Centre for Training in Autism
Opleidingscentrum Autisme (OCA) was one of the first organizations in Europe devoted to individualization and active participation in the education of individuals with autism. OCA seeks the integration of people with autism in society, and promotes educational adult services. OCA also delivers training courses in Europe and throughout the world.
A question you are often asked after a conference is whether you have a child with autism yourself…
This question is asked frequently, especially when I am abroad. I think it is due mainly to the way we try to understand autism. In many countries autism unfortunately still seems associated with behaviour and particularly the difficult behaviour they are trying to get under control. The emphasis is on trying to make children with autism ‘as normal as possible’ (whatever the word ‘normal’ may mean…).
Such an attitude focuses on the outside, while autism is on the inside. Children with autism treat information in a different way which makes the development of communication different; they find it hard to understand our social culture; their imagination functions in a different way. Autism is indeed ‘different’, but it is not a ‘degenerate form of normality’, as Jim Sinclair, a person with autism, once wrote.
The way I try to explain autism has to do first and foremost with the inside. Behaviour is the tip of the iceberg, the visible part, but the most important part is invisible. In a similar way the causes of many ‘difficult’ behaviours (or stress problems) are invisible. It is our responsibility to try to understand their causes. The more we try to understand them the more we are able to focus on the prevention of these ‘challenging behaviours’. It is obvious that this attitude shows more respect for people who are different and who try so hard to survive among us…
This way we emphasize ‘the meaning’ of ‘behaviour’ more strongly and we try to understand autism from within. This is clearly difficult but at the same time it is the only way that I find ethically acceptable. When we deal with people who are highly vulnerable we need to try to understand their minds first of all. I think this is the attitude that makes parents think: you see our children the way we feel about them.
In Flanders and The Netherlands (and some other countries) this attitude has become a part of the culture of autism, but this is not the case everywhere. Parents and professionals who hear for the first time this idea of ‘understanding from within’ may think: he must have a child with autism himself. I think that it has more to do with an attitude: those who focus primarily on behaviour seems to start from a feeling of cultural superiority that says that ‘so-called normal people’ (the ‘neurotypical ones’) represent the norm of quality of life. There seems to be little place in their world for ‘neurodiversity’. I find this way of dealing with people cruel: as if all one needs to do is follow a recipe-book… This is the norm, so conform! Moreover this lack of respect doesn’t take into account that there are as many manifestations of autism as there are people with autism: autism is an individual thing and each person will show it in his own way.
Stephen Shore (another person with autism) once said ‘If you have seen one person with autism then you have seen one person with autism’. Humility is important: there is no manual written for just ‘one’ individual with autism. Trying to find solutions along with the parents requires a lot of creativity. Cookie-cutter recipes do not work.
But this was not the prevalent attitude when you started working with autism in the 70′s, the period when your passion for autism developed. Where then did this interest come from?
Well, it is not a very typical story… Life itself dictated this interest. I never intended to become a ‘social worker’. Social workers… I associated them – please don’t feel hurt! – with a fragment from Samuel Beckett’s ‘Molloy’. (There he writes – I quote very freely – : when a social worker wants to help you, it is better to get down on your knees immediately and say: ‘Thank you, thank you dear madam’, because otherwise they will persevere anyway till the end of the world, if necessary with vomiting pill included…).
In those years I was teaching at St.Lucas Art College in Brussels. It was a kind of free-wheeling fortress where a teacher – in the best sense of the expression – ‘could let himself go’… The program itself was not important, but it was one that engaged the students. I lectured about Latin American and African literature. About suicide in literature, euthanasia, madness and via madness also about autism…
Madness and autism?
In those years I did an evening program for the Flemish Radio about madness. I had published a series of articles in a weekly magazine (Humo) etc. and I wanted to understand ‘the origin of madness’ (those were the days of anti-psychiatry: Ronald Laing, Thomas Szasz, David Cooper). Did it have to do with the environment, with brain dysfunction, or with both…?
After my studies in Philosophy and Literature I decided to study Neurolinguistics at the Free University of Brussels and there I heard the word ‘autism’ for the first time. Autism was described as an infantile psychosis (even though Professor Lebrun said immediately that it was not his specialty, but that this was how it was described by many of his colleagues). Madness-in-children-caused-by-their-mothers… Astonishing! How was such a thing possible? I-could-not-believe-it. But I was going to try to understand.
