National Association of Parents of Autistic People
Milan, January 2002
In broad terms, TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren) ought to mean
how to organize educational strategies to treat Autism and other related handicaps. These strategies relate predominantly to a scientific, cognitive behavioral model. Moreover, we constantly need to address the issue of quality in all services offered or administered by organizations of this kind.
Here in Lombardy, ten years after the establishment of training facilities designed for this kind of approach, we don't have any organization along these lines, nor has a model been proposed for an even remotely professional policy of intervention. We are still at sea tossed about by the waves with everyone rowing whichever way they like. And this has been happening even within parents' associations!
The overall effect has been confusing as well as counterproductive. TEACCH is now seen almost everywhere as a technique which is effective and at the same time risky. TEACCH is judged to be effective because it aims to simplify tasks, to personalize them and to organize them without clarifying the content of those tasks. It's like having a crate which we can fill with stuff or with nothing at all.
In our situation, due to the mistaken identification of TEACCH with the manufacturing of the crate, we found that the crate was empty, that it was necessary but not sufficient, and the result has been a sense of frustration, a feeling of uselessness and a tendency towards mechanical, self-serving procedures. Thus, in our facilities we see youngsters who continue to perform the same dreary tasks for years and years.
It is quite easy to manufacture the crate and a structure, but it is very hard to fill it with useful contents! To clarify matters, I would like to refer to the recent publication by Dr Micheli and Marilena Zacchini: Verso l'autonomia ('Towards Autonomy'), published by Vannini.
In Lombardy today, not a single centre can claim to be efficiently and productively administered in accordance with the TEACCH model. All the facilities which are allegedly inspired by TEACCH or its philosophy in actual fact only offer disjointed services causing even greater stress, due to the need to commute between different centres, even though each centre may be of excellent quality. Everyone pleads not guilty by claiming that they are doing their job, yet no-one will take the responsibility of proposing to the regional or any other authorities a serious policy of coordination resulting in a real duty of care towards autistic individuals.
Hence, somewhat negative criticism has been heard, but this was natural and unavoidable. Ironically, a programme which was deemed to be synonymous with order, good organization, simplicity and efficiency, and therefore a source of well-being for the autistic individual, has become something uncoordinated, cold, dreadfully stuffy, resulting in a migration towards something warmer, welcoming, maternal, user-friendly, i.e. facilitated communications and any other type of therapy, no matter how outlandish. Countless therapeutic procedures have been tried out in regard to autistic individuals. Unfortunately, they have remained autistic individuals and in many cases, unfortunately, they have disimproved. I have personally known many of these and have been able to verify the damage caused by any therapy which does not first of all consider the specificity of Autism. Anyone who claims to have understood the TEACCH philosophy and then operates like a robot, in a cold, rigid, efficient manner without infusing joy, involvement, satisfaction, pleasure and warmth in children, has not really understood a thing, either about Autism or about the TEACCH approach. Yet a serious approach intended not to demonstrate one's expertise but to ensure wellbeing first and learning later, requires long-term commitment, enormous patience, a deep knowledge of Autism and great respect for the individual. No training is involved, as we can only help individuals to develop in order to lead better lives.
We now need to ask ourselves an important question:
Is it possible, in Italy, to implement an organized program created in an Anglo-Saxon culture, a culture which has thoroughly researched and analyzed a cognitive behavioural, constantly updated model?
I could argue that here in Italy our DNA is imprinted with a psychodynamic, romantic, humanistic and verbosely interpretive model, so much so that as soon as we hear the word behaviour or behaviourism we feel alarmed, as when we see a venomous snake that needs to be fought. Those who believe that they have discarded the old model and have achieved a synthesis of the two approaches (something which, incidentally, is both possible and desirable) is out of touch with the everyday reality of the social services and in particular of those dealing with autistic disabilities. Training courses often turn out to consist of expensive hot air, or else social services do not offer the conditions required to make use of the training received. The result is frustration all round.
Is the main obstacle related to training and organization, or is it just cultural?
My view is that both factors play important roles worth analyzing, but such an analysis is not up to me, as I am just an educator.
Meanwhile, our services by and large offer care and a chance to socialize, plus the odd therapeutic treatment, but this is often improvised and, above all, is uncoordinated and unproductive. The real issue is that we have not been trained to think or work seriously and professionally: sometimes, in fact, we resist change by using superficial, unfounded arguments, perhaps in order to continue to harbour illusions or just for the sake of a quiet life; at the same time we lay our conflicts and our frustrations at the door of the supervisory institution, which is normally of a psychodynamic type.
