AUTISM,PARENTS AND HUMILITY A short introduction

Overview 1.Introduction 2.A profile for a professional in autism 3.Knowing versus understanding 4.Humility and perspective taking 5.’But we are in the majority!’ 6.Humility: persons with autism, parents 7.Book smart versus street smart… 8.A diploma in A, and then they meet parents 9.(In memoriam) Eric Schopler’s teachers 10.(Just in case): two annexes, ‘what I have learned from parents’…

Introduction An exaggerated example: my daughter knew French, when she came for the first time on a French beach, she said with a big smile: ‘La porte est ouverte’ ‘The door is open’ knowing versus understanding… It’s going to be a mean little speech. Please no ‘long toe feelings’. It’s not about the ‘good’ people who ‘understand’… But now more and more: end of the ‘romantic’ period in A, it has become an ordinary job from 9 to 5….?

A profile for a good professional From trainings to a profile: special people need special professionals 1.Attracted by differences 2.Creativity and imagination 3.Didactic skills 4.No need for ordinary thanks 5.Training is permanent 6.Solutions never definite 7.The lonely preacher in the desert 8.Working in team (coherence!) 9.Courage to adapt communication and socialisation 10.HUMILITY….

Knowing versus understanding Mindblindness and the bat-analogy… Do you understand? Imagine there are persons among us…. Do you understand? In autism the biggest question is not WHAT to do…, neither HOW to do…, but WHY do you do it? Only then are you able to individualize… Knowing is not enough, understanding the why is needed…. (no ‘methods’, no ‘manuals’, but understanding autism FROM WITHIN…) (Study on ‘Preparing Work for Persons with Autism’…Biggest obstacle ?....

Humility and perspective taking Persons with autism have difficulties with ToM, detail thinking, executive dysfunctions, they have echolalia, echobehaviour…. And what about us? We have the same difficulties in situations that are beyond our capacities….ToM,detail thinking, executive functions, echo…Much depends upon the level of difficulty… We even have a PDD in trying to understand Autism

‘We are right, because we are in the majority’ ! (?????!!!!!!!) Do we have the ‘norm’ because we are ‘normal’ people (‘severely normal’?). We do have a complex of cultural superiority that ‘gives us the right’ (?) to think that we do know our quality of life should also be THE quality of life for persons with A? Do persons who conceptualize differently also have the right to their own ‘reality’? The image of the ‘bridge between two cultures’

From persons with A to parents and the question of humility Stephen Shore: ‘If you have seen one person with A you have seen one person with autism’… TEACCH-principle: we might be the experts in general, parents are experts of their own child Not putting these two forms of knowledge together is a deadly sin… D.Ricks’ study on early emotional vocalizations and the ‘hyperprivate early emotional vocalizations’ that only their own parents understood…(consequences for later development…) Professionals with a Ph.D.in autism, parents with a Ph.D. in the knowledge of their own child….

U.Frith: ‘Test intelligence versus World intelligence’ Or ‘Book smart’ versus ‘Street smart’? A characteristic only for persons with A? A new phenomenon: first diplomas in A in schools of higher education and universities. Not all rectors are saints….(Do we do it for autism? Or are we in autism for the money?) Courses under responsibility of lecturers without practical knowledge of A. Book smart or street smart? New diplomas in autism for students who are very book smart….

‘And then they meet parents…’ Eric Schopler and the confirmation of 2 prejudices in society: parents…, professionals… And then the book smart professionals meet street smart parents (autism live!,cf my first experiences…) Two reactions. 1.Well, let’s put both kinds of knowledge together… 2.Hell. I am the expert. After all: I have the diploma… (back to the beginning….)

(In memoriam) Eric Schopler: ‘I have had two great teachers’: 1.The parents (the experts of their own child, the most neglected category of ‘specialists’) 2.The persons with A themselves who have shown us through the behaviours whether we were right or wrong (‘understanding autism from within. The ice-berg theory’).

Still time left? No? Then thank you for your attention….

Annex, just in case…(1) ‘My public confession…’: my own mistakes… ‘How good we are…’ (practical training… ‘Spider man…’ Low or young developmental age ‘Accepting’… ‘Yes, I understand but it doesn’t take away my sorrow…’ The ‘saviour’ complex

Annex 2: Personal reflections. What I have learned from parents…. How many? Unconditional love… Their power in the past, present, future… Social determination of autism: future of persons with autism depends most on parents A.Artaud : Indians who came down to the city once a year to look at the people who had chosen the wrong path…. (Parents and the ‘futilities of life’…) Alvarez (‘The savage god’): cured from the illness called ‘Americanism’