By coincidence a few weeks later I received an invitation to come to the first press conference organized by ‘Parents of Psychotic Children’ and there I was to meet mothers who were supposed to have caused psychosis in their children… What I saw there was a huge cultural shock: everything in our society seems so well organized if your child is ‘normal’, but if there is the smallest ‘deviance’ you are accused of endless ‘shortcomings’ (if you permit this euphemism). These ‘bad’ mamas were so desperately trying to find appropriate services for their children… and were not finding them in our affluent society. Even worse, they were accused or suspected of being responsible for causing the condition. This seemed to me a huge social injustice and was the first thing that motivated me to try to understand more about autism in a social context.
My second motivation, which might seem strange at first glance, was that I wanted to try to understand autism in a way similar to the way one reads and understands literature.
When one reads books written by Beckett, Coetzee, Dagerman… one is confronted with in-depth solitude. The more one understands autism the more one sees that it too is about solitude, but in autism, solitude is different because it has to do mainly with conceptual problems, the difficulty in understanding the world around them and then the anxiety and depression that follows. I wanted to understand this aspect, ‘from within’, but a career in autism never occurred to me, much less training programs in autism. It really had more to do with an ‘artistic motivation’, a passion to understand the lives of others, their world from the inside.
And then I started reading the international literature on autism, especially British literature and saw that there, autism was no longer seen as a psychosis but as a ‘developmental problem’. What a difference in terms of social consequences: mothers did not have to feel guilty and did not have to think that they were part of the problem, but rather an essential element of the solution. Children with autism were not mentally ill and ‘their so-called psychosis’ did not have to be treated; instead they could go to school (The National Autistic Society – the NAS – was developing their first programs in autism specialized schools).
With this new information I went to my professor who luckily was very open-minded, and he told me: “I said before that autism was not my specialisation. What you have discovered is very interesting, but if you want to study autism I can only offer you one bit of advice: no one in Belgium is going to help you. Try to study abroad”.
But I had already found this out myself. When I was researching an article on autism I interviewed a professor who did specialise in autism. He was not able to give any reasonable answers to my questions. Later I asked for an interview from Lorna Wing who gave me brilliant answers to the same questions. I really do think that it was Lorna who gave me the definitive push and I realized more and more that I was undertaking a long and interesting mental journey from which there would be no return…
And so I took my family to London on a small scholarship from The British Council. I was accepted into a program to study ‘Human Communication’ at Guy’s Hospital. I needed money and so I started to make interviews (later broadcasted by the Flemish Radio) and published a book (Over autisme gesproken/Talking about autism). I learned a lot, interviewing important figures in the world of autism, among them Lorna Wing (on the Causes of Autism), Patricia Howlin (on Dealing with Autistic Children), Derek Ricks (Pre-verbal Expression in Typical and in Autistic Children), John Corbett and Janet Carr (Self-Abusive Behaviour), Beate Hermelin (Autism and Deaf/Blind Children) a.o. I added a personal article that was very much needed in my country: ‘De ouders aan de macht’ (‘More power for Parents’). This article was later also translated into French. In fact in France they needed the information even more (I’ll come back to it later).
TEACCH (Treatment and Education of Autistic and related Communication handicapped Children, a state program for autism in North Carolina) has played such an important role, not only in your development, but also for Belgium and later also in most European countries and beyond. How did you find your way to TEACCH?
Well, the problem is that universities give you a lot of interesting theoretical lectures, but what do you do with them in practice? As we know there is a big difference between being ‘book smart’ and ‘street smart’ and that is true not only for people with autism.
Back in Flanders parents had begun to see me as ‘the expert’ (what an arrogant word!) on autism and indeed I knew a lot of answers to theoretical questions, but when parents switched over to daily life: “He repeats everything I say, is this a good sign or a bad one and how do I react?”, “He hits his head against the wall, how do I react?”, I realised how little I really knew. I didn’t think of myself as an ‘expert’ in autism. I never felt that way, at best I was merely ‘a guide’. I realized that I needed to study more. When I met Lorna Wing again and told her my problem, she said “I know how important it is for you to help parents. There is a state-program in North Carolina with an excellent parent-professional collaboration. Try to get accepted there for an internship. I’ll write a letter of recommendation”. Other professors in Belgium also recommended me and I won a scholarship from ‘The Fund of Medical Research’ (even though I was not a doctor) to study for a year at TEACCH. And that’s how it happened.
