ~BA, MA) • – Academy of Economic Studies, Bucharest • Special interests: optimization, applied math modelling • Worked for 6.5 years: • Preparator, Teaching Assistant • mismatch with social environment, “between anvil and hammer”, contradictions official/facts • enthusiasm > interrupted routines > daily torture > blocking, giving up (avoid explosive reaction)

  5. Diagnoses • 17 yrs: ‘intellectual overexertion’ • No medication, no therapy => ‘Walk more’ ;-) still good! • 19 yrs (Army recruitment): immature personality • During job: ‘anxious-avoidant personality’ • ‘autistic personality’ • ‘reactive depression’ • => medications: little help, side-effects, expense • At 31 yrs: Asperger’s disorder …better explanation • - pressure to ‘get better’, no meaningful support • Found ‘Autism Romania’ NGO

  6. How I perceive the differences • Knowing, analysis ABOUT systems – easy, natural, rewarding • Being INSIDE complex situations, with people – difficult, aversive, exhausting • ‘Shortcuts’ (=special abilities?) • ‘Long-cuts’, very frustrating (=lack of some foundation?) - Both transparent to self, hard to explain to others • ‘The normal-hard-working path’ – between the two => Use shortcuts, replace long-cuts with hard work • The 3 can coexist/interfere

  7. Continuing problems • Limited self-organization, multitasking • = “being own master, slave and secretary” • Stress reactions (~PTSD?) • - flash-backs, associations, rumination, body activation (stomach, nausea, heart, sweat) • Social anti/motivation (weak +, strong -) • “Punished by rewards” • Slow regeneration, chronic fatigue • Fluctuations in ability (with situations, demands) • Anxiety, depression – only secondary effects => Heal the situation first !! before any medications

  8. What is improvement? • Max. Reserve = Possibilities – Internal cost * Demands (in military strategy sense: forces free to react to control) • There are extra reserves for emergencies but - one CANNOT live a life in emergency mode ! (Events like this are ‘happy emergencies’) • Lupus patients: “Theory of Spoons” = limited resource even for assumed daily living

  9. The Invisible Disability • Assumptions of normal (or better) from others => misunderstandings, blame, exploitation • Ugly Dilemma – what’s usually to choose from: I. “assumed normal”, no support, blame for all – II. Label, stigma + “help” (others rigid perspective) => desired: real help with own objectives • Recognize the effort to adapt – both exhausting AND insufficient for others => Economize and concentrate it on objectives of best importance vs difficulty

  10. Then how we’ll live ? • Context: world economy expected to continue contracting! Increasing social aggressiveness • Peak oil 2005 => Peak net energy => Peak Everything • Blame NTs ;-) Greed, arrogance, status seeking => Private, small-scale self-administered living • hermits / ‘monasteries’ - not necessarily religious • (grouping mostly to economize resources; privacy, freedom of objectives up to not bothering others) • Minimal, intermittent support under OUR control • Work as option when meaningful, NOT imposed • HIKIKOMORI in Japan

  11. “Use it up and wear it out, Make it do Or do without !” (World War 2 British slogan) Status with authorities: not even unemployed ! No ‘disability degree’ – degrading process… Need better alternatives than State agencies

  12. My greatest wish: to live a livable life (AS I CAN, not as others dream on my costs…) long enough to see and understand more of the Absurd Theatre of the world – and laugh at it ! • Knowledge and control ! • Use special interests and abilities • (system dynamics; music – keyboards…)

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