The not-for-profit Children and Autism Foundation has created a network of integrated services to provide care which goes from the early diagnosis of children to the construction of the working, social and housing autonomy of adults with autism, via "respite" services for families and training for professionals. This is a system of services which can follow autistic people globally and longitudinally, supplying at the same time support for all the resources which revolve around them, from their families, to schools and other agencies. Families, associations and agencies from all over Italy have turned to the Foundation.
Chronic pathologies destroy systems. Both socially and individually, human being are "organised" to lead a "normal" life, where this term is understood in its statistical sense. When something happens which goes beyond the normal expectations of life, whether it be important events which involve several individuals (disasters, conflicts, epidemics, etc.), or whether it be events which strike single individuals (accidents, illnesses, failures, etc.), the systems which are involved become "disorganised", entropy grows and uncertainty increases. There are events which are destined to fall within the status quo with a certain amount of information which can be reached easily – illnesses which pharmaceutical cures exist for – and other events which it is not possible to place within a state of "normality": for instance, pathologies from which one cannot heal. Autism is this: a state of chronicity.
The state of disability which autism provokes in the systems which are involved with it generates a very high level of entropy. Autistic chaos can, in some cases seriously compromise the quality of life of these systems, in others it can even compromise their survival (deaths due to accidents, murders, suicides).
To bring people affected by autism and the systems which they belong to back to an acceptable level of order and organisation, it is necessary to contribute to the interior of these systems with massive quantities of "information" or "negative entropy".
In the case of autism, as with other important chronic pathologies, it is not possible, at least with our present levels of knowledge, to intervene on individual to "normalise" them. Instead, it is necessary to reorganise the systems they belong to, to adapt them to the new situations represented by the pathology. It is necessary to give these systems a new "shape", a different "shape" to what we are normally used to, by working on their knowledge, on how they function and their culture.
These actions can only take place with "cures" and "training" at 360°.
Which way should this intervention work take? Who should be defining the outcomes? What are the dominant systems which establish what is right to do, what it is right to expect?
Everyone will reply to this question differently depending on where they observe the phenomena of autism from.
Society and services
• Behavioural changes?
• Gaining abilities?
• Reducing crisis episodes?
• Acquiring autonomy?
• Hope in a ?
• Economic sustainability?
The Children and Autism Foundation considers the needs expressed by these different systems legitimate and informative and as indicating, above all, a scale of priorities: 1. people affected by autism, 2. their families, 3. related systems. A scale which we have set ourselves to follow in analysing the needs and the consequent definitions of our intervention objectives.
According to our vision, it is right to consider the needs of any of the above cited systems in a transversal manner, just as it is right to recognise each of them, at the same time, as the subject and object of total care.
These needs are then spelt out in other requirements which can be acted on, at least partially: places, times, contents and procedures.
The collection of resources defined in this way is what we define as a "healing system".
All of these resources are "shaped", or rather structured to respond in adaptive terms to the need for organisational-cultural changes imposed by the chronicity of autism.
With this ethical aim, the not-for-profit Children and Autism Foundation has created a network of integrated services to provide care which goes from the early diagnosis of children to the construction of the working, social and housing autonomy of adults with autism, via "respite" services for families and training for professionals. A system of services which can follow autistic people globally and longitudinally, supplying at the same time support for all the resources which revolve around them, from their families, to schools and other agencies.
The Pordenone model has developed on the basis of:
a) precise epistemological references,
b) suggestions based on scientific research
c) input taken above all from the TEACCH Programme and Applied Behaviour Analysis
d) needs and demands of a cultural-territorial nature.
Firstly, the general system theory, secondly Cybernetics and in particular L. von Bertalanfy, H. von Foerster, G. Bateson, J.G. Miller, H.R. Maturana and F.G. Varela, have supplied definite ways of understanding for a global approach to the complexities of autism.
Starting from the consideration that human systems are open systems which exchange energy and information with other systems, that an individual is a organism made up of sub-systems which are part of "super" systems which contain them, it immediately became clear that any service aimed exclusively at "autistic people" without considering, on the one hand, their profound uniqueness (the genetic and functional diversity, differences in cognitive styles, interests, etc. manifested by these sub-systems), and on the other, the variety of proximal systems which they belong to (the family, school, working environment, social and physical environment, etc.), would not have brought effective results.
Since, as we have said, this "pathology" disorganises the individual who manifests it and his entourage, the "cure" must work at the same time on the person, his/her sub-systems (for instance, his/her CNS) and his/her "super" systems (the groups he/she belongs to) just as it must try to change and perfect the relations between them, using appropriate information, given that customary information based on neurotypicalness does not respond to the needs created by the autistic disability.