What did I learn there? So very much. I learned to be a diagnostician, a child therapist, a parent-consultant, and I worked in the classroom with children and adolescents with autism, but more than anything else I developed a profound respect for people with autism and their parents. As I wrote before: the iceberg theory, the understanding of autism from within, the humble attitude of professionals towards parents (after all, parents are the experts on their own children), the absence of rivalry between professionals, team spirit. TEACCH for me continues above all to be associated with high ethical standards.
One anecdote that summarizes it all: in 2007, my colleague Hilde De Clercq and I were invited by TEACCH to talk at their annual in-service. Hilde was the ‘keynote speaker’. This invitation was like a dream for Hilde because she had heard me talk so often about the quality of collaboration between parents and professionals and now she was going to observe it in reality (we were invited also to stay a few days longer for visits). I on the other hand was a bit nervous: perhaps I had exaggerated, maybe my enthusiasm was a bit over the top. Would TEACCH still be of such a high quality now that Eric Schopler, the founder of the program, was no longer alive? Everything went well, but on the way back I asked her if she wasn’t a little bit disappointed with what she had seen. She immediately said: “No, it is even better than I had dreamed”. “Well, then”, I asked, “What was special about it?” “The simplicity, this spontaneous and natural way of dealing with parents and especially this mentality of thinking: ‘where would we be without the parents?’. The total absence of pretention. And the respect for people with autism.” She told me about Gary Mesibov, then director, who came to listen to her and who said after her conference that he was going to use part of her speech to explain autism to parents.
Lee Marcus, director of the TEACCH–Center at Chapel Hill, had with us involved, a meeting with parents. He wanted to find out from them what were their priorities for future research in autism… Wonderful… (Later they honoured Hilde De Clercq with a TEACCH-affiliation because of her in-depth understanding of autism).
And then, at the end of 1980, you returned to Belgium. It would be interesting if you could give us some information about the situation 30 years ago. It still seems recent, but almost nobody remembers the pre-history of all that seems so obvious now…
I’ll start with my own naivety. I had such a pearl of a dream: what I had learned at TEACCH would be such a good model for Flanders: autism wasn’t seen anymore as a psychosis, the principles of a good education in autism had been validated, parents could send their children to schools (instead of to hospitals), where they would be helped by trained teachers, parents were actively involved in programs for their children, etcetera.
The first person I talked to in a ministry simply said: “Dear sir, the changes you talk about, that’s a question of at least three generations…” (to build is easy, but not to break down…).
Not that long afterwards I had a another talk with someone at the ministry. His answer needs to be quoted in the Guinness Book of Records… I explained him how important it was to invest in children with autism while they were young so that at adult age they would not only be happier, but (finances are important in these discussions) that society would save money at the end. He dryly said: “You cannot mean this. So, we from the Ministry of Education should invest so that the Ministry of Social Affairs saves money…”. (And we who thought that only persons with autism ‘think in compartments’…)
And then in 1985 you had this famous ‘experiment in autism in special education’. This seemed like a big step forward…
Yes, of course, but let us begin with the beginning, the years before the experiment.
And now we come to the Opleidingscentrum Autisme… Imagine: the politicians give you money and there is a strong parents’ organization. How is the money going to be spent?
The quality of life of persons with autism does not depend upon the quality of bricks of the buildings, but more upon the way carers and parents understand autism. We are still in 1980… there was no real interest yet in autism and most of the theories were of psychogenic origin. Universities and Schools of Higher Education were barely interested in autism. Parents asked me to start with trainings. At that moment I was again teaching literature at Sint-Lucas in Brussels… So I started with trainings in my free time. And one day a friend of mine said: “You are responsible for trainings, you do it in your home, why don’t you call it ‘Center for Training in Autism’?”
My first reaction was: “Me? A center? Is this not a bit too far-fetched?” And then afterwards: “After all, why not?” And so my private home became the first Opleidingscentrum Autisme.
