National Association of Parents of Autistic People
The importation, transmission and application of the TEACCH program in Italy has been a chronic source of a serious, albeit unintended, misconception. In particular, there has been an inability to differentiate between the organizational and the educational aspect of the program, and also between the (uncontroversial) philosophical aspect and the practical implementation of the program, which is objectively difficult in the Italian context. Evidently, these different levels coexist 'peacefully' and beneficially within the TEACCH Division in North Carolina, where they originate from global, coherent and shared research, whereas in Italy, and no doubt elsewhere, there has been confusion between program, method and educational content. This confusion is ongoing, and we are aware of its deleterious consequences. To deny or play down such consequences, is a grave error which explains our state of confusion.
Moreover, the very nature of our welfare state makes it more difficult to implement any kind of holistic strategy. TEACCH is a holistic strategy based on a cognitive-behavioral model within a context consistent with an orientation towards ongoing, innovative and scientifically productive research.
In Italy, it might perhaps be preferable to stop referring to TEACCH, an overquoted acronym, and start instead to refer to integrated educational therapies for autism and mental retardation (as prescribed by the Denver Model), as well as to total care programs capable of being replicated and adapted in diverse contexts and at diverse levels of severity of disability.
We should not blame the various therapies for our inability to implement them systematically, scientifically and consistently.
The general consensus is that there is no one method, treatment or technique for autism. However, the efforts by responsible professionals over the past few years may bear fruit, and yield something useful, something good: a golden nugget, however small it is, can be produced by anyone who works conscientiously. I regard it as sacrosanct to acknowledge those who discovered these nuggets, as we do with bibliographical references whenever we write a scientific article, or an essay of a personal nature.
We are all now humbly beginning to review, criticize, to compare and contrast, and to show interest in what others are doing. In this way, we shall be able to continuously integrate all new unifying elements. The alternative would be a ongoing state of confusion in which anyone could generate 'hot air' and continue to create false hopes. Recently, someone declared that being appointed as lifelong carer is 'essential' to radically alter an autistic syndrome! Unfortunately, 'being appointed as lifelong carer' is but a poor and partial carbon copy of a valid model (the Denver model) which is little known to Italian parents and health professionals. Once more, dear parents, watch out!
Perhaps, we will have to make careful choices. What is certain is that over the past thirty years many pioneers and single-minded researchers have gradually increased our understanding of Autism, albeit without yet attaining full knowledge of it. What is important is to select whatever works well, to avoid ostracizing anyone or, worse still, biting the hand that feeds us!
An expert on Autism, according to Theo Peters, like any other expert, must not be close-minded. He or she must be open-minded, must not stand still but must be dynamic; must not be vague but must be precise; must not be arrogant, but must be humble.
Humility comes from the constant daily challenge encountered by those who work or live with autistic individuals.
It is important to identify what is fruitful, and to incorporate it in a structured pattern, when it will grow and bear fruit.
All of this relates to therapies.
It is essential to separate educational methods and techniques for the treatment, facilitation or rehabilitation of patients from organizational and administrative structures. If we don't do this, chaos will result. All too often, we confuse a container with its contents, a program as a space-and-time organization with its educational contents and their implementation, as well as the implementing techniques. We confuse an apartment with those living in it, or with the culture or lifestyle adopted by each resident.
We must distinguish between the setting-up of a network of services suited to the day-to-day needs of autistic individuals and their families on the one hand, and on the other the application of educational and enabling therapeutic models within those services. Besides, we must also clearly define the contents, goals and objectives we set out to reach, through the application of such models and methods. I am quite aware that I am not the right person to clarify these aspects exhaustively, as they require a degree of knowledge and experience which I do not possess. I am also aware, however, that it must be done with a view to unifying what is best within a program of total care. There are many competent professionals with the necessary open-mindedness to test the theory of total care as well as its practical aspects: let us question them, let us follow them, let us listen to them. We have so much more to learn!
