AUTISM-POLAND Association was founded in February 1998 when after a number of prior arrangements 21 non-governmental organizations adopted the policy declaration of the Association of Non-governmental Organizations for Children and Adults with Autism and Related Disorders and for their Families. Most of the organizations were founded by parents of individuals with ASD, some of them also in cooperation with specialists.
The Association started its operations as a voluntary and unincorporated union of organizations cooperating as equal legal entities, acting for the benefit of autistic children and adults and their families. Representatives of the organizations included in the AUTISM-POLAND Association were to meet at least twice a year as well as exchange documents and share information in the form of correspondence. They established Regulations that determined major principles of operation.
he members of AUTISM-POLAND Association have been organizations from all over Poland. The Association has been cooperating with many other entities than members of the association, such as research institutes and medical institutes, universities, treatment and therapy specialists as well as ASD educators.
In 2019 AUTISM-POLAND Association decided to obtain legal personality and officially register in the National Court Register as a union of associations. The AUTISM-POLAND ASSOCIATION unites 34 organizations as ordinary members. Most of member organizations are support and service providers for children and adults, running kindergartens, schools, clinical diagnosis and therapy centers, as well as in the field of social activation and occupational development. AUTISM-POLAND as a federation does not provide direct support to individuals or families. The charter of AUTISM-POLAND allows including contributing members too. These can be natural persons or legal persons or other organizational units, such as research institutes which offer technical, material or financial support. For over 20 years the Association has been led by SYNAPSIS Foundation, a member of Autism-Europe. Since 2022 the secretariat of AUTISM-POLAND has been supervised by the Autistic People Support Association located in Gdansk.
The mission of AUTISM-POLAND ASSOCIATION is to do the following:
- improve life quality of individuals with ASD,
- act and contribute to implementing the UN Disabled Persons’ Rights Convention in Poland,
- develop non-governmental organizations which act for the benefit of children and adults with ASD and their families, mutually support and exchange experiences,
- consolidate groups which act for the benefit of autistic persons,
- form representatives of associated organizations before public authorities,
- promote knowledge and awareness of autism spectrum disorders, including actions for the benefit of social inclusion of these persons in all fields of life,
- monitor execution of rights of children and adults with ASD and their families, as well as check how their needs are met, and prevent discrimination against these groups,
- advocacy activities for the interests of autism community, including cooperation with ASD self-advocates.
The most superior body of AUTISM-POLAND ASSOCIATION is the General Meeting. AUTISM-POLAND nominates a collective Board (7 persons – incl. 5 parents and 2 professionals-community workers) and collective supervision and control body. The Board and supervision body are appointed for a four-year term and work for free. The General Meeting may take a decision to form AUTISM-POLAND Association’s Programming Council. Members of the ASSOCIATION may appoint Working Groups from among themselves.
AUTISM-POLAND ASSOCIATION is Poland’s only association which unites various non-governmental organizations with legal personality, acting for the benefit of autistic persons and their families.
II. Actions for the benefit of the group – standards and good practices
One of the main goals of AUTISM-POLAND is to build a platform for organizations acting for the benefit of autistic persons in order to let them exchange experiences, develop common standards, share knowledge and good practices. It is possible because AUTISM-POLAND gathers organizations in which recognized physicians, therapists and teachers operate, considered as local and nationwide authorities in the field of autism.
For over 20 years plenary meetings of AUTISM-POLAND have taken place usually twice a year. Every year at least one and in some cases few nationwide conferences are held by particular member organizations under the auspices of AUTISM-POLAND. Attended by numerous domestic and foreign authorities, these conferences have contributed to popularization of knowledge of widely understood education and therapy of autistic persons among ASD families and professionals in all disciplines.
Thanks to cooperation in running the Early Detection of ASD Program entitled “Badabada” since 2013, the age for diagnosing toddlers and young children in Poland has dropped considerably.
In 2006 AUTISM-POLAND Association’s position on ethical aspects of therapy of autistic persons was elaborated and adopted. In the ASSOCIATION there have been constant exchange of knowledge, experiences and good practices.