Between 1980 and 1985 I organized my first training courses, the first awareness-raising attempts: both theoretical and practical training (along with professionals from TEACCH I invited to help me). I still remember that the first practical training was a financial disaster: only five Flemish professionals turned up but fortunately five Dutch professionals also joined. They were the ‘pioneers’.
Now let me summarize: after 5 years of awareness-raising and training, the Parental Society along with the Opleidingscentrum Autisme organised a big conference on Autism and Education. We invited people from the Ministry of Education: we wanted to show that there was enough theoretical and practical knowledge in Flanders to at least start education programmes that specialised in autism. Our speakers were parents, a paediatrician, a teacher/educator, an inspector of special education, and me. The conference seemed successful… (Though afterwards I discovered a not unimportant ‘detail’: our Minister of Education at the time had a grandson with autism… It helps if someone has experience and not just book knowledge…)
It reminds me of another similar ‘anecdote’ that helped TEACCH become a state program. Eric Schopler, founder of the program, had first studied in Chicago. His professor was Bruno Bettelheim (aka ‘Benno Brutalheim’). Schopler refused to accept –as Bettelheim did – that parents were the cause of the strange behaviour in autistic children and when he had finished his studies he asked funds from the North Carolina government to show that it was possible to have a relationship as co-therapist with parents of these children. These days this seems obvious but then it was considered ‘revolutionary’. But after three years of collaboration during which they developed a.o. a diagnostic tool (the CARS, Childhood Autism Rating Scale) and an assessment tool (PEP, Psychological and Educational Profile) the money ran out.
Was it possible that parents and professionals who had worked together in such a friendly supportive way now would have to lose everything they had been building together?
They decided to lobby politicians. Eric Schopler, a very brilliant professor, but at the same time very down to earth, with his feet planted firmly on the ground, knew that they were not going to get what they wanted with mere rational arguments. Nobody understands autism in theory only with no practical experience. I think he knew beforehand that politicians would say things like: “Oh yes, we know about autism, it is about a different development of verbal and non-verbal communication, about children who have difficulties understanding our behaviours… etc.” They might have thought they ‘knew’ but they did’t ‘understand’. At TEACCH, they decided to give them that experience…
The day before the senators would vote on whether TEACCH would become a state-program or not, they were invited to a meal. They showed up but did not know that each of them would be sitting next to a person with autism… Moreover the most important senator was a bit late and there was only one place left: next to someone with, shall we say, a ‘challenging’ behaviour…
The next day they all voted ‘yes’. The ‘experiment’ had worked.
Don’t get me wrong. Of course, this was not the only contributing aspect. Schopler and his colleagues had also developed handbooks that showed how to diagnose children, how to develop individualized programs that had the potential of being a source of inspiration that would also help non-autistic but atypical children…
You also published a book in 1984… ‘Uit zichzelf gekeerd’. (It could be translated as: ‘Active but strange. Learning processes for children with autism and handicapped children with related forms of communication’).
Yes, but this cannot be compared with the enormous work that had been delivered at TEACCH. By the way I had also translated the PEP (Psychological Educational Profile) into Dutch. This also has been helpful. ‘Uit zichzelf gekeerd’ isn’t sold here anymore, but in France it continues to be published with the title ‘La Forteresse Eclatée’, as a reaction to Bettelheim’s book ‘The Empty Fortress’.
Kees Rood, a pioneer in the Dutch parents’ association, has played an enormous role also in the early years. First of all he published all my interviews in ‘Engagement’, the magazine of the Dutch parents’ association. And he has also pushed me to write the book ‘Uit zichzelf gekeerd’. Most of the book was written in Llança (Cataluna, Spain) where we spent holidays together. The book lies here in front of me and I read: “An extraordinary word of thanks to Kees Rood who chased me from Velp in the Netherlands to Llança and then to Antwerp, where he sat on me and kept looking and pushing till the book was finished”.
This book ‘Uit zichzelf gekeerd’ contains many elements that have become more or less a big part of the basis of education which specializes in autism:
During ‘The Experiment in Autism in Special Education’ an inspector told me: “All teachers have an IEP for each child, at least in their agendas, but it is only thanks to the experiment in autism that they now also have learned how to develop it.”
Another inspector: “The experiment in autism is the best thing that has ever happened to special education in Flanders.”
And at the end of the experimental years it was called ‘a spearhead of special education’.