Humdrum as this may sound, we must also clearly distinguish between theory and practice. We often hear 'it should be done this way'; what is then the outcome of that 'it should be done'? There is always a wide gap between these two aspects. The gap can only be bridged by the art of the possible, which depends on the hard work of any hard-working health administrator or professional. We must always start off from what is possible, and progress along such a difficult path, while being inspired by theory and guided by the daily practice which constantly has to face financial hardships, contretemps of all kinds, and problems which are often impossible to foresee. It is easy to criticize, while actually doing the work is a very different thing! Let us proclaim from our respective pulpits what we are capable of achieving: I can state from experience that it is not an awful lot! Yet, we must make the most of it and so progress, one step at a time, towards what 'should be done'.
Saying 'it should be done' is pointless, and may only provoke anger and frustration with everyone, except for those who preach theory from the pulpit. We have a number of excellent speakers, the situational politicians, who claim to be able to be capable of doing this or that, when we all know how difficult it is to achieve what is essential and sometimes not even that!
Let us not overstate the word 'scientific', since we all know how little there is on Planet Autism that could be called really scientific, and generally capable of being replicated from all viewpoints. If we do not acknowledge this lack of certainty, even if only on the semantic level, we could be guilty of being unscientific and arrogant like all fanatics, i.e. those who are not prepared to submit what they believe in, or what they are doing, to a careful critical analysis. We should yet again distinguish a scientific method from some extremely difficult contents which we need to analyze and verify. A scientific outlook should mean an orientation, a guide, a tendency, never a certainty or a truth.
Science, too, must be a kind of wisdom: the art of objective measurement and the art of the possible married to everyday living! First of all, we need to do our sums in the light of reality. Only this attitude, coupled with persistent single-mindedness, can show us whether we are progressing or failing. The main task of science is this: knowing how to evaluate methodically the outcome of a project, of a procedure, of an attitude.
Let us remember that an autistic person is a human being, who deserves to be respected and listened to for what he or she is. Let us not propose interventions to turn an autistic person into something he or she will never be capable of being.
If we entrench ourselves, if we regard ourselves as 'better than others', if we look after our own patch, we will become embattled and waste far too many resources, or perhaps all of them, in absurd defensive operations which are quite useless to the welfare of patients and their families unless we still regard warfare as useful and necessary as the only factor for change. Let us not demonize one another then, as if we were enemies.
Sometimes, we witness polemical exchanges, lengthy and embarrassing debates, resentments due to trivial oversights, senseless grudges as if we had been fatally wounded in our personal pride. It is truly painful to continue to quarrel over one 'method' or another, as if one method alone were adequate to resolve the problems of autistic people.
WE DO NOT EASILY REALIZE THAT A PROBLEM DOES NOT DEPEND ON THE CHOICE OF THERAPEUTIC METHOD,
NOR IS IT SOLELY RELATED TO OUR OWN SELF-IMPORTANCE
The real problem relates to organization, programming and a holistic outlook, with a view to merging all available resources (of which there are many) into one single 'lifelong care' intervention in favour of autistic persons and their families.
There are too many methods. What is missing?
A COORDINATING BRAIN, CAPABLE OF COLLAPSING ALL THAT KNOWLEDGE
INTO ONE UNIFYING, REALISTIC, SATISFACTORY, GLOBAL, BENEFICIAL PROGRAM!
Who shall it be? The State? The Region? This or that Service? A private operator with a social conscience? One thing is certain: if we do not revisit and clarify the concept of 'LIFELONG CARE' for autistic people and their families, we will continue to offer possibly beneficial therapies; but it will be a bit like offering fairly useless hot meals, just adequate for the purpose of survival, to beggars who will continue to beg wherever they are; or like providing elegant patches on threadbare clothes,
unless these initiatives are placed within a global, unifying and coherent program, valid for the whole lifetime of an autistic person,
from the time of a definitive diagnosis.