Member organizations cooperate very actively, like in years 2013-2014 seven partner organizations – members of AUTISM-POLAND – completed a comprehensive two-year-program „From Exclusion to Integration – protecting the fundamental rights of persons with autism” under the Fund for Non-Governmental Organizations of the Swiss-Polish Cooperation Programme Block Grant.
AUTISM-POLAND introduced the campaign entitled „Light it up blue for autism” on 2nd of April – World Autism Awareness Day in Poland. This campaign has been conducted successfully with so much effort and engagement so that many other organizations – also not associated, institutions and even companies have been joining it every year.
In recent months, in view of COVID pandemic, AUTISM-POLAND has been organizing the cycle of online webinars for parents/members of associated organizations.
III. Actions on behalf of the ASD community – advocacy
For over 20 years AUTISM-POLAND ASSOCIATION has been representing the all-Polish group acting for the benefit of individuals an the ASD. At this time it has been systematically cooperating with the parliament, several ministries, in particular health ministers, education ministers, social security ministers and EFS funds program ministers.
Additionally AUTISM-POLAND ASSOCIATION has been closely cooperating with other national bodies responsible for disabled persons issues, including Commissioners for Civil Rights Protection, Government Plenipotentiaries for Disabled People.
A special form of cooperation with Polish parliament is an All Party Parliamentary Group on Autism, appointed by Members of Parliament and Senators on 6 December 2001, initiated by AUTISM-POLAND and leading SYNAPSIS Foundation. Since 2001 the Parliamentary Group on Autism has been operating throughout all terms of the parliament. Thanks to close cooperation of the Parliamentary Group on Autism with AUTISM-POLAND Association, a series of actions were taken; for example in 2013 Polish Sejm adopted the Charter of Rights of Persons with Autism, elaborated previously by Autism-Europe, and following numerous parliamentary questions, parliamentary initiatives and consideration of justified interests of autistic persons and their families in adopted acts. The conferences and debates in Sejm were attended among others by Donata Vivanti and Pierre Trehen from Autism-Europe Board to support AUTISM-POLAND ASSOCIATION’s advocacy-related operations in Poland.
On behalf of AUTISM-POLAND, hundreds of draft legal acts were supervised and consulted. These actions proved to be highly effective. Upon initiative of the AUTISM-POLAND ASSOCIATION, a number of changes were introduced into regulations or unfavorable modifications were prevented.
Thanks to efforts put by AUTISM-POLAND, a separate code for pervasive developmental disorders was introduced into the disability adjudication system in Poland, starting from 1 January 2010, as a result of which a group of ASD persons was defined and can make use of a series of forms of support services intended for persons with special needs (previously autistic persons were considered as persons with intellectual disability or mentally sick persons).
AUTISM-POLAND Association played a key role in attempts to adopt regulations which aim was to dedicate over 10-times higher public means for education of a student with ASD, when compared to a neurotypical student.
AUTISM-POLAND Association has taken a number of steps and initiatives with a view to improving situation of persons with autism. Representatives of the ASSOCIATION participated in many conferences and debates, and were included in important working groups formed by various government bodies, with regard to the following areas:
- health protection system (2005-2006),
- Rehabilitation and Employment Act (2009),
- changing policy for persons with disabilities (2013-2014).
Sadly in recent years efficiency of advocacy-related actions have substantially decreased, but this only motivates AUTISM-POLAND Association to try harder. Representatives of AUTISM-POLAND ASSOCIATION Board constantly keep in touch and meet by electronic means with the current Government Plenipotentiary for Disabled People and elaborate new strategies, solutions, especially with regard to support services for adults with ASD because this area is highly neglected in Poland. In the next t4wo years a number of reforms will be adopted and introduced, for example deinstitutionalization, introduction of detailed regulations related to adoption of EAA (European Accessibility Act).
The AUTISM-POLAND ASSOCIATION faces a number of challenges both in regard to consolidation of the community in Poland and actions for the implementation of rights of persons with ASD.