This is surprising because in the beginning it was almost seen as an kind of declaration of war…
This was a painful period. I still remember ‘the official installation’ of the experiment. The Who is Who in the three school nets were invited and (let’s call him) the boss of all the inspectors had a few things to say, especially about his objections against the experiment.
First: it was a scandal that this experiment had been admitted without having consulted the inspection and having asked for their agreement…
Second: if you talk to the mothers of these children, you understand immediately where all their problems come from…
It is easy to understand why we hadn’t consulted the inspection: if we would have followed the usual hierarchical way, the experiment would never have seen the light…
And second: about the role the parents play… I answered him on this question and from then on we knew that our work wasn’t going to be easy…
And so it turned out: we had wonderful partners who defended the project with heart and soul, but the other ones… I had the impression that they had been selected to suffocate the project as soon as possible…
That whole period helped me to be less romantic and naïve, because I had never known before that such ‘thick skinned elephants’ existed whose only interest consisted of keeping the power, at any price. Autism itself seemed almost superfluous… And instead of being respected as ‘liberators’ we were treated as ‘enemies’. I don’t want to mention names. And now looking back upon what happened more than 25 years ago, I still do not understand very well how we did to survive. I think it was due to the support of parents, the very committed teachers, the paramedical staff, and a number of directors and inspectors. And of course not in the least due to the children with autism themselves who through their behaviours showed that educational strategies (such as offering predictability, visual help, non-verbal communication) had been efficient. I am still very happy to have had the responsibility of organizing the trainings during the experiment. It has had lasting effects…
Isn’t it strange that the Opleidingscentrum Autisme started for purely Flemish needs and that in a minimum of time your center got invitations in almost all European countries and even outside Europe…?
Yes, this was a big surprise, also for me. So much happened in such a short time. I should have taken notes, I have forgotten so many details. It started in France. During my TEACCH-months I went to a National Autism Congress in Washington, organized by the American Parental Society. In the lift I met a nice French lady who looked at my badge, saw the name Belgium. “Vous parlez donc Français?”. She was astonished that I preferred to continue the conversation in English “et cela pour un Belge…”.
The lady was Chantal Trehin, who as a neuropsychologist and mother of a son with autism, has played an important role in Autisme France, the French parental society that wanted to get rid of the psychoanalytical approach in France and start with an educational approach. (As Roy Grinker writes in his book ‘An Unstrange Mind’: it were the parents who pushed the French government to accept autism as a developmental disorder, not the psychiatrists).
She invited me to come to France for a few conferences in autism. Me? Having to talk French? I started reading French newspapers and easy books. Ok, I was motivated to come to France, but accepted to speak only three hours in the afternoon (after my jogging in the morning to be in good shape…). I had the written text in front of me… but during question-and-answer time I didn’t have a written answer… People found that my ‘spontaneous’ French was a lot better than the written version. This was very encouraging. I became the first trainer of Ediformation, a centre for training in autism, founded by parents. Years later I still had this typical nightmare: I was in the middle of a conference and did not remember any French words…
So, this was France, but other countries followed. The need to know more about an educational approach in autism did of course not exist in Flanders only. And so I gradually gave up my lessons of literature to become a full-time director of the Opleidingscentrum Autisme. I have to admit that this function of director – and all the administrative and financial responsibility that goes with it – was not at all ‘my cup of tea’, but someone had to do the job…
Lorna wing once said how surprising it was that just one individual could have so much influence in so many European countries…
It would be too pretentious to think that it all had to do with my ‘talent’ as trainer. But yes, I had written for children and had as a basic rule: ‘If you cannot say in simple words what you have to say, it just means that you haven’t understood the subject well enough…’.
Overall I think it mainly had to do with the circumstances. I had been lucky to learn a lot at TEACCH and this made that I knew not only the theory but also the educational consequences, or at least some of them and this was very exceptional in the 80s. Now, 30 years later I cannot imagine that I still could have that kind of influence, but then… I am still happy when I think about it – I had the chance to do something very important for so many people…
Moreover, the type of message, the very humanistic approach, it was what many people were waiting for, it was what many professionals and parents had hoped, but now there was at least someone who also said it: autism is not in first instance a psychopathological problem, children with autism are in first instance children, only their problems are special and needed to be understood much better.
