On the occasion of World Autism Awareness Day, the Social Equity Working Group of AEGEE Europe interviewed a kinesiologist (K) at Center for Autism, Zagreb, Croatia and a speech therapist (ST) at Special hospital for the protection of children with neurodevelopmental and motor disabilities, Croatia to learn more about the disability.
If you need to define Autism as a disorder, how would you simply describe it?
K: Autism is a developmental disorder, which means a disorder that occurs at a certain period in the child’s development, often slowing down normal development.
ST: Autism would be characterized as a permanent disorder of primarily social communication and interaction.
What is important, in your opinion, for people to know about young people with Autism/Autism Spectrum Disorder (ASD)?
K: It is important for people to understand that people with autism understand the world around them differently and react that way. they are irrelevant to them and vice versa. They are not crazy or stupid they just have a different value system and priority.
ST: It is important to know that these are young people who have all the needs, requirements and desires as well as their peers, they just cannot express them in an adequate and usual way.
Do you think that people should be more aware of this disorder, which is also considered a neurological disability? If so, how and in which (professional, personal, social) areas?
K: Yes, it is absolutely necessary to include them with additional support in various areas, from education, local community, clubs to assisted employment. I would introduce compulsory volunteering for students.
ST: Certainly, the public should be made more aware of young people with autism in order to know how to properly approach them and to understand their needs.
Do you think young people tell their condition to people in their community? Do they talk openly about that topic?
K: Many do not know and cannot self-advocate. Their social life is mostly reduced to associations and socializing within the disorder. There is definitely a need for better education for all individuals in society with whom they come into contact: teachers in regular schools, doctors, coaches…
ST: Absolutely that autism as a permanent disorder affects their position in society and they do not tell anyone about it, partly because they do not know how to express themselves, and partly because they do not expect to be understood.
Do you feel that young people feel supported and understood in their community given their condition?
K: No, misunderstood and often segregated because of their “strange” behaviour. Unfortunately, deprived of basic rights such as treatment, education…
ST: I think they are poorly supported and understood in their community, but certainly better than 10, 20 years ago.
How does this disorder affect their lives and daily activities – what challenges do young people face?
K: They are mainly focused on families, associations (NGO working with them) and the school they attend.They are excluded from all general social activities.
ST: Strongly affects their lives because they find it difficult to function in daily activities, not to mention permanent work.
Has the pandemic (and lockdown) affected and still affect their lives? If so, in what way?
K: Of course, as people with autism desperately need a daily routine to function well, many people are in regress due to the lack of activity they normally carry out which in a lockdown this was not possible.
ST: This covid situation has made their condition worse – they are more isolated than ever and their ability to go to therapies that help them function better in everyday situations has been reduced.
Do you believe that they are integrated into the school / work environment? Do you think they face any kind of discrimination based on their condition (in public places, at school / university, in the workplace)? If yes, please share how.
K: Yes, many are discriminated against due to lack of knowledge by the general population, because a lack of understanding of the disorder causes discomfort in people. Schools cannot cope with the difficulties of students, employers with special requirements of employees, coaches do not know how to include athletes… It turns out that it is easier for everyone to exclude this population.
ST: Recently, they have become more integrated into the school system, but still face discrimination in public places due to insufficient information of the population.
Do you think that the government of your country, or the country in which you currently live, has a good response and strategy for the inclusion and integration of people with neurological disability? Why yes/no?
K: Yes, the laws are well written but in practice they are often impossible to enforce.
ST: Our government does not have a good enough strategy. Let’s hope it works on it.
What are your hopes, fears, or expectations for the future?
K: I still hope that the future will be better for our “special” fellow citizens.
ST: My fears are hopefully unjustified!