BEING A TRAINER IN AUTISM.

1. BEING A TRAINER IN AUTISM. From the dark ages to more adapted educational orientations. Possibilities and pitfalls now and in the future

2. Part 1 • From the dark ages to more adapted orientations…

3. 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

4. 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 (>autism from within…) • 2.’My best teachers’…deep 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… • ……. • …….

5. Back in Belgium (1980-1985) • 3 priorities:1.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… • They’re for psychiatry anyway… °Trainings in autism,a.o. Gary Mesibov. Anecdote about the cultural context of autism and the political dimension…

6. 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 committee’…but we survived

7. 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 change:Protection 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)

8. 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.n°2,pp.44-59)

9. 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…

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

11. 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 observing…There is no ‘value free’ science • First lessons of statistics

12. 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.

13. 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...)

14. 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 doesn’t 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... • ....

15. 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.)

16. 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

17. 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’ doesn’t 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?

18. 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 • ......

19. Quote • ‘What’s 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 son’s 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)

20. Conclusion? Progress or not? • Of course, enormous progress... • But thirty years ago (the dark ages) I’ve 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...