Yet these very same institutions claim that they have at last taken the road of an educational and vocational policy, at least in regard to terminology.
Unfortunately, it's the power games, the red tape, and above all the inconsistency and inflation of policies available to the disabled and their families that cause the worst frustrations to the (few) well-meaning educators, teachers and other professionals. Families will clutch at straws anywhere, at any cost, in the vain hope that quantity will mean quality,
and that the proverbial rabbit will miraculously be pulled out of the proverbial hat: A MIRACLE!
It is the disabled persons, however, who cop it all, as they develop in physical size and in complexity of problems but regress in their cognitive and functional growth, i.e. in what would be most useful in daily adult life.
Whenever we come across oases of happiness, be it facilities, single classes or enlightened families, we are amazed by the striking improvements and by the satisfaction expressed by everyone, parents, health operatives and the autistic patients themselves, who express their satisfaction (and how!). Unfortunately, much more often they express the opposite attitude, through no fault of their own.
Alas, happy oases don't last very long, and with the beginning of the new year or with the unexpected replacement of a teacher all again returns to chaos. This proves that there is no organization to speak of, and that all is in the hands of well-meaning individuals, who demonstrate the high level of care at the same time as its weakness.
Meanwhile, in behaving in this way, the competent (or perhaps incompetent!) authorities continue to squander taxpayers'money, through grants and a thousand wasteful initiatives according to the political mood, the level of support or the persistence of the begging bowl!
In my view, change must start from the bottom, and specifically from families and health professionals, who must at last realize that we cannot continue to improvise, live from hand to mouth or indulge in emotional talk unconnected to operational outcomes. It should be quite clear how an appropriate procedure needs to be set up. If we don't adopt it, this may be due to lack of organizational or professional skills and at times perhaps be the result of obsessive power-driven ideological attitudes. Professional qualifications must not be used as empty shells designed to impress, but must go hand in hand with an ongoing commitment to keep abreast of, and update one's knowledge, so as to achieve lasting outcomes based on increasingly scientific procedures. All of this can only be achieved if the education of disabled patients is based on an efficient organization whereby human and material resources are administered on the basis of qualitative criteria shared by families and health professionals, rather than imposed top-down as if working with people were comparable to an assessment of soap powders!
Unfortunately many health professionals, having lost their confidence and being driven by understandable fear, are refusing to face up to the issue of organizational efficiency, thus leaving gaps in space and time in a kind of unproductive vacuum which easily leads to apathy rather than to quality of care or job satisfaction! Productivity in all areas, including spiritual, emotional and relational fields reminds us of a duty to translate our intentions and our words into concrete, tangible and universally verifiable achievements. My remarks are not meant to detract from the commitment of those health professionals who are bly dedicated to their work, yet achieve unsatisfactory results. From these stems the facile criticism of those have little first-hand knowledge of disabled services, yet pontificate at conferences on achievements and expectations as long-lasting as soap bubbles: at the end of a conference they all dissolve, leaving a taste of bitterness in families and health professionals who, on top of it all, feel that they have been taken for a ride.
How can we get out of this impasse?
We do not need to demonize anyone, but we do need to realize once and for all, in this day and age, that resources must be efficiently utilized and productive, verifiable structures aimed first of all at achieving real well-being are a precondition for the proper functioning of facilities for the mentally disabled.
It is about time that we should discard the old-fashioned notion of a service in favour of a new model run as a dynamic facility where all components are given the most realistic and personalized role to optimize the environment and ensure everyone's well-being.
As long as disabled people are being serviced, one cannot claim that they are being educated towards adulthood, deriving satisfaction from what they do.
In such a dynamic environment each member is an integral part and is given well-defined responsibilities, as is the case in every family. Smaller children need to be looked after; older children will be taught to perform certain tasks which they will be expected to complete; the oldest will be independent and contribute to the keep and management of the family, along with well-defined responsibilities.
In regard to mentally disabled people, and all the more in regard to autistic individuals, it is of the essence to take into account their actual development and then either look after them totally whenever necessary, i.e. in severe cases, to ensure a good quality of life for them or to maximize their potential and skills when they do exist. Unless a genuine, effective assessment of individual skills and interests is carried out, we cannot talk of vocational education, but purely of a sterile assistance, or worse still, of inhuman training! Present-day facilities end up spending time and investing enormous quantities of energy on unscientific, unassessable projects based on the prioritization of progress reports and all manners of workshops devoted to diverse, often useless crafts, whose output ends up in a rubbish bin or is artificially marketed by charities.
