What has Autism Speaks achieved

World Autism Day April 2, 2014

March 25, 2014 Petra Steinborn

International World Autism Day on April 2nd was launched in 2007 by the UN. The aim is to increase public awareness and knowledge of autism and to encourage more understanding for those affected. Autism is a syndrome, not a disease. Autism is a pervasive developmental disorder that is innate. The spectrum of autism is very large and very different in individual cases; the severity of the symptoms can vary greatly.

Numerous campaigns take place around the world. The non-profit organization Autism Speaks, which deals with the research and causes of autism, calls for the lightitupblue campaign every year. All over the world people should be encouraged to make a mark of light, for example, by shining buildings in blue light (blue is the international color of autism) like the Empire State Building. In Hamburg, those affected and their relatives raised hundreds of blue balloons under the motto “Blue sky over Hamburg”, representing each child diagnosed.

Autism speaks means something like "Autism speaks". The organization underlines with its name that it wants to unite the autism community into one strong voice. At the same time, care should be taken to ensure that people are listened to.

In 2013, on World Autism Day, those affected and their families started a protest against the use of the word “autism” in connection with politics, the economy and rampage. For this purpose, photos with striking positive statements were published in order to counter the one-sided descriptions of autistic people in the media. In connection with the rampage, autistic people were assumed to have characteristics such as ruthlessness, egocentricity, unreality and lack of empathy.

This protest was triggered by media coverage of the gunman at an American school in Connecticut. At that time, the suspicion was expressed that the gunman was Asperger's autist. The German Autism Association condemned this reporting in the strongest possible terms, as this presentation of individual media about the terrible rampage in Newtown gave the impression of a causal connection. All people with autism in Germany and their relatives and friends felt discredited by such reporting.

From my point of view, a critical discussion about the fact that the support of people with autism in Germany is too much in the medical and psychological hands is overdue. It appears that therapies are a panacea. What is critical about this development is that therapies are very important and the focus on auxiliary measures in everyday life is neglected. Therapy takes place in framework conditions that are difficult to transfer to everyday life. Successful pedagogical concepts work on the principle of “place first, then train”. It is more effective to practice skills in real conditions than in artificial situations. My aim is not to pillory therapeutic aids, but I would like to draw your attention to the fact that not all problems have to be immediately classified as requiring treatment.

Autism is a syndrome, not a disease. It's not about healing through therapy, but about learning skills and strategies. This applies to those affected themselves, but also to the environment. All those involved should see it as a joint task to create conditions that are beneficial, that minimize weaknesses and use strengths. Although the Convention on the Rights of Persons with Disabilities introduced a paradigm shift in which the medical-psychiatric deficit-oriented model was replaced by a socio-educational logic that focuses on strengths and skills, the time does not seem to be ripe in Germany. It is noticeable that the call for therapeutic support is unbroken, with the result that children get the feeling very early that they have a deficit and that they need treatment.

Recently, the FAZ.net read of the outrage of the pediatrician Michael Hausch that too many children are being treated. Life without therapy is no longer the norm, but is becoming more and more the exception. Therapies seem to give parents and teachers a sense of security. The consequence of this therapeutic actionism is that responsibility is transferred to other hands. Hausch calls on parents, primary school teachers and paediatricians to provide individual and attentive support to children in their development, to remove obstacles to development, to strengthen them and to awaken resources.

Autism is a standard variant of human being (Attwood). People with autism are experts in their own right and need to be taken seriously. In Germany, unlike just a few years ago, more and more relatives and affected persons are speaking out because they did not see research efforts as a reflection of their interests due to the lack of cooperation between adults from the autism spectrum and research, which often led to a negative attitude .

The Autism Research Cooperation (AFK), an association of autistic people and scientists, was founded at the Free University of Berlin in 2007. For the first time, questions that are relevant from the perspective of autistic people are being researched together. The first AFK project was to examine the knowledge and prejudices about autism in different population groups with the help of a specially developed questionnaire. The result was that professionals such as teachers, recruitment agencies or doctors, but also the general population, know little about autism. It has been shown that knowledge of symptoms leads to a higher acceptance of the specifics of autistic people. For this reason, AFK has started to develop flyers that can be downloaded free of charge.

It is to be welcomed that the number of self-help groups is increasing. Affected and relatives exchange ideas in social networks and support one another. It is a relief to know that you are not alone with your questions and problems, but that others feel the same way. The worldwide campaigns for World Autism Day bring people together - community makes you strong!

For more information on autism, please refer to the Autism Keyword Reviews List.

Petra Steinborn
ABC Competence Autism, ABC Competence Acquired Brain Damage
[email protected], www.abc-autismus.de