Educating Children with Autism in Germany

[Ed. This is part of the international perspectives series]

Diagnosis
In Germany, autism awareness has increased considerably within the last two decades. Doctors know more about autism, so that a diagnosis tends to be made earlier and more frequently. Hence, much like all the Western world, we also experience an upsurge in diagnosis numbers.

Once a child is suspected to be on the spectrum, parents are referred to either a specialized center (for example a neurological pediatric clinic) or a physician in a private practice with a license for autism diagnosis (for example a child psychiatrist). Some cities also have "autism centers" which can run diagnostic tests. When a diagnosis is made, the center or doctor will discuss therapy options. In Germany, a relatively small number of children attends daycare under the age of three, therefore I do not know of any outside autism programs under that age. If the child is diagnosed earlier than three years of age, he or she will get Early Intervention at home, provided mostly by specialists coming to your house, offering traditional therapies like sensory integration, speech and occupational therapy.

Education and therapies
When children turn three years old, they usually attend nursery school, kindergarten and preschool. A child diagnosed with autism might be able to join a regular facility, if it has an integration focus. A lot of times however, regular facilities do not feel fit to accept autistic children due to a lack of experienced staff. For any such children, there are special ed facilities, which are specialized in therapeutic pedagogy and have specially educated staff. As education is run by the state and not federally administered, different states might have different policies. But generally speaking, autistic children are separated from neurotypical children very early on. This has been a matter of intensive discussion in the public for many years. These discussions have just increased after Germany signed and ratified the "UN Convention on the Rights of Persons with Disabilities." The convention states the goal of inclusion. Some feel that a separated education system violates this. However, others feel that the specialized care and protected areas provided in special schools are beneficial to certain children with autism, especially the ones severely affected. Special schools have smaller class sizes, more and specialized staff, lesser exposure to noise etc.

Entering school at six years of age, the process basically advances in the same way. There are special ed schools with different areas of expertise, like schools for children with physical disabilities, and/or learning disabilities, speech and language problems, as well as schools for the cognitively challenged. Autistic children should be distributed into the type of school that fits their needs best. A child with an Asperger's diagnosis might accordingly be mainstreamed in a regular school, getting additional care and assistance. A severely affected child might be sent to the school for cognitively challenged children. Since the spectrum is broad, one cannot generalize. However, the discussion here is the same as for preschool years: is it beneficial to have special schools or would it be better to send all children to one school? Opinions vary widely and as always, there is probably no answer that fits all.

In special ed schools, children will receive traditional therapies on-site: the buildings are usually equipped with separate therapy rooms, so that children have a class schedule on the one hand, and an individual schedule on the other hand. 2-4 times a year, all people involved (including parents) will meet in a "help conference" to work out and discuss the progress of the individual education plan.

All traditional therapies are covered fully by the health insurance without any co-payments. I should mention that we have universal health insurance in Germany, which employees receive through their employer, and unemployed receive it through the government, so that these benefits are equal for all people. Also, schools are state-run and free of cost except for a small fee for the lunch meals (which is paid for by the government if parents are unemployed). Next to traditional therapies, teachers and teacher's aides might implement specific autism interventions like PECS, TEACCH or ABA elements. But this is not always the case. It depends on the teacher's energy and willingness, as well as on the parents' involvement.

Severely affected children can get additional one-on-one aides, also at no cost to the parents. In special schools, classes usually consist of 6 children, 1 teacher, 1 teacher's aide and 1 intern; the ratio adult-child is therefore 2:1. Some children might need 1:1 care, in that case school and parents can apply for a one-on-one aide who can guide the child and use PECS or TEACCH or other specific autism interventions more effectively. Though not every child gets this aide approved. The school boards try to save costs and it usually depends on the parents' advocacy to push for an additional aide to be approved.

In Germany, children are off school quite a lot of times throughout the year: 7 weeks in the summer, 2 weeks in the fall, 2 weeks for Christmas and New Year, 1 week in the winter, 3 weeks for Easter. During these times, schools sometimes remain closed entirely and sometimes they offer a daycare service. Severely affected children might not tolerate the daycare very well – which in turn might cause a problem for the parents' work schedule. Again, individual solutions need to be found and arranged.

School is usually from 8 a.m. to 3 p.m. There are additional hours available from 3 p.m. to 6 p.m. But the staff ratio in the afternoon is not as good as during regular school hours and it makes for a very long day at school. Severely affected children sometimes cannot tolerate the long afternoon, they are challenged enough by attending class from 8-3. In that case, families can apply for services from another governmental program called "Individual case support." These services are being paid fully by the government, regardless of the family income, and a family might get anywhere between 6-20 hours additional care per week during afternoon hours at home. The caretakers are not always specialized in autism, but parents can search for specialized staff or they can train the caretakers themselves.

While there are elaborate structures starting with Early Intervention and moving all throughout the curriculum, one has to emphasize that it is still not always easy to find the right therapists or the right school. Parents have to put quite an effort into the child's best support, and extensive bureaucracy does not exactly help either.

I feel that schools could be improved as far as autism specific interventions are concerned. A lot of times, teachers are not familiar with PECS and TEACCH etc. There is a need in further education for teachers and teacher's aides. We have founded a parent organization in Berlin to promote and organize additional training concerning autism specific interventions.