The earlier approaches of autism emphasized too much the psychopathology – autism was seen as a mental illness or psychosis: see how different they are… Think of the early books on autism ‘The empty fortress’, ‘Stranger among us’, the very differences… It is in a certain way ‘normal’ that many people are afraid of what they do not understand, but this attitude leads to very important ethical and social consequences: children with autism were put outside of the ‘normal’ world.
And now with this new ‘developmental approach’ they were again where they belong: among us. ‘The typical people and the typical child’ and ‘normal development’ became the basic reference, the point of departure to try to understand persons with autism. Parents told us: ‘You talk about autism, the way we see our children…’.
Your experiences outside Belgium…? I know that it is too much and too long to talk about them, but please give us some anecdotes, insights, surprises…
Let me start with this: I received a lot of support from many important people in the world of autism. Honorary members of the Opleidingscentrum Autisme (OCA) were Lorna Wing, Eric Schopler, Gary Mesibov, the advisory committee with Simon Baron-Cohen, Joaquim Fuentes, Gunilla Gerland, Francesca Happé, Demetrious Haracopos, Pat Howlin, Rita Jordan, Kathy Quill, Bernadette Rogé… an exceptional group…
There is so much to say about our experiences in and outside Europe (who needs general information about autism in the world should read ‘A history of Autism’ by Adam Feinstein and/or ‘An Unstrange Mind’, by Roy Grinker).
People ask me sometimes to explain about Autism and Society, starting from anecdotes. A few are almost unbelievable, but true. After one of the first conferences in ‘the country of precision’ a father asked me whether it could be true that his son had autism because his grandfather had made love to a nun. This is what he had heard from a psychiatrist about possible causes of autism.
When they tried to tease me in France by telling jokes about ‘the Belgians’, I always answered: first, you should be ware that this is probably about the French speaking Belgians, not about the Flemish and second, stop now because otherwise I’ll start talking about psychoanalysis and autism in France… and these are much stronger stories…
Germany then. Leo De Haes, my publisher, contacted a German publisher at the Frankfurter Buchmesse. He presented my book ‘Autism. From Theoretical Understanding to Educational Intervention’, said that it has been published in a dozen languages but not yet in German and whether he was interested in a German translation. No, he was not interested, because ‘We already have a book on autism…’.
About ‘autism and sexuality’ in the Middle East there is so much to say, especially about the different attitudes from women to men (very different), and so on, and so on.
One of the saddest anecdotes comes from Chile. A very nice pre-school teacher welcomes her new little darlings in the beginning of the school year:
“And here in my classroom you are the small deer, and you are our little butterfly, and you are our little nightingale…”.
(and then she saw Pablo – who later turned out to have Asperger’s syndrome).
“And you are our little nino caracol”.
Little Pablo was angry: “No I am not a caracol. I am Pablo”.
“But in this classroom…”
“No no no, I am Pablo!”.
A challenging behaviour! The teacher needed to talk about it with the parents. And the parents needed to talk about It with the psychiatrist… A few weeks later Pablo returned to the classroom and accepted to be ‘el nino caracol’.
He was under medication…
But more important than these anecdotes was that we were able (thanks to my TEACCH training during one year) to introduce a new way of thinking about autism, also about other ethical aspects. (who likes to read more: ‘International Priorities for Developing Autism Services via the TEACCH-Model’, International Journal of Mental Health, 2000, Vol. 29, n° 1 and 2).
We had hundreds of conferences and trainings in Sweden, Denmark, France, Italy, The Netherlands… Later professionals in these countries started organizing their own trainings, often inspired by our work. This is the normal price you have to pay for progress…
But really painful in the history of our Opleidingscentrum is that a whole group of colleagues left us and founded ‘Autisme Centraal’ (just after we had bought a completely new building, since the number of professionals we worked with had been growing all the time). (Some called it a ‘Palace Revolution’, other ones called it a Freudian ‘Murder of the Father’).
Anyway, they took with them all our addresses, copies of our trainings, year long notes that they were going to use to publish books, without any reference to us, not even to TEACCH. Not really correct, but that is the way it goes more and more in the world of social business. Looking behind me I see that many have used our Opleidingscentrum as a springboard to new promotions. The model of a practical training I had learned at TEACCH was also being used more and more in other countries, sometimes they still mention it TEACCH-training, many do not even remember anymore where the inspiration came from.
