September 1995 the HAK (Hilfe für das autistische
Kind) celebrated its 25th anniversary. It was established in
1970 by parents of children with autism as a self-help-group.
Its aim was to improve the education and training facilities
for their-handicapped children. Up to then there were neither
special schools nor training centres in Germany and the
parents had been left alone with their problems and they were
rather helpless. Thus courageous parents met and founded the
Federal Association to begin with. This cannot give help to autistic
persons directly but will serve as a coordinator, representative
and political moderator. During the following years many regional
branches were founded in many cities being able to give immediate
help. So parents became employers by founding training centres
and communities for people with autism. The centres are places
where autistic children receive special training and where parents
will meet for mutual talk about solving problems, finding solutions
and new ideas.
Today there is a network of 34 regional branches
and 21 therapeutic centres. In rural areas an ambulatory system
is offered: that means, the parents associations have hired professionals
to drive to the homes in order to train the children and to give
advice to parents in specific education and fostering environment.
The therapeutic centres are financed in accordance with the "Bundessozialhilfegesetz"
i.e. the federal legislation on social support. This provides
that wages paid and fixed costs such as house rents and other
duties will be refunded by the government. But to meet the other
manifold tasks the therapeutic centres depend on donations. Subsequently
the parents are admonished again and again to keep contact to
one another in order to push forward the task. And it is of some
importance for the self-help groups that the parents are befriended
among themselves. Families with autistic children are driven
into isolation very often, due to the complicated social behavior
of their children. So parents dare not to participate in normal
social life with their kids. In such cases it is good to find
persons with the same problems to support one another.
Certainly, a self-help group cannot substitute the
competent advice of medical experts and therapists. Each self-help
group has to regard itself as a necessary and reasonable supplement
to the therapeutic, medical and psycho-social treatment. The
intensive and voluntary study of their living situation by exchanging
the experiences of the affected is very hard, but it is worth
doing so. At the beginning the members of the group often learn
events of success when they realize that they have the same fate,
but shortly afterwards the depression follows. Then the support
must be: "Keep on going forward!"
The work in the group makes solving the problems
more easily, promotes self-confidence and increases personal strength
besides the exchange of important information. United it is more
possible to reach many aims in public, politics and with the administration
offices. The parents of autistic children are a strong mouthpiece
in public. There is a widespread tendency to call the state for
help, but "Nous sommes l'état" and we have to
act, although we have a right for help and we claim it. It's
great to sea the many honorary members working for handicapped
human beings. At a time of increasing social coldness, when it
is allowed to abort disabled unborns up to the beginning of labour-pains,
at a time when the costs of a disabled are calculated not being
able himself to contribute even a small part,- at this time we,
the parents, are challenged to observe carefully the political
occurrence and the spirit of the age, so it will not be the weakest
that hits the economic drive. A nation that discharges its weakest
citizens, acts immorally and it is exhausted in itself. All of
us will have to pay for the sharply increasing egoism.
In Germany much will be altered and economized in
the social field at the moment. But we, the parents, are still
facing severe tasks, for instance: the building of new homes and
working facilities for the autistic people. But to run good homes
for human beings with a high graded expenditure in treatment in
accordance to strong economic planning and in regard to using
the stopwatch when giving treatment to persons, creates a horror-scenario.
Profitmaking aspects in the field of social services may become
en explosive charge.
At present there is a strong trend towards integration
and selfdetermining life. This is desirable for the disabled
but it conceals the danger that the most handicapped will be pushed
aside. In this case the parents are called up again to represent
their protégés and to look after their future.
This works on its best in communities. So I predict an increasing
importance of self-help groups. The bigger they are the more
important will be their political influence.
Above all parents of handicapped children should
get engaged in politics much more. Who else could demonstrate
the needs and wants better? Frequently, ignorance of the public
is the root of misunderstanding and not wickedness because the
parents failed in informing about the needs of their autistic
children and to claim improvements.
As we, the parents, work on a honorary base with
spending a lot of our freetime in full engagement, we can demand
with a safe conscience the help granted by law and moral from
the state in the way of well-paid professionals and special
schools, working and living facilities.
Times roll by, the first parents-generation of autistic children will withdraw. Young parents are called to continue the approved work and to develop new ideas and to pick up new aims, so they can say one day: 'It was a life worth being lived.'