Autism advocacy, by Selina Postgate

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Autism advocacy, by Selina Postgate

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  • NAS has necessarily concentred on training existing generalist advocates in autism awareness, rather than providing an advocacy service for autistics
  • NAS has necessarily concentred on training existing generalist advocates in autism awareness, rather than providing an advocacy service for autistics
  • Autism advocacy, by Selina Postgate

    1. 1. Making Ourselves Heard ‘ expert’, peer and self-advocacy for autistic women Selina Postgate MSc
    2. 2. What is advocacy? (1) <ul><li>Wider definition: a political process aimed at influencing policy and/or resource allocation </li></ul><ul><li>In the USA: groups of parents campaigning for what they want for their autistic children and teens, often with an agenda involving ‘cure’ </li></ul><ul><li>For this presentation: speaking up for or acting on behalf of oneself or others (UK-based and referring particularly to autistic women) </li></ul>
    3. 3. What is advocacy? (2) <ul><li>Helping someone make their own views, needs and wishes clear </li></ul><ul><li>Providing the client with accurate and independent information </li></ul><ul><li>Representing someone’s views faithfully and effectively </li></ul>
    4. 4. What advocacy isn’t: <ul><li>Persuading someone to agree with others </li></ul><ul><li>Deciding what is in the client’s best interest </li></ul><ul><li>Being a friend or counsellor </li></ul><ul><li>Providing social support </li></ul><ul><li>Mediating </li></ul><ul><li>Interpreting </li></ul>
    5. 5. ‘ Expert’ advocacy (1) <ul><li>Many types of ‘expert’ (professional or formally trained volunteer) advocacy </li></ul><ul><ul><li>Legal (representation by a lawyer) </li></ul></ul><ul><ul><li>Statutory (e.g. under Mental Capacity Act) </li></ul></ul><ul><ul><li>Uninstructed (person can’t make views known) </li></ul></ul><ul><ul><li>Specialist (e.g. a particular disability or need) </li></ul></ul><ul><li>more info at A4A website: </li></ul><ul><li>www.actionforadvocacy.org.uk </li></ul>
    6. 6. ‘ Expert’ advocacy (2) <ul><li>NAS website says 1,000 independent advocacy organisations in the UK </li></ul><ul><li>NAS publish ‘Advocacy for adults with autism spectrum disorders’, a recently </li></ul><ul><li>updated 32 page book, price £5.00 </li></ul>
    7. 7. ‘ Expert’ advocacy (3) <ul><li>Very little ‘expert’ advocacy available specifically tailored for autistics </li></ul><ul><li>- see NAS reports published 2003: </li></ul><ul><li> ‘ Autism: the demand for advocacy ’; </li></ul><ul><li> and ‘ Autism: rights in reality ’ </li></ul><ul><li>Less still available for autistic women </li></ul><ul><li>Have to use non-specific services, often mental health orientated </li></ul>
    8. 8. ‘ Expert’ advocacy (4) <ul><li>Non-autism trained advocates tend to take a fundamentally non-autism friendly approach: </li></ul><ul><li>- inappropriate expectations of client </li></ul><ul><li>- lack of low arousal environment </li></ul><ul><li>- no home visits </li></ul><ul><li>- assume we can use the telephone </li></ul><ul><li>- expect us to understand and remember </li></ul><ul><li>- don’t account for ‘inertia’ </li></ul>
    9. 9. ‘ Expert’ advocacy (5) <ul><li>People who are not familiar with autism often don’t believe what we say </li></ul><ul><li>- don’t understand our jagged intelligence profile and think a high IQ equates to ability to function well in other life areas </li></ul><ul><li>- don’t know about ‘executive dysfunction’ </li></ul><ul><li>Advocates from mental health background may have problems distinguishing autism from mental health conditions </li></ul>
    10. 10. Autistic women <ul><li>Mostly present very differently from the typical adult autistic male </li></ul><ul><li>Many undiagnosed until later life </li></ul><ul><li>A great many currently undiagnosed, but no less in need of support </li></ul>
    11. 11. ‘ Passing’ as normal (1) <ul><li>Many of us have ‘special interests’ which are socially acceptable for our sex, e.g. literature, creative arts, horses </li></ul><ul><li>We tend to perseverate on social rules, appearing competent and learning to disguise our fear and loneliness </li></ul>
    12. 12. ‘ Passing’ as normal (2) <ul><li>Our increasing distress may be mistaken for simple anxiety or depression: “ there’s nothing wrong with you – have some antidepressants or [inappropriate] CBT ” </li></ul><ul><li>It took me five years to get an NHS referral for autism diagnostic testing. My autism diagnosis is “quite unequivocal”. </li></ul>
    13. 13. ‘ Passing’ as normal (3) <ul><li>Meltdowns may be misinterpreted as psychotic behaviour, self-harm as indicating serious psychiatric issues </li></ul><ul><li>Autistic women are particularly vulnerable to misdiagnosis, picking up damaging ‘mental health’ labels, e.g. social phobia, schizophrenia, bipolar and/or borderline personality disorder </li></ul>
    14. 14. Mental health problems <ul><li>We may develop mental health problems: </li></ul><ul><li>- repeated failing at jobs, relationships </li></ul><ul><li>- falling out with friends and not knowing why </li></ul><ul><li>- exhaustion from ‘running to stand still’ </li></ul><ul><li>- marginalisation and social exclusion </li></ul><ul><li>Especially hard when not aware one is autistic </li></ul><ul><li>Autistic people can have ‘endogenous’ mental health conditions too </li></ul>
    15. 15. Peer advocacy (1) <ul><li>My experiences as a peer advocate </li></ul>
    16. 16. Peer advocacy (2)
    17. 17. Self-advocacy (1) <ul><li>Autistic self-advocacy groups: </li></ul><ul><li>ASAN </li></ul><ul><li>LARM </li></ul><ul><li>AutreachIT </li></ul><ul><li>ARM UK </li></ul><ul><li>http:// www.autisticrightsmovementuk.org / </li></ul>
    18. 18. Self-advocacy (2) <ul><li>Speaking out as an individual </li></ul><ul><li>- posautive YouTube channel </li></ul><ul><li>- “Something About Us” </li></ul><ul><li>My personal experiences again </li></ul>
    19. 19. Self-advocacy (3) <ul><li>NAS self-advocacy booklet </li></ul>
    20. 20. We need the ‘experts’ <ul><li>Massive unmet need </li></ul><ul><li>Looking forward to the day when our autism advocates are mostly ‘home grown’ and we don’t depend on ‘neurotypical’ people to speak for us! </li></ul>

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