Title PAPE - Participation of autistic people in EU
Project Number 142667-LLP-1-2008-1-DE-LEONARDO-LMP
Product Final Report
Title Final Report
Product Type others
PAPE – Participation of Autistic People in Europe developed the AutismEPAT (Autism Europass Access Tool)
AutismEPAT is a tool which enables autistic people and especially those who speak very little or not at all (Autism in early childhood) to make a statement about their skills and competencies.
The AutismEPAT offers access to “europass cv“ and links further possibilities with its application:
1. It focuses on the user's skills and formulates goals.
2. It serves as a conversation guide and is built in a autism specific way, step by step approach. It can be completed by or with autistic people as well as about autistic people.
3. The presentation of one's own competencies in a solely positive way strengthens the user's self esteem.
4. If there is a move to a new institution or a change in staff, AutismEPAT can be used as a transfer instrument.
5. Families of the people concerned can contribute their knowledge and thus improve the general situation of their affected relatives.
6. Within society, AutismEPAT supports a new perspective on people with autism by a concrete description of their skills.
7. AutismEPAT can be used independently from special work methods and can be completed in a client-centered way.
Partners from different institutions were part of the development, all of which brought along long term experience from working with autistic people. All areas of the autistic people's lives were considered as a collection of positive statements.
Similar to the Europass, AutismEPAT encompasses the following chapters: work experience, leisure time and occupation, schooling and occupational training, languages as well as personal skills and competencies. They are divided into different subchapters and can be extended at any time by individual entries.
During the developmental period AutismEPAT was tested in two phases, it was evaluated and adjusted to day-to-day needs.
The experiences that all institutions had with the implementation so far were perceived as successful; working with AutismEPAT is well adopted by people with autism and it leads to a positive change on how the users are viewed. Furthermore, topics that have been unconsidered so far are taken up and show interesting, new persepectives.
Results of the evaluation and further information about the instrument and the partner institutions of the consortium can be looked up on the homepage. The computer program AutismEPAT including a detailed manual is available for download free of charge on the project's homepage. (www. project-pape.eu)
1. Project Objectives
Goal of the project was to develop a tool along the lines of „europass cv“ for people with autism and especially for those who speak very little or not at all. It is meant to enable them to present their skills and competences, encourage them to engage in self-reflection and active cooperation as well as to promote inclusion and to initiate personality development.
PAPE-Team set itself the goal to develop a tool that would allow an access to Europass. The Autism Europass Access Tool (short: AutismEPAT) is meant to allow a dynamic entry which can continually show the development in the person's life so that change can be documented in a self-reflective manner and so that continuity can be ensured. A manual describes the work philosophy and provides ideas and instructions for working with the tool.
During the developmental work the consortium was carried by their shared goal „collecting strenghts instead of describing difficulties and inabilities“ and the shared work philosophy „Focus on giving people quality of life rather than services“.
Like Europass, AutismEPAT consists of five areas. They are completed by the user from their first-person persepective. The areas are personal data, work experience, leisure and occupation, schooling and occupational training, languages, personal skills and competences. The descriptions are listed autism specific and on a step by step basis.
Goals which are related to the development of the tool:
To divert the view away from deficits towards skills for family and staff and thus offer the possibility to extend the spectrum for the autistic person.
A structured exchange is meant to be enabled over and above institutions.
To ask autistic people about their own assessment and to enable them to speak up for their own issues.
To capture positive skills that the person only shows rarely or not in an obvious way and which are familiar to only a small part of the staff. If there is a change in staff or a move to a different institution, this knowledge gets lost and it cannot be build upon any further. That's also why changes are often traumatic for the affected people and connected with long periods of settling in. AutismEPAT is meant to offer a ground breaking assistence here.
The big goal of PAPE Team, which is connected with the cooperation on the development of a new evidence of competence for people with autism, is a change in the perception of the affected people in society as a whole as well as in a transnational way. That's why the tool as well as the manual are available as a computer program free of charge for everyone who is interested.
2. Project Approach
PAPE Team agreed accordingly that there is no such thing as the method or this approach when it comes to working with autistic people. Besides training and advanced training of the staff, the view on autistic people with their skills and interests is above all decisive, in order to support them positively. The varying political situation, the status of socio-pedagogical work in the handicapped area – all these factors play an important role which are reflected in the level and qualification of staff as well as in appropriate facilities.
Through intensive discussions in which attitudes and approaches towards autistic people were shared, discussed and thought over, it was made possible that all five partners worked together equally on such a complex tool. It is an advantage that the members of the consortium share different as well as common experiences from this field of work. Some of them are parents of autistic people themselves. Furthermore, all members of the consortium are in leading positions and can therefore determine content and direction of their institution's work; and on the other hand they are working actively with autistic people and therefore possess long term and broad practical knowledge.