Yet every facility for the mentally disabled and specifically for autistic people employs staff who could, should and would like to work and ... produce, with great personal satisfaction and savings benefiting the whole community.
How can Autism centres, so far tenuously monitored but not created by our Region, become dynamic centres? All centres have been created either through the initiative of families or institutions, or of some health professionals who steered the pre-existing old-fashioned centres towards solutions more appropriate for autistic individuals. I am probably overstating the case when I say that some of those centres are stagnating both in terms of projects and of motivation. We really need a shock therapy to bring back vitality and quality outcomes to the cause of autistic individuals and their families. Vitality and productivity cannot be reduced to economic criteria, which are necessary but not sufficient. Seemingly, we only seem to be concerned with these.
At the end of the day we can and we must examine the formulation and the philosophy of the TEACCH program.
We must make the Regional authorities and their officials realize that these families and their children urgently need a program which will look after them for the rest of their lives in a coordinated fashion rather than through stopgap measures wasteful of taxpayers'money but totally unable to reduce their problems.
All funding, whether it comes from the State, or from a Region or a local authority, or from private or family sources must be channeled into one basket (I don't agree that all aid should be free of charge, as one shouldn't t look a gift horse in the mouth). That basket must represent a commitment by the Region to look after all autistic individuals, for whom a coordinated and coherent intervention program must be formulated, appropriate to their age and their intellectual and emotional level.
What type of project can we advocate to realistically resolve all problems encountered by families with autistic children?
The long journey to resolve problems ought to start from the regional diagnostic centres which should assess all reported children. A proper diagnosis of an autistic condition and a deep-reaching assessment of skills are such diverse issues that no health professional, however experienced can claim competence in all of them. A multiple assessment would thus be the only way to ensure a reliable diagnosis on an autistic child's developmental level. It would also be a way of avoiding tiring, expensive and counterproductive journeys. However, everyone claims that a correct diagnosis and an early, effective and specific therapy can substantially improve the autistic condition. I should stress that improvement is not synonymous with resolution or cure, and that improvements are relative to the seriousness of the autistic or mental condition, to the chosen therapy and above all to the way a therapy is administered.
A Facility ought to be wholly responsible for each child and its family, and ought to cooperate with the child s school in the formulation of the most appropriate intervention program. The child s school then ought to autonomously equip itself (will that ever happen?) so as to ensure an appropriate education and teaching for each child, by consulting a diagnostic centre rather than expecting an inappropriate vicarious cooperation from the family, if it (the school) does not wish to renege on its duty to provide an education for everyone.
Legislation in this area is quite clear.
In fact, legislation prescribes the utmost cooperation and integration of responsibilities, certainly not an exemption from compulsory education. We find ourselves in a paradoxical situation! Families are quite often politely asked to keep their children at home: what an incentive to criminal behavior!
At the end of compulsory education the diagnostic centre will place its charges in the most appropriate venues. When patients reach the age of majority, the centre will also arrange a transfer to an adult Facility which will take care of patients for the rest of their lives.
All of this will be possible only if a PUBLIC PROGRAM FOR THE CARE OF AUTISTIC INDIVIDUALS is provided, in other words an Italian equivalent of the TEACCH program.
Is that so very difficult? I don't think so.
To quote Theo Peeters: is this a partly political problem, or is it a wholly political problem? We continue to cultivate our vegetable plots, often fencing them off so as not to let our neighbours see our lettuce (how petty!). A vegetable plot may be acceptable as an experiment, but after nearly five years of experimentation with Autism centres, is it not high time that we crafted a serious, realistic project to present to the Regional authorities? In this way, all necessary resources will be channeled in one direction, so as to ensure a first-class, effective and efficient intervention. What are the coordinators of Autism centres waiting for?
Those who reject the logic of a constructive cooperation towards the creation of a public regional program for the care of autistic individuals do not understand much of the specificity of the problems of Autism.
They entertain pipe dreams of a normalization and haphazard integration, thus ignoring what intelligent autistic individuals would confirm:
first of all, these individuals should be treated with respect (unfortunately, they do not vote!); they are not sick and they are not rotten;
moreover, we should try to get to know them in accordance with our convictions;
and finally, we should work hard together to build bridges between us.
However, building bridges requires scientific projects and true believers.
I hope 2002 will be a productive year for all who firmly believe in the possibility of ensuring a decorous quality of life to autistic individuals and their families.
Antonio Rotundo (*)
(*) Volunteer Advisor with ANGSA Lombardia, will be available for talk at Head Office subject to appointment.