Suggestions based on scientific research
In the world of autism, as with other illnesses where clear, efficient cures do not exist, space is left open for the proliferation of the most bizarre types of miraculous or simply charlatan claims. The risk that families with a problem which is as dramatic as autism come across such offers of help is high, above all today when access is facilitated by the internet.
The choice of the Children and Autism Foundation has been to trust the results of validated scientific research, both regarding diagnostic tools and rehabilitation-education intervention work.
Little is yet known on autism, but enough is known to prepare intervention programmes which are validated and whose results can be objectively measured.
To this end, right from its outset, the Foundation has destined very significant levels of its budget to training its operators, to constant retraining and to constantly acquiring avant-garde testing methods. People who work at the Foundation have not only acquired reliability certificates for their curricula as diagnostic test administrators for our research and clinics, but are also recognised at an international level as certified trainers (for ADOS and ADI-R in Italy there are only two international trainers, one of whom works at the Foundation).
Input taken above all from the TEACCH Programme and Applied Behaviour Analysis
The total care model proposed by the Foundation uses reference points which have been validated by the international scientific community:
– the TEACCH programme
– ABA (Applied Behaviour Analysis)
The TEACCH Programme – Treatment and Education of Autistic and related Communication Handicapped Children – developed by the University of North Carolina School of Medicine at Chapel Hill, as well as being taken on and recommended by the SINPIA Guide Lines on Autism – Italian Society of Infant and Adolescent Neuropsychiatry – is referred to a model of care adopted by an organisation which is integrated with services using a longitudinal overview and is a programme which foresees structured teaching based on in-depth evaluation of the strong-points and weak-points of each person and on some principles of a general nature, such as: the organisation of the physical environment, the precise spelling out of activities, the use of visual aids and participation by families in the intervention programme. The objective is to empower the autonomy of the person and improve the quality of their personal, social and working life. Within this system, parents are considered to be the most reliable source of information on their own children and are involved in the treatment programme, both to enable the skills acquired to be generalised, and to guarantee a coherent approach to each activity (Schopler et al., 1980; Schopler et al., 1983).
ABA (Applied Behaviour Analysis) inspired by the work of B.F. Skinner, applies principles and rules of behaviour to increase adaptive abilities and reduce socially problematic behaviour. It is one of the methodologies which have proved to be effective in rehabilitation treatment for people with autism and is thus also suggested by the SINPIA Guide Lines on Autism. Many educational intervention strategies which are carried out at the Foundation make reference to the cognitive-behavioural approach and in particular to the ABA method. For ABA educational techniques, abilities to be taught are sub-divided into small units, which are defined in observable and measurable terms. Each component/unit is taught by the direct manipulation of prior and consequential events with the aim of increasing motivation and thus learning in its own right. ABA makes use of a repertoire of techniques which have been rigorously established: discrete trials, reinforcing, incidental teaching in natural settings, task analysis, chaining, prompting and fading, preference assessment, economics using tokens, alternative and increasable communication, etc.
Needs and demands of a cultural-territorial nature.
Another source of stimulation in preparing the Pordenone model has been an awareness that the needs of people with autism and the "super" systems that they belong to (families, social groups, etc.) are determined by the characteristics of the disorder, but also by the characteristics of the context, such as cultural events and territorial resources.
If within the family in Anglo-Saxon settings, events aimed at, for instance, acquiring autonomy may prevail, in Latin settings, above these, relational abilities are surely privileged. An anecdote which one of the Founders often recalls referring to the experience had by Italian and American families with autistic children is the following: "If we ask an American mum of a young autistic child who isn’t able to communicate, what she would like her child to learn when he/she grows up, she’ll reply "brush his/her teeth" or something similar, if we ask an Italian mum the same thing, she’ll say "call me mummy".
These are culturally different aspects which those who offer "cure" services must be aware of, however, from a global point of view.
The same goes for the territorial context, whether it be from an organisational point of view or regarding the typicalness of the resources which it contains.
Hypotheses for services cannot be proposed which are not coherent, in some way, with the existing legislation: a special class, which is normally provided for and hoped for in many foreign countries, would be absurd in Italy as there is no legislation which could uphold such a choice.
On the other hand, there may be territorial resources provided by specific traditions which can be drawn on for working towards real integration for people with autism. In choosing the working activities which the Foundation has created at the Art Workshop, for instance, the historical existence throughout the region of an important tradition of mosaic arts and the renowned international school of Mosaics was decisive.
