After the diagnosis

In the following, we refer to late-diagnosed individuals, i.e., autistic individuals diagnosed after age 16

I received my diagnosis – what now?

For many late-diagnosed autistic people, the diagnosis comes as a surprise:
Some didn’t know anything was different at all and may have been receiving treatment for co-occurring disorders, such as depression, when they received their autism diagnosis.
Others have been searching for an answer for many years, may have done their own research, targeted the diagnosis, and have finally learned they are autistic.

When diagnosed as a child, individual needs can be identified and addressed early on; however, as an adult, one has already lived a long time without this consideration, both from the environment and from oneself.
Especially the adjustment to “being normal” requires a lot of energy, and what looks playfully easy for neurotypical people without autism can be a daily struggle for autistic people.

So the diagnosis initially brings clarity and certainty.

But is that already the end of this long journey?

Will it change my life?

First of all – not necessarily.

Autism is considered a “mental disability” under the Social Security Act.
At first, this may sound strange, inappropriate, even negative, but in the end it only means that the legislation takes us into consideration. How appropriate the term is remains to be seen.
Some autistic people have severe limitations in everyday life, others lead such an adapted life that the autism is hardly noticeable. Autism spectrum disorder manifests itself differently in everyone.
Therefore, it may well be that nothing needs to change at all, but that one simply has an answer to a long-standing question.

Classification as a disability has the advantage, in the case of present limitations, of laws for the protection and inclusion of autistic people.

For example:

  • Social Security Act SGB IX for the rehabilitation and participation of people with disabilities.
  • Disability Equality Act BGG for the public sector (e.g. accessibility)
  • General Equal Treatment Act AGG in civil law
  • UN Convention on the Rights of Persons with Disabilities
  • Chapter Six of the Social Assistance Act SBG XII on legal rights to integration assistance
  • Federal Participation Act
  • Other laws that will come into force in the coming years

For example, these laws state the following:

  • Autistic people are allowed to attend normal schools
  • Access to vocational training centers as an alternative to classic dual training programs
  • Cost coverage of therapies, if necessary also diagnostic costs
  • Compensation for disadvantages, e.g. during exams, special parking spaces, exemption from vehicle tax, etc.
  • Entitlement to a disability card in the case of corresponding restrictions
  • Integration measures

More information (German):
https://www.autismus.de/fileadmin/user_upload/Broschuere_Rechte_von_Menschen_mit_Autismus_Stand_13Nov.pdf
https://www.autismus.de/recht-und-gesellschaft/rechtsratgeber-merkblaetter.html

This means that people with autism are allowed to attend all forms of school, to complete education and to pursue professions, just like everyone else.
In addition, they receive special support according to their needs and are eligible for a place in therapy.

What support do I need?

The real question is how to find out what you need.
Autism is very often accompanied by conditions such as depression, obsessive-compulsive disorder, etc. So the first thing is to find out what exactly comes from what. During the diagnosis, a differential diagnosis is already made; that is, everything is looked at in detail to see if it comes from autism or from something else.

Many diseases are similar to autism in their symptoms, which makes the diagnosis more difficult.
For this reason, a distinction is made, so that afterwards one can assess what has what cause. If the diagnostician has not done this, this would be the next step. Here it is advantageous to look for therapists and psychiatrists who are familiar with autism.

The next step is to find out exactly what is needed. Possible ways would be:

  • Contact with other autistic people, e.g. in groups (online or in person).
  • We offer a Facebook group and, as part of that, local regulars’ tables.
  • Some large cities already offer their own local regulars’ table meetings.
  • Open conversations with neurotypical confidants, i.e. people without autism
  • Counseling centers

Depending on what support is needed, other authorities are responsible.
For this purpose, it is advisable to create a checklist of what you can apply for and where, so that you can gradually work through what you have done.