The consortium agreed to apply the tool in such a broad way that every institution can work with its own methods, in a transnational manner. Desired effects such as motivation for further training, an increase of self-esteem as well as the support of new offers for people with autism can be reached independently from fixed methods. AutismEPAT was designed as an access tool for the Europass. This can be used as it is by autistic people. In the sense of inclusion, this is a major step.
The underlying philosophy of AutismEPAT is appreciation: That's why all statements about skills and competences included therein are positive and formulated in a first-person perspective. This form of first-person perspective is meant to make assistants or reference people who use this tool with someone check the image they have about the competences of the autistic person.
According to our experience, people with autism make the best progress if their current skills are acknowledged and understood so that future goals can be clearly identified.
If he is able to, the user can decide for himself, which section of AutismEPAT he wants to work on and how he presents himself therein (for example through verbal communication or alternative forms of communication). The consortium wants to emphasise that AutismEPAT is not designed as a catalogue, whose statements need to be processed successively.. Rather, the underlying idea of AutismEPAT is to be used as a conversation guide and the particularities of the user are slipped in.
In order to simplify the application and make it accessible for all interested parties, the consortium decided to develop a simply usable software for this tool, which in addition to that, is accessible free of charge.
A process-oriented evaluation accompanies the project with regard to the achievement of goals (promotion of motivation, willingness for self-reflection and boost of self-esteem). The main emphasis of the evaluation with representation of all – was set with the leadpartner Germany. The other partner institutions were also included through a questionnaire in the second testing phase.
3. Project Outcomes & Results
During the 2,5 years of the project's progression, the tool AutismEPAT was developed, adapted into an easy to handle, computer based form and it was tested in all partner countries in two pilot stages. It is composed in English, German, Portuguese and Czech. Accompanying to that, a detailed manual was developed which conveys the project's philosophy and explains the application of the computer program. The manual is deposited in English, German, Portuguese and Czech too.
The tool is designed as a dynamic and flexible instrument for people with autism starting from about 16 years of age. At that age, first shifts often need to be managed, for example from school to a workshop/job, from living with the parents to a residence. All chapters and statements are collected in a main catalogue. These can be adapted individually for each client through an analysis, by choosing chapters, eliminating or adding statements. The wording is kept detailed and autism-specific.
It can be used by people with autism individually as well as with the help of parents or caretakers. With AutismEPAT competences are documented and assessed positively in daily life, those of which often times already mean a big challenge for people with autism. Educational contents are illustrated as well as the analysis of the statements which allows the preparation and planning of occupational tasks.
Working with AutismEPAT can serve as an impulse as well, to test further (educational) measures. The tool is a comprehensive instrument, but it is not necessary that it is completed quickly – some users might find the process tiring, while others enjoy it and therefore complete it faster. As the clients grow older and certain goals are achieved, the document needs to be updated on a regular basis. At the same time the user will lose certain skills when he or she grows older, which will be reflected in AutismEPAT. That is why the process of adaption of the tool is never fully completed.
Dialog and contact are always in the foreground. AutismEPAT can structure communication and serve to prepare a dialog contentwise. It is all about getting to know autistic people better and possibly getting to know them in a new way. PAPE Team works according to the philosophy to also give those people a voice who don't speak. The conditions of autistic people are meant to be improved with AutismEPAT and a contribution to their participation is meant to be made.
According to our experience, people with autism can best make progress, if their current skills are recognized and understood so that future goals can be clearly identified.
Best results from the work and the evaluation were the following:
• The observation was made that users enjoy working on it
• Views on the users change
• Behaviours were inquired which were usually simply perceived as disturbing
• Topics which had apparently not been relevant thus far were now considered as important
• A lot of suggestions for the development of new activities with the clients were gained
• During the development of AutismEPAT it was established that the training of the supporting staff is of special meaning. Staff that tries to use AutismEPAT without any training or instruction tends to rather use it as a questionnaire, without the dialog which is necessary to establish a connection to the client. Staff, on the other hand, who has received an instruction into the application of the tool uses it in the intended way; to encourage a conversation with the client, in order to understand their needs and wishes better.
• It is helpful to experiment with AutismEPAT. For different people (family members, legal representatives and staff) who know the user well it could be helpful to apply AutismEPAT together with him/her. Based on the type of relationship between the user and these different people, different statements can be made, as the user might prefer to make certain statements in the presence of a certain person. It's an advantage for the user as well as for the other people that this process occurs, as additional information can lead to a better understanding of the person and his/her needs, while other people might reconsider their attitude about the skills and goals of the client.
