Autism – Asperger Hellas is a non-governmental organization in Greece dedicated to contributing to the improvement of autistic people’s living standards and to ensuring that they have a decent life which enables them to explore their full potential. Our mission is:

• to raise public awareness of autistic spectrum disorders to help autistic people enjoy a full, creative and autonomous life within the wider social framework,
• To fight discrimination and the social stigma associated with autism, thus ensuring that autistic people be given equal chances for social incorporation,
• To promote the idea that autistic people deserve the same basic social rights as those considered normal,
• To work on the sharing of specialized scientific knowledge in the field of Pervasive Developmental Disorders, and
• To cooperate with other organizations which share the same vision.

Our two main projects at present are the launching of our updated Autism-Asperger Hellas website with very encouraging results and providing support to the Special Day Care Unit of the Attica Psychiatric Hospital for Children, a leading structure in the area of early intervention in Greece.

We have also launched AUTISMPRAXIS website, the first ever social networking community for autistic people, families and autism professionals in Greece. AUTISMPRAXIS currently has more than 300 members. More is planned for the near future.

Our organization has a membership of parents of affected children and prominent scientists in the field. Our scientific advisor is Dr. Stergios Notas, Head of the Day Care Unit, a leading authority on autism in Greece.

Prevalence of Autism in Greece

We know that in the UK, 1 in 110 children is diagnosed with autism, and in the US the number is 1 in 150. Autism prevalence is an issue that requires further study here in Greece, as no studies have been conducted using globally standardized methods and diagnostic tools. There is a core group of dedicated Greek researchers who have been studying autism for years, and they are actively seeking funding to determine the prevalence of autism in Greece. Again, Dr. Notas could be more enlightening on the subject.

General Public Awareness

Although Greece is proud of a culture that is based on tolerance and acceptance and despite the fact that social networks (in the limited sense of families as well as in the extended one of the community) are functioning as a safety net, autism has emerged as a social issue only during the last few years thanks to the efforts of a handful of scientists and parents. This has been due in part to lack of state funding for research and proper supportive structures within the educational and health system, delayed diagnosis, lack of training programmes for teachers and parents, lack of a unified and structured awareness campaign, and a reluctance of several parents to accept the condition of their children and step forward. Experience has shown that local communities can be accepting and supportive as long as they have proper “coaching.” This is where efforts like ours come in.

Challenges for Autistic People

Social integration is a life struggle for people with autism in Greece as elsewhere. Ensuring that autistic children are treated differentially according to their functioning level is also problematic. Educational integration remains as a pressing problem as long as the system operates in a rigid, insensitive manner. Thus, it is difficult for an autistic child to achieve his or her full potential and it often requires extra effort and money if accomplished. Adults with autism also face a range of problems, based on the severity of their situations, from finding suitable employment to securing a place where autonomous, semi-autonomous or supported living is provided for them. There are many stories (I fear too many) that exemplify these quick points, including the story of my 10 year-old-son who is struggling to attend mainstream school and of many other boys and girls enduring their everyday battles.

Breakthroughs

One could say that progress has been made in the following fields:

Raising awareness: Autism is an issue now discussed publicly, covered (although not as much as the autistic community would like) by the media and addressed as such by the educational community.

Legislation: A number of legislative acts have been passed (although with dubious results) concerning the rights of the autistic people.

Research: A very active scientific community (inadequately funded) is trying to develop tools for diagnosis and intervention.

The Autistic Community

The autistic community is a vibrant one. It possesses the will and the potential to make itself heard and can contribute its own unique voice and perspective. We feel that now is the time to become part of a broader picture. That is why we feel that such contacts and cooperation can only benefit people with autism in Greece.

Sofia Sagia
Autism –Αsperger Hellas
2010

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The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.