BEING A TRAINER IN AUTISM.

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BEING A TRAINER IN AUTISM.

• From the dark ages to more adapted educational
  orientations. Possibilities and pitfalls now and
  in the future

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Part 1

• From the dark ages to more adapted orientations

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• Trying to find a training in autism(Mist)
• Brussels univ. mental illness or PDD? Reading
  definitions from left to right, or from right to
  left
• London univ. autism and cultural context
  (discovering more about the political aspect of
  autism)(Maternal attitudes, a cross-cultural
  study comparing the Malaise Inventory and The
  feeling of social isolaton-scale.
• North Carolina TEACCH (79-80)internship

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TEACCH, a selection of important aspects

• TEACCH is a state program(the political
  dimension), NOT a strict method, more an ethical
  framework around your knowledge of autism
• 1.Iceberg-theory (gtautism from within)
• 2.My best teachersdeep respect for parents
  (and of course persons with A)
• 3.Professionals on their statue,mothers
  guilty confirmation of social clichés (the
  story continues)
• 4.Give politicians an experience
• .
• .

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Back in Belgium (1980-1985)

• 3 priorities1.Parents society, 2.Changing
  public attitudes,3.Center for training
• The cultural climate
• Autism. Ministry of Culture?
• P.sees A everywhere
• These changes. A question of at least 3
  generations
• Thinking in compartments the ministries
• Theyre for psychiatry anyway
• Trainings in autism,a.o. Gary Mesibov. Anecdote
  about the cultural context of autism and the
  political dimension

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1985 and beyond

• First big congress on A and education, followed
  by the educational experiment in A and special
  education(A minister with experience?)
• What happened during the installation
• A shame that this happened without
• If you talk to these mothers then
• The steering committeebut we survived

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Continuation of training in autism also after the
end of the experiment

• From patchwork trainings to a more solid
  approach (Long term courses, diploma courses)
• Reasons for changeProtection of
• 1.Parents
• 2.Persons with autism
• 3.Professionals
• Necessity to become generalists in autism
• (But also training not enough, extraordinary
  children need atypical professionals the
  profile of a professional in autism)

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Types of training

• 1.Theoretical trainings theory leading directly
  to practice
• 2.Practical trainings, based on the TEACCH-model
  (simulated classrooms or centers)
• 3.Follow-up, no luxury but necessity
• (Peeters,T.(2000)The Role of Training in
  Developing Services for Persons with Autism and
  Their Families.
• International Journal of Mental
  Health,Vol.29.n2,pp.44-59)

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Autism in other countries

• Just a few footnotes
• Roy Grinker no national versions of A
• Yet Sweden, Guadeloupe, France
• (nightmare about Sweden)
• How similar, how different

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• Part 2 More adapted orientations possibilities
  and pitfalls
• Grumbling over...is more functional than
• being positive...

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2.1.Science, statistics and ethics

• Vulnerability of persons with autism
• The unique personality beyond the label
• The first step in an approach to autism?
• Karl Popper and the importance of observation
• Start observingThere is no value free science
• First lessons of statistics

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• Roy Grinker and the Pygmies
• We saw it on tv, on internet
• Absolute scientific truth? Einstein and Newton
• Best statistics yes, but what do you want to get
  at?...
• Autism thinking versus behaviours. Meaning versus
  recipes and manuals.
• Not what do I do? Or how do I do it, but WHY do I
  do it.

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• Lack of coordination of services Ministry of
  Education, Health,Labour...
• Broadening of definition and even longer waiting
  lists the most challenging ones again at risk
  (also tendency to broadening too much? Are we
  getting severely normal?)
• Go beyond education citizenship, self-esteem
  versus IEP
• Autism not an illness...back to the beginning?
• Gap between educational and medical world (but
  very good exceptions...)

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2.2. TRAININGS

• Annie tells Suzie...
• The advantage of LT-courses is that at the end
  one knows how little one knows...
• Risk that LTcourses or diplomacourses do not
  focus enough on practical understanding of
  autism. Ex.of young psychologist ...back to the
  beginning...
• Directors should follow trainings more the
  highest positions the least knowledge, but the
  most important decisions (one doesnt mix towels
  with washing gloves...)(happy exceptions)
• PECS a.o. seen as therapies, without knowledge
  as a generalist in autism (back to the
  beginning)
• PDD still no high status in most of the trainings
  of psychiatrists consequences
• Risk of separating too much the trainings of
  autism with and without learning disabilities...
• ....

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2.3. Inclusion (a few notes)

• Inclusion...? A good idea (C.Sainsbury in
  Antwerp)
• In general the real question is not
  segregation versus inclusion, but what is the
  most adapted and autism-friendly environment...An
  individual question...Anyway protection comes
  first..
• The parties concerned the political world,
  persons with autism, parents, professionals...
• Mainstreaming is normalstreaming (C.S.)
• Normal is being able to be among people like
  yourself...(C.S.)
• In non-adapted environments school meant mostly
  extreme anxiety or extreme boredom(C.S.)

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Inclusion(notes)

• Politics inclusion is not a matter for education
  only...
• Parents la raison a la raison que la raison ne
  comprend pas...the role of emotions, also of
  ethics the final responsibility belongs to
  parents...( ex.)
• Persons with autism preference, level,
  possibilities...
• Professionals expertise? Possibilities? Is it
  realistic to expect that one becomes an expert in
  autism in one year? (How long does it take to
  know another language? What about another
  culture?).
• Their motivation because of autism, not
  despite autism(if forced, it will not work...cf
  profile of a professional..)
• Not a rule but an economical and human
  compromise?
• A classroom,several classrooms specialized in
  autism and from there on individualized attempts
  at integration/inclusion

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Inclusion...(notes)

• Remember the social mask at school...the
  meltdown at home...
• In any case no naive or savage inclusion
  ...rather hypocritical...Dump and hope versus
  inclusion...
• Equality doesnt mean social justice...Equity
  uneven treatment of uneven groups (Jillian
  Taylor)
• Exercise A society, majority have AS, ministers
  start inclusive experiments want us (the
  severely normal ones) to become
• AS...How far do you think they could go...
• And what do we try in our inclusive
  environments?

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2.4.Parents...

• 2 forms of expertise such a pity that the gap
  continues to exist...Terribly good examples of
  partnership, yet much long toe terror.
• Recent visit to TEACCH, again this spontaneous
  and sincere respect for parents and persons with
  A. (ex.Lee Marcus and research evening with
  parents...)
• Emotional side (and using the wisdom of burned
  out parents...)
• Backstage since L.Kanner, a pity
• Understanding A my best teachers (E.Schopler)
• Help if not really specialized in A is
  extra-burden
• ......

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Quote

• Whats in a name?It is not because schools,
  centers or institutions give themselves the label
  of being autism-specialized that they are...
• Being autism-specialized covers more thatn
  admitting pupils with autism. It is a pity that
  during the most difficult period of my sons life
  as a teenager, the biggest part of our energy had
  to be invested in the lack of knowledge of many
  professionals. This does not only influence his
  level of anxiety and stress, but unfortunately
  also had serious consequences for family life. I
  can only be grateful to those special
  professionals who understood and still understand
  our special child from within because a big
  part of his and our emotional well-being is
  dependent on it.... (De Clercq, Hilde)

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Conclusion? Progress or not?

• Of course, enormous progress...
• But thirty years ago (the dark ages) Ive seen
  parents with 4 year old children. Now they are 34
  years old. The parents have been trying to
  survive all these years, but after the
  educational services, their child is back at
  home...Eternal parenthood...
• Progress? Yes, but...