National Association of Parents of Autistic People
Eric Schopler literally revolutionised thinking about the causes and management of Autism by combining the diverse services of State Government with the crucial contribution of families: we, too, must devise a similar comprehensive strategy. The goal of our programme must be to make citizens the main players in the creation of the common good, and to guarantee a dignified future for people with disabilities and their families. Each according to the best of her or his ability.
‘Politicophobia’ is in the ascendancy. In recent months, not a day passes without loud protestations against the political Úlite who have been governing us during the past decade, both at national and at local level.
In interviews, public opinion is stark and pitiless, and does not discriminate between the good and the bad politicians. Condemnation is as vicious as the gap is wide between the lives of ordinary people and those of the ruling class. That gap is mercilessly magnified by the media.
In past ages, human beings had realised that living in a society was advantageous, for increasing the chances of survival; however, their natural environment was then more hostile, and overall knowledge was less advanced, as were the means at their disposal for improving the environment. Solidarity was a necessity rather than a virtue, and was an integral component of everyday life.
As further evidence for this, some sociologists have detected a different motivation provisions in social welfare in Canada as opposed to the USA, Canadian welfare provisions being more socially liberal, in view of the much harsher conditions of the Canadian population, who live much closer to the North Pole.
Nowadays, we are condemned to ‘self-sufficiency’. When we go to the ballot box, we elect those who will decide how we are going to cope on our own, i.e. whether conditions will be harsh, or will be mitigated through some compensating mechanism provided by society.
In regard to this, factional interests are of concern to us, in that they are incompatible with the responsibility of representing our overall interests, which we entrusted to our representatives within the Republican institutions when we voted. That responsibility, however, must not involve carving up, dividing up, grabbing, bartering, taking over or blackmailing, but it should mean optimal administration of the ‘common weal’ on behalf of and for the benefit of the Italian people.
Thus, the word ‘politicophobia’ seems misleading, as if it had been purposely created by a self-serving system, the goal of which is to deflect the less careful observer.
It would be more appropriate to talk of ‘powerphobia’, in order to highlight the fact that those who denounce corruption are not ‘isolated plotters’ intent on fighting against the political Úlite and its ramifications. The opposite is true: those who denounce the gulf between the political class and people’s day to day lives do so because they perceive that in Politics (with a capital P) there exists a privileged pathway towards the common good, and understand the urgency of action.
Today, dispensing with politics is a luxury which we, parents of disabled children, cannot afford. What we mean about ‘politics’ is not, however, collusion with the people in power, but a mediation between what is ideal and what is feasible, comprising all the areas in which our children are operating now and will continue to operate. This must be done while ‘flying high’ and thinking big, while keeping our feet firmly on the ground.
This was taught to us by Professor Eric Schopler, who died nearly two years ago. He had literally revolutionised the approach to Autism, and we younger parents were able to know him thanks to the determination of the leaders of ANGSA (National Association of Parents of Autistic People) and the professionalism of its Scientific Committee.
We know Schopler as the scientist who, in the 1960s, debunked the spreading ‘psychodynamic theory’ which interpreted a child’s autistic behaviour as the consequence of a lack of affection by its mother before and after its birth.
We also know Schopler as the founder and head of Division TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren), whose philosophy of intervention can be summarised in the principle of global care. This principle involves a personalised educational programme executed, post-diagnosis, with a view to achieving optimal autonomy and integration.
One aspect of Schopler’s work we have been unable to study in depth, owing to personal circumstances, is his strategy in lobbying the institutions, society and political class of North Carolina.
We have therefore asked Carlo Hanau to describe how Schopler built up his Division TEACCH. Carlo Hanau is a lecturer in Social and Health Services Programming in the University of Modena & Reggio Emilia, and editor of the journal ‘Il Bollettino dell’ANGSA’.
On Carlo Hanau’s words: <<Schopler built up his network of services, by which Division TEACCH has become famous throughout the world, fitting the human services of North Carolina into an integrated programme comprising schools, social services and health, and drawing on the whole-hearted cooperation of families of autistic people, who were always an extremely important component of his therapies.
Schopler was instrumental in creating a far-sighted strategy for these children, whose lifetime is as long as anybody else’s: we must visualise each child within the perspective of adulthood and future ageing.
TEACCH means a strategy by which all operators cooperate within a close alliance aimed at improving each child’s skills, and at the same time adapt the child’s environment in order to narrow the gap between what each patient is capable of doing and what their social environment expects.
To this end, as a University professor, Schopler was able to train in his School a large number of experts who are continuing his work today, after his death. None of this could have been achieved but for the support of his State politicians, who allocated funds and determined the integration of the various services. In this way, they were able to achieve positive outcomes, while employing more modest resources than those frequently used in an uncoordinated and chaotic manner in Italy, since in this country we often find a lack of coordination and specialisation, so badly needed by autistic patients of all ages.
We maintain, therefore, that one of our priorities must be the training of health professionals such as case managers, capable of undertaking the coordination of diverse services and of designing and frequently assessing the implementation of individual assistance programmes. Families also need to be appropriately trained through a professional strategy drawing on the correct procedures which have been experimented with up to now.
An experiment of this kind has been carried out in Lazio through a project named Autismo ed Educazione Speciale, devised by the Regional Minister for Social Policies, Alessandra Mandarelli, and executed by me as representative for the University of Modena and Reggio Emilia, in collaboration with TEACCH experts such as the Roman specialist, Flavia Caretto.
Lobbying politicians to undertake their responsibilities will provide an antidote to the epidemic of ‘politicophobia’ which is spreading in this country, and is the model we recommend to parents and their local associations>>.
* ANGSA Veneto ONLUS (Associazione Nazionale Genitori Soggetti Autistici).