For the first time, a dialogue session was held between members of the UN Committee on the Rights of Persons with Disabilities and autistic advocates on the side lines of the Committee’s 21st Session. It was organised by Autism-Europe – with the support of the Government of Malta – on the eve of World Autism Awareness Day in the United Nations (UN) in Geneva. It addressed some of the key challenges faced by autistic people and ways of improving the implementation of UN Convention on the Rights of Persons with Disabilities (UN CRPD).
All speakers on the panel were people on the autism spectrum, from Malta, France, Finland and Switzerland. The discussion was chaired by Dr Alistair de Gaetano, Chairperson of the Maltese Autism Advisory Council. He highlighted the importance of neurodiversity as a concept entering the mainstream, rather than remaining a fringe issue. He gave practical examples to show how autism policy and practice should be aligned, particularly within the context of the UN CRPD.
Access to education
Nigel Borg, a self-advocate from Malta, presented his experiences and difficulties within the education system. He suggested how it could be adjusted in order to ensure appropriate participation of autistic people, by focusing on both pedagogy and infrastructure. It would render education accessible for all students across the board. The importance of providing support at all levels of education, and the need for adequate training in autism for various professionals were pointed out. His intervention roused interest from members of the UN CRPD Committee, who asked for further information to ensure optimal access to mainstream education.
Access to employment
Stéf Bonnot-Briey, a French member of Autism-Europe’s council of administration, spoke of the need for autistic persons to access the world of employment on an equal basis with others. She emphasised that it was not only about upholding a fundamental right but was also instrumental in upholding their sense of self-worth and dignity. She reminded the audience that the lack of legal capacity also often prevents them from freely accessing the labour market. She stressed that the specific needs of persons on the autism spectrum have to be addressed through the provision of reasonable accommodation, the nature of which may vary greatly from one person to the next. She concluded by emphasizing the diversity of autistic people and thereby of the means necessary to support them in the community according to their individual needs.
Access to services throughout the lifespan
Heta Pukki, the chair of the board of ASY – Autistic Spectrum Finland, shared her experience of connecting with autistic people from many countries and finding that lack of access to services was a common theme. She reported that before being considered eligible for benefits and services, she was confronted with many hurdles during the administrative process, due a lack of knowledge and understanding about autism and support needs. Throughout the lifespan, accessibility of services is a paramount right and is necessary to improve the quality of life of autistic persons. She highlighted that the few studies that exist regarding the situation of autistic people paint a very bleak picture, even though they are conducted in the most advanced countries. Autistic people still tend to die much earlier, due to suicide and preventable diseases, because of discrimination in accessing healthcare services.
She called for the monitoring of timely access to quality services and its impact on the lives of autistic people and their families/ supporters as well as its economic added value. She emphasised the importance to not focus on research and funding vis-à-vis autism’s causes, while neglecting funding and sustainable provision of effective services that would save lives. She highlighted a number of international best practices for supporting autistic people and called for their participation, including in research design.
Finally, Olivier Zimmerman, a Swiss advocate attached to Autisme-Genève, spoke of the challenges autistic persons face within the Swiss state and the importance of not merely focusing on awareness through lighting up landmarks, but in ensuring that society has a proper awareness and understanding of autism. It would ensure that autistic persons are not neglected and that their needs are better met. More understanding of autism would mean that they are not undermined when attempting to exercise their equal human rights, including the rights outlined in the UN CRPD.
Committee members asked how to follow-up on the points raised and raised specific questions, notably concerning autistic persons living in group homes and about inclusive education.
During the session, Malta’s Deputy Permanent Representative to the UN Organisations in Geneva, H.E. David Cassar, outlined the Maltese Government’s continued commitment to disabilities and autism, at both the national and supranational levels, while giving specific details about the work of the Autism Advisory Council.