Starting from the above mentioned references, in twelve years of work, the not-for-profit Children and Autism Foundation has developed a system of services which, in and of themselves, are a model that is ever more frequently visited and studied, by Italian and foreign experts.
The Pordenone model has its roots in experiences which have demonstrated the greatest efficacy at an international level, but at the same time is set – and can be set – in the cultural, legislative, social and health specificity of its context.
Grounded in evidence based methodologies, it is also characterised by the totality of its care, in all senses, for the systematic monitoring of its intervention work and its strong focus on and constant attention for the respect of the person, their inclinations and talents, their personal "pursuit of happiness" which all human beings, including those with autism have the right to.
There are no underlying mitigating ideas regarding conditions which provoke autism, but rather the belief that everyone, independently of the level of seriousness of the syndrome, can and must, not only prepare their own rehabilitation route in the strictest of senses, but also a life path which seeks as much as possible the satisfaction of the person and their total wellbeing.
The system created by the Children and Autism Foundation – with its comprehensive services and the quality of what it offers – brings concreteness to this philosophy, putting into practice a model which, in this way, is no longer theoretical, but is borne out in its constantly tried and tested application, which is calibrated and refined day after day.
Evidence of efficiency, monitoring and testing, and personalisation
As part of the model adopted by the Foundation, tools and methods are used, both for treatment and diagnosis, whose efficiency in clinical terms have been recognised as a result of evidence reported in the scientific literature and which, thus far, have not been rendered obsolete or replaced by new knowledge.
All our intervention work is constantly monitored and subject to testing. Six-monthly and annual follow-ups measure the care taken over the cases being followed, while forms for daily planning and checking record the progress of each single intervention, enabling its rapid calibration and regulation starting from the specifics of the case, at that time, and the training objective which is being pursued.
Each educational-training Project is tailored and personalised while taking into account the specific strong points and difficulties of that person, as well as their interests and habits. As a result, the didactic material, educational activities, but also cultural and free-time events are planned starting, as much as from the specific educational objectives which have been created on the basis of the outcomes of working evaluations and follow-up successes, as the tastes of the individual, with the maximum respect for their inclinations and interests.
The family of the person being cared for is considered a very important resource and is involved in all the phases of the diagnostic and rehabilitation procedure with specific parent training courses, systematic opportunities for exchanging views, the possibility of observing activities in the teaching room through the one-way mirrors and, not least, the chance to express opinions, make suggestions and comments with frequent surveys to reveal perceived quality and satisfaction levels on the services being used.
In the same way, proximal systems are also involved in the care Project right from the start: from grandparents to school mates, from teachers to doctors, to trainers and all those who come into contact with the autistic person and influence their well-being.
With the expression "taking total care" the Foundation is referring to an offer which can provide services and support to people with autism and their families at different times and in different situations in a lifetime, from diagnosis to the time spent "after us". Spot intervention work is therefore avoided, in favour of integrated, long-term, sustainable services which are rooted in the reference context in order to exploit and make the most of the resources which a specific area has to offer.
Presently, the Foundation’s network is made up of the following services:
• Diagnostic service;
• Rehabilitation and parent training services;
• Educational school-orientated and extra-curricula orientated services;
• Respite programmes (“Respite Villa”);
• Working programmes and programmes for autonomy, professional mosaic, information technology and packaging laboratories (“Art Workshop”);
• “Live the City” Programme for temporary residency and social inclusion;
• Training services and consultancy;
• Cultural, information, advocacy and awareness-raising activities;
• Projects for what comes “after us”.
With the term "total" the Foundation is also referring to their aim to understand a person with autism in their totality and therefore not only as a grouping of primary needs and problems linked to the syndrome, but also a person with all of their facets, rights and aspirations.
This approach is adopted as part of all the services in the network. The "Live the City" Programme, for instance, is aimed not only at building housing skills and autonomy, but also at enabling autistic people to live a life with the right support, which is as rich as possible, based on the right to choose and to have access to the cultural and free time activities on offer in the surrounding area in a prospective of possible full citizenship and social inclusion. With concrete proposals and personalised projects, what is being aimed at is, therefore, "abilitation" which also favours procedures for a personal search for meaning, with the assumption that the interior world of people with autism can be much more multi-faceted than is generally considered. To this end, Oliver Sacks wrote in the preface to his work, Thoughts in images, quoting the words of the scientist and writer, as well as person with autism, Temple Grandin, "I don’t want my thoughts to die with me. I want to have done something … I want to know that my life has had meaning. I am talking about the things that are at the heart of my existence."