A download of AutismEPAT including a detailed manual is available free of charge at www.project-pape.eu
The partners of Team PAPE came from Ireland, the United Kinkdom, the Czech Republic, Portugal and Germany. The advantage of developing this project in a transnational way rested with the idea of not only seeing one's own possibilities and boundaries, but to also collect impressions and suggestions which go beyond working with AutismEPAT.
The work fields of the cooperation partners were very versatile, day care facilities and/or residential facilities, institutions that originated from affected parents and the university research. All representatives of the project partners contributed long term experiences from different areas of life of autistic people. Some of them also from their private environment, as they are parents of autistic adults.
The mutual visits deepened the understanding about the current political conditions as well as the practical work on-site. In the encounter at the working level in Europe it was exciting to see that a highly qualified and innovative exchange was possible despite initial language barriers.
The underlying philosophy of the common work and therefore also of AutismEPAT is the appreciation of the people and the assumption that lifelong learning and development of skills is also possible for people with autism. There are different perspectives in the different institutions, however everyone related to a similar basic attitude towards the support of people with autism. Coming as close to the needs of the people in need as possible was always in the centre of the cooperation.
Especially in the work with people with autism (especially people with autism in early childhood) it is often realized that guidelines and methods which are laid out for the work with people with handicaps, are often not adequate. That is why new and more appropriate ways are being looked for in a lot of areas like occupational education, adult education, social training and integration. The view across boarders opened up new ideas and approaches as every country has different political systems, attitudes and according to this, different approaches.
The extension of further associative partner institutions in every country during the second testing phase brought another view from the outside. Since those partners had not been included in the development of the instrument, helpful experiences were gained and the tool could undergo another test.
Working in a partnership with people from different European countries with different languages promoted the extension of technical and political insights, as well as the linguistic competences of the non native speakers.
5. Plans for the Future
In the partner institutions of PAPE it was worked with adult autistic people, who do not speak or only speak a little and often times show challenging behaviour. With this group of people progress can only be observed in bigger lapses of time. That is why during the testing phase only tendencies could be determined, which however point to further positive developments.
AutismEPAT was convincing in the institutions in which experiences were collected with it and it established its firm place. A further distribution is being pursued through different steps. In October of 2011, the leadpartner introduces AutismEPAT at the Union Convention of Autism Germany.
PAPE Team plans a further joint project in which AutismEPAT and its distribution plays an important role. Countless positive feedback and requests, among other things also due to the tools introduction at Europe Day of the Werkstätten Messe in Nuremberg in March of 2011 give rise to the development of workshops which are more in depth. Also the wish was expressed repeatedly, to make the tool available to people with other handicaps, as well as an adaption for people with Asperger syndrome.
6. Contribution to EU-policies
Through the possibility to present their skills and competences, the participation in social life is extended for people with autism, existing discriminations are diminished and integration in terms of (occupational) education and further education is supported.
AutismEPAT supports person-oriented statements and thus increases quality of life. The tool enables the user to experience self-determination, options and self-intercession through their own statements. This way it supports dignity, possibilities and inclusion. Moreover, the tool emphasises the preservation of rights and the support of people with intellectual interferences, as people regardless of their intellectual interferences or health issues practice their civil and human rights. With AutismEPAT institutions can support people with autism/users to learn these rights. The tool preserves dignity and respect by treating the clients first of all like human beings. Their competences and strengths are emphasised and areas for further development are determined, instead of looking at them as weaknesses. AutismEPAT strives to affirm natural support networks.
Due to their limited communication competence, people with autism have limited opportunities to take part in the basic right for general and occupational education.
With AutismEPAT they are given the possibility to present their skills and competences and through that gain a better access to education. Formal as well as non-formal competences are not getting lost during shifts between institutions and workplaces and it can be build upon them. AutismEPAT increases the level of competence of risk-groups. Autistic people can now gain appreciation which had not been available this far. Beyond that, it is a tool for the support of lifelong learning motivation, interpersonal, social and civil learning competences are named and serve as an incentive.
The possibility to present yourself in a positive way through AutismEPAT leads to a bigger acknowledgement of skills, especially for people that speak very little or not at all and establishes a compensation when it comes to equal opportunities and justice. Especially since there is no such thing as an overlapping and adjusted documentation of skills and acknowledgement of their qualifications for people with autism.
Institutions received further suggestions from the tool to offer educational measures. The sense of belonging is meant to be increased by the tool's application, as the users are supported to maintain current bonds and make new friends. Working with AutismEPAT supports and focuses on the exchange of shared interests in working with autistic people in different institutions as well as beyond country borders.
AutismEPAT - a free software
to show skills and competences
Area of application