On the Need For Advocacy in Germany

This and another post today continue our series of writing by international guest bloggers. Monica previously wrote about educating children with autism in Germany and adulthood and more.

Having a child with autism is not and should not be about finances. Knowing that my son's special needs are fully taken care of financially by the health insurance and the government is a great relief to me. Since I don't have to spend money on any autism-related services, I feel I can concentrate on my son's development and well-being, and on the quality of our family life. We are currently doing very well, but I should mention that we only got there by strong advocacy.

Even if there are a lot of services and benefits, it does not mean that one gets them automatically. Government officials, the heads of school boards and health insurance employees naturally try to save as much as they can. As a parent, I have to investigate my rights and see to it that they get fulfilled. This is not easy for just any parent. Some people find it difficult to educate themselves, to stand up against officials with big job titles etc. This is another reason why we have founded our parent organization in Berlin: next to raising awareness, fostering advocacy, and training teachers and caretakers, we also want to help families who do not receive proper services, just because they do not know how to get them. One example: my son benefits immensely from his one-on-one aide in school, but in his class is another girl with autism who does not have a one-on-one aide. Her parents are from Africa and do not speak German.

Another example: my son is being treated by a child psychiatrist with a very good reputation. He has many patients with autism and is very experienced. When we first went to see him, my son had already been disgnosed with autism several years prior. We entered his office and twenty minutes into our visit, he turned to me and said: "Well, I don't even think I need to see your son's diagnostic paperwork anymore. This must be the most obvious, clear-cut case of autism I have seen. Right out of the book." Yet, when my son's school placement was evaluated, the school board tried to code him "cognitively challenged" rather than under the "autism" code. Autism qualifies for more benefits, and the board was trying to save. I had to fight to get the autism code – and I know a few parents who did not win that fight, even though their child has a proper diagnosis.

(Incidentally, this is one of the reasons why the question of autism prevalence is a murky and messy issue in Germany. Studies which go by school codes really aren't representative. So while everyone knows that more children are being diagnosed – mainly due to better knowledge of doctors and a broader spectrum understanding – we do not have any reliable official numbers.)
Up until my son was two years old, we lived in the U.S. and we experienced a great amount of compassion by other people. Here in Germany, people in public seem to be colder. Admittedly, this could also be due to my son's growing: he simply isn't the odd-but-cute little toddler anymore. But I feel in general that society is more tolerant and accepting in the U.S.

Is it a coincidence that the U.S. is lesser known for its social security system, but more so as a nicer society? Maybe people are more compassionate in the U.S. because they know that families with an autistic child face a lot of difficulties and have to manage these difficulties in a self-reliant way. In Germany, on the contrary, everyone knows that families with an autistic child get extensive services, receive a lot of benefits, and that their children go to schools which cost the taxpayer dearly. I think this allows people to cultivate a detached mentality, as in: "They get all they need, they are well taken care of, so why should I get involved. It's none of my business, my duty is fulfilled by the taxes I pay." The segregrating effect of children with disabilities mostly attending special schools and adults mostly living and working in special facilities might contribute to the distance, which the so-called normal people feel (and like to keep for their own comfort).