A concept of totality intended in this way is also brought into being through study days and via the exchanging of opinions in order to face problems which are still too often ignored or are considered "embarrassing" when referred to people with mental disabilities, but which, nevertheless, are important and belong to life, such as regarding sexuality or health in its widest sense. To this end, in 2008, the Children and Autism Foundation organised an important convention entitled "Sex and affection in mental disabilities", while in 2009, with the event "Medicines and health in mental disabilities", it aimed to reflect on the right to health and well-being for people with autism, also presenting, at the same time, an important protocol for autistic people to the Accident and Emergency services which had been elaborated by the Foundation with the Pordenone Hospital Accident and Emergency Unit.
Respecting diversity and building a "territorial system".
The Children and Autism Foundation’s care model is based on interventions focused not only on autistic people "acquiring skills", but also on their right to be as much as possible happy. Indeed, the right to medical services is linked indissolubly to the right for everyone to live the happiest possible life. This is why rehabilitation at the centre is accompanied with educational activities outside and in the city, in everyday and pleasing life contexts, enabling skills and learning to be generalised and to take part in natural settings, getting people used to situations which, indirectly, can also represent relaxing and "respite" times for families.
In the same way, "rehabilitation" in the Foundation’s model, is not understood in any way as a sort of "normalisation", but takes place while respecting the diversity of the cognitive style which people with autism have in comparison with neuro-typical people. For instance, if working to eliminate or reduce self or heterogeneous-harm or socially "inappropriate" stereotypes seems to make sense on the one hand, on the other it does not appear to make sense, or be ethical to remove innocuous stereotypes from people, even if they are strange, but have a consolatory power for those involved.
Until these differences are accepted and where possible transformed into resources, our society, our territory, in a word our environment will have to be prepared as much as possible to accept and welcome people with autism. For this reason, an integral part of the Pordenone service model, is without doubt represented by training services, but moreover by information and advocacy systems which contribute to creating, even among those working in the sector, a culture which rotates around autism. Art exhibitions, cultural events, book presentations, and meetings with authors, are all elements which contribute to reinforcing the care network, widening it over to a create an area which over time becomes more welcoming, sensitive and closer to people with autism and their families.
The Foundation’s system of services – which provides for families, schools and other agencies to be involved, in what we have defined "taking global care" – aims, at the same time, moreover to build, day after day, a "territorial system" with exchange procedures which reinforce each other over time.
Quality is a very important element for the Pordenone model. Above all, management quality, as certified by the UNI EN ISO 9001:2008 Quality Certificate, which all the services can boast of, but also the quality of the services offered, the programmes, the training and the free-time events.
Questionnaires and satisfaction surveys and ongoing opportunities to exchange views also systematically reveal perceived quality, above all, from families and people with autism, but also from personnel, customers, participants in courses and other training events.
The concept of quality also regards what is created by adults with autism within our working and residential programmes: not puerile work to pass the time, but activities within workshops, such as the Art Workshop, which is wholly professional, where people work alongside mosaic craftsmen and women who trained at the renowned Spilimbergo School of Mosaics and produce works of art which are sold at market prices and are on offer to the public at prestigious exhibition centres.
Quality also covers, not least, cultural and free time events, within the Respite Programme and, above all, "Live the City", foreseeing not only passive enjoyment by people with autism, but where possible, also the planning of laboratory activities in collaboration with professionals and external realities in accordance with current models of experimental teaching.
A model such as what we have described thus far is strongly based on what can be defined as "developing talents" in the sense of a system aimed at making the most of the resources of people with autism, their strong points and their potential. The training events, the Respite Programmes, the Art Workshop, or, the "Live the City" Programme, all work in this direction, without losing the underlying rehabilitation focus.
The expression "developing talents" is also to be understood in its widest sense, since a system of services which is set up in this way also works as a "network" for people with autism and their families, but also for professionals who, in this way, do not find themselves working alone, but as part of a system which offers support, inspiration, opportunities for exchanging opinions and professional and human growth. On the other hand, for an educational-rehabilitation intervention to be effective, not only is a good method required, but also good therapists. Out of this arises the need for specialised professionals, suitably trained and up-to-date and, not least, professionals who, as Theo Peeters has sustained, are also attracted by diversity, able to work in a team, equipped with vivid and adaptable imaginations, humble, never satisfied with their own level of knowledge and with high pedagogical and analytical skills. If, doubtlessly, no method can teach these particular gifts of sensitivity, humility, and creativity, surely a total care system as has been described thus far can contribute to "developing talents" even in those professionals who try to find effective strategies everyday for facing the constantly new situations which autism represents in terms of ongoing training challenges.