I know that you made a lot of efforts to stimulate ‘official’ courses in autism with an ‘official diploma’.
Yes, logically. From the beginning when we started with courses, I realized that these courses had to be organized by the government, the universities, the schools of higher education and not by a non-profit association as the Opleidingscentrum. Gradually the trainings should come under the responsibility of other authorities. This is what finally happened in Flanders.
Now, we see that almost every school and residence/group-home has his own trainer who organizes courses for his colleagues. This is very positive, but there is the risk of the ‘Annie-tells-Suzie-effect’.
Annie-the-single-trainer-of-the-school goes to a new conference, then passes the message to Suzie who passes it to Frank who passes it to Ellen… At the end there is very little left of the original message… At the end one doesn’t have much coherence anymore, it becomes more and more a patchwork-approach. It reminds me a little bit of how we began.
In 1981 when I started organizing courses we did what we could: a five-day introduction to autism here, a course on communication there, collaboration with parents, the role of visual help, the assessment and development of an IEP for children, for adolescents, adults… But what did we see after a certain time? Speech therapists only came to the course of communication, psychologist only to assessment days, but nobody was or felt obliged to take all the courses in order to have a more global training, to become a ‘generalist’ in autism before specializing in one or other specific area …There was no coherence and we felt that a society should accept that a training in autism was more than a superficial commitment, because otherwise all parties concerned would continue to be too vulnerable.
Persons with autism guided by professionals who had a completely crippled understanding of autism. Impossible to accept, after all, autism is a pervasive developmental disorder.
Then parents who have the impression that there children are being seen as guinea-pigs… And it is only when behaviour problems become too serious that one starts organizing trainings, if the children had not been sent from school already, because of ‘behaviours’ that often are ‘normal’ for a person with autism.
And then the third party, the carers themselves were also neglected and suffered the way parents do: one is so motivated to help a child, but one doesn’t know why the motivation risks to turn into burn-out. Sometimes one had to endure crazy situations…
In a European country (it is better not to mention the name) carers told us that their two days of training were the only ones they received and on Monday they had to start teaching the children with autism in the classroom.
‘Hadn’t you told the inspectors then, that this is not possible?’
‘Yes we had, but they simply said: search the internet, there is so much information on autism.’
And then besides the children, the parents, the carers, there is of course the important role of the politicians. If one doesn’t have the necessary means to develop individualized programs for children with autism, then all trainings are half superfluous. Here the society in itself has a very important political and ethical role to play. Quality of life of a person with autism and his family depends more upon the type of society he lives in than upon the severity of his autism…
So we started pushing Flanders but also other countries to set up courses with ‘an official certificate’ or ‘diploma‘ in autism. This was a good idea, because many students prefer a ‘real diploma’ instead of a certificate of a non-profit organization. Also, funny but interestingly enough, students at the end of these ‘long-term courses’ understood how much there still was to learn about autism, whereas other persons who had just five training sessions sometimes believed they already knew enough… These people represent a danger for autism.
But despite all the advantages, this evolution also has its negative aspects: first one sees that several persons only come for ‘the diploma’ and its sometimes financial advantages that go with it, and without any real motivation they call themselves ‘autism specialists’ anyway (with the label close to the doorbell).
And second, one sees (and of course there are very nice exceptions) that universities and schools of higher education, now that autism is officially accepted and there are no more risks, feel more or less that they ‘own’ autism courses and leave many autism courses to professionals who have a lot of book knowledge but who may have never seen persons with autism. That’s a deadly move…, because just as persons with autism they may have a lot of ‘book intelligence’, but little ‘world intelligence’. And autism in encyclopedias is very different from autism in the wild world…
One sees more and more then that young let’s say psychologists have a diploma and book knowledge and then they meet their first parents of a child with autism and what these parents tell them about autism is so different from what their professor told them (‘street smart’ versus ‘book smart’) and then humility comes into the picture…
Do professionals have the courage to tell parents, yes we have a diploma, but you have a different knowledge, we may have a knowledge of autism in general, but you are the expert of your own child, so let’s put both forms of knowledge together…
If you do not have this type of humility then you’re wrong… Humility is a very important characteristic of ‘an autism specialist’. (I may talk about that more later…)
to be continued…