Autism in Britain and Germany

Hello, I'm pleased you have posted your message

I'm interested to know of autism groups and activities in Germany too 

Hello Anna, thank you for your 
detailed answer.
For me, there were three things in 
particular that prompted me to get 
to the bottom of the matter. First 
when I met my best friend who is 
also on the spectrum, then a 
documentary on television and 
finally the fact that an autistic 
person asked me to what extent I 
was on the spectrum. I was also 
downright shocked at how little 
psychologists and psychiatrists 
know about autism. For example, one
 professional said that while she 
didn't know about autism, she didn't
 think I did. I'm just too present. 
Her referral to an ADHD clinic also 
led to a misdiagnosis. I was 
overloaded, the psychiatrist didn't 
ask any specific questions, so the
 decisive criteria didn't even come 
up.My second attempt was finally succes
sful.
I would be interested to know which 
counseling center informed you about
 autism. Were you on "Autism Germany"?
When I received my diagnosis 15 year
s ago, this was still possible with 
a waiting period of about 6 months. 
All you would need to know is that 
you might have autism and where to 
find a professional. There is now a 
huge need for diagnoses, but no 
contact points have been added. So 
you either don't get on the waiting 
list at all or you have to accept 
waiting times of more than three 
years. For example, a friend of
 mine would have to drive about 500
 km to have you diagnosed.
Incidentally, a friend of mine was 
asked a long time ago what a 
diagnosis would do for him, since he
 was now an adult.
There is also no psychological 
support after the diagnosis. If only
 because of the fact that the 
specialists are not familiar with it.
 One can only hope that one knows
 someone within the community who 
might have a tip. It's definitely 
no better here than in the UK.
However, my family doctor is open 
to the topic of autism.
The self-help groups in Berlin 
that I know are accessible to 
autistic people with and without 
a diagnosis. Only the number of 
participants is partially limited.
Would you like to tell where exactly 
you are in Germany?

Hello BillyC87,
I'm glad you're so interested in 
German culture. I feel the same 
about Great Britain and the Anglo-
American region, I think that we can
 also learn a lot from you in terms
 of public relations. I believe that
 a few things could also be improved
 here in Germany.
I live in Berlin and you?
There are now seven self-help groups
 in the capital, but they were founded 
independently of the associations. 
Closer cooperation would therefore 
be desirable here as well.
We have not yet organized joint 
ventures, but maybe that will change.
 Are your groups already in mutual
 exchange?
I wish you a good start into the new 
year. Madrugada

Steven said:

The Government whips us as we work until we drop; afterwards they deport us because being autistic is, apparently, 'woke'.

Lucky you. At least they let you out 
of the country. ;-)(joke)

Steven said:

But seriously: there are many excellent and selfless people who try to help us, often while being underpaid or even unpaid.

In this context, I would be interested 
to know whether there are also clubs 
or initiatives in Great Britain that 
are organized exclusively by autistic 
people.

Hello NAS83342, first of all I would like to thank you for the detailed description of your unfortunately negative experience in Great Britain and I hope for you that this will change soon. I don't have any children and am mainly concerned with the living conditions of adult autistic people, but the situation in German schools is probably a lot worse. It starts with the fact that school policy is decided at the state level and not centrally. With a total of 16 federal states, you can certainly imagine how confusing the regulations are. In addition, there is a chronic shortage of teachers and graduates without previous pedagogical knowledge are also employed as graduates. Ultimately, we even discussed reallocating funds made available for inclusion because the overall situation in the schools is so bad. In Germany there is above all the association "Autismus Deutschland" founded by parents of children in the spectrum, which is committed to supporting autistic children. However, I am a simple member of Aspies e.V., an association that is organized exclusively by adults in the spectrum. The needs of adults with Asperger's autism in particular are almost completely neglected in Germany: starting with the diagnosis, health care and work to other everyday problems. Regarding the title (autism in Germany and Great Britain), my intention was to first exchange general information about the situation in both countries. But direct contact between self-help groups across national borders - at least that's how I understand your suggestion - would also be a good idea. Wishing you you a happy new year. LG madrugada