It is only within a program of this kind (almost a contract between the provider of 'total care' and the patient's family) that it will be possible to justify certain treatments, therapies or techniques, or the intervention of this or that health professional or specialist. What is regarded as beneficial to a patient can and must always be sought where it can be found without forfeiting the principle of total care.
Moreover, an autistic child's family must always be given ample freedom to search for, and choose those therapies which are best suited to that child. This is a delicate issue which may be dealt with only on the basis of clear agreements.
Those who are concerned with Autism, for whatever reason, must confront the issue of a lifelong global plan within which single initiatives need to be placed, otherwise, no matter how outstanding their performance may be, they will demonstrate a lack of understanding of Planet Autism. Obviously, such a responsibility and associated choices will be relevant to those who administer services and institutions, not to individual carers.
For these reasons, there will have to be two levels: one level for therapies and one for lifelong plans. If we confuse the two levels, we will be wasting time and resources, and perpetuate the confusion.
It is only by adopting a practical form of cooperation among families (directed towards small repeatable projects rather than simple, generic clubbing), that institutions may be offered the opportunity to experiment with new organizational initiatives, targeted at autistic people. This has been done abroad, and to some extent in Italy (see e.g. Cascina Rossago), and now we need to give a lot of thought to how to continue with concrete plans to develop flexible, adaptable 'total care' programs for diverse needs, including economic and financial ones.
We need to identify the essential elements of any plan, just as we do with housing units: we build detached houses, penthouses, apartments with four or more rooms, or with two rooms or even with one room only: yet all of these comprise the essential elements for living!
This is what I mean when I talk of personalizing a plan: I could not afford to live in a penthouse or in a detached house, as I am quite happy in my one-room flat!
The implementation of flexible and repeatable plans for small numbers depends on parents having serious intentions to plan for THE FUTURE OF THEIR CHILDREN. Parents will need to create Foundations, or other agencies, through which to channel all their efforts, whether financial, intellectual or organizational; to attract all kinds of external resources in order to create a realistic plan, i.e. an 'apartment' suited to their needs. Parents will need to reflect on the cost of bringing up a child without any problems and without anyone else's help ... we will need to do the same in regard to those having problems, through a merger of all efforts and all resources made available by public and private sources.
Parents can unite to share a treatment, either on the basis of geographical proximity, or in relation to the seriousness of their children's condition, or for whatever other reason they may decide to associate. United they will stand: however, in order to be united, it is essential to give something up for the purpose of seeking and sharing common ideals and goals. These must be entirely directed to securing not just the present, but above all the future, both in regard to the necessary therapies and in regard to the organizational aspects, in the sure knowledge that each Euro and each sleepless night has been spent to advance one's own plan towards a secure situation for one's child. It is possible to achieve this!
I regret having to reiterate for the umpteenth time that you, the parents, are the only ones who can ensure 'total care' to your children, now and in the future, through the creation of your own plan. Outsiders, whether they are administrators, politicians, health professionals or volunteers, come and go, and you are well aware of it by now!
Do not expect to resolve your problems in a comprehensive, permanent way through the goodwill of this or that person, nor through the ever decreasing subsidies offered to you by public institutions! Anything is welcome, but it is up to you to make it work effectively over time!
If you associate effectively around plans, you will sooner or later succeed in achieving what you need even from public institutions, whereas if you continue to proceed as you are doing now ... you can see the results for yourselves!
It is important to be able to distinguish between national or regional associations of parents to deal with general issues concerning Autism on the one hand, and on the other, associations of small numbers of persons working exclusively on 'plans' for the benefit of their own children.
You know that each choice you make implies tremendous responsibilities, yet this type of choice is entirely up to you.
A global, concrete plan concerning small numbers may only be the fruit of a convergence of diverse people and specialties, but if anyone wishes to explore such an issue with me, my e-mail address is email@example.com .
(Advisor to ANGSA Lombardia onlus)