Thank you very much for your insightful and detailed 
posts and I will try to reply as soon as possible. 
But first some information about me:
I was diagnosed in 2008 in connection with my move to
 Berlin. As you can imagine, the road to get there 
was extremely difficult.
Due to various health and private problems, however, 
I had not dealt with the subject for a long time. At 
the beginning of this year I wanted to visit a 
self-help group again after a long time. However, 
because of the Corona rules, this was not possible 
and so I came up with the idea of ​​founding my own.
 Then things took on a certain momentum of their own 
and I made the decision to get involved beyond that. 
In this context, it is of course also interesting to 
see how the situation is in other countries.

For example, I am a member of the association aspies 
e.V. (aspies.de), which was founded by autistic
 people without the participation of neurotypica
 people. Is there a similar club in the UK?
Although I suspect that aid is better organized in 
Anglo-American countries, I don't think you have a 
project comparable to ASL:
The Autism Research Cooperation (AFK) is an 
association of autistic people and autism scientists 
from the Humboldt University in Berlin. The aim of 
the AFK, which has existed since 2007, is for the 
first time to jointly research questions that are 
relevant from the perspective of autistic adults.
Our research results should contribute in the long 
term to improving the quality of life of people on 
the autism spectrum.

And there would certainly be various other topics 
that could be discussed.

Hi :) I was actually in Germany when I first realised that I might be autistic. It was actually my dietitian from the UK though who first realised that I might be autistic though (I was still seeing her virtually). I then raised the possibility that I might be autistic with the professionals I was seeing at the time in Germany and the mental health ones agreed that it was quite likely to be the case, however the waiting list for diagnosis was very long. My GP knew nothing about autism and almost got mad at me when I raised it. What was great though was that there was a free advice service for autistic people or people that think they might me autistic in my area. I was able to have a meeting with them and spent almost 2 hours there - they ended up doing a preliminary assessment as well as giving me some tips on how to best cope and they even wrote a detailed report for the psychiatrist to recommend that I should be referred for diagnosis (weirdly the mental health team could not do that but I needed to find a psychiatrist... who didn't seem to think it really mattered if I was diagnosed or not... again I feel like she was not very aware of what it means to be autistic and how important it can be to be diagnosed even as an adult). I think there were also groups run for autistic people in my area by a specialised part of the university hospital but that was not accessible without an official diagnosis. I actually never made it through the German waiting list but I did get diagnosed in the UK recently. And I realised that there is no support available here post-diagnosis, which seems disappointing. I am not sure if that is better in Germany. What was great in Germany was this free advice service for autistic people - they were extremely supportive and also send me resources and would have continued to offer support had I stayed in Germany. I feel like it really depends on the person you are seeing though-  some individuals just seem much better informed about autism than others... whereas others just haven no clue... like the GP in Germany... who got mad that someone had suggested that I might be autistic and just completely dismissed it... He was a very good GP in many other ways so I think this was down to a lack of training.... 

Hello Madrugada, I am really interested in your post as I am very interested in Germany and I have often wondered what it is like for autistic people there. I feel like German culture suits me better than English culture. I also love Schlager music

In answer to your question there are support groups in Great Britain, i belong to a local support group that is well funded and they are able to go on trips and things, although I havnt been able to go lately due to my health.

I think Britain is one of the better countries for autism support but there are also better ones if that makes sense 

Whereabouts in Germany are you from?

Oh wow I'm so impressed you are doing this !!!! The people who will benefit from.what you are doing will be very glad this kind of thing you are doing is much needed and invaluable. I may have a different opinion to most on here but sadly me and my son did not experience any help In the UK in fact the opposite it was a sh#! Show and I tried my damndest to get him better schooling therapy etc etc and I'm told there is an organisation called National autistic  society that raises money and does all these things to help (please don't t take offence) but Im angry as we never saw or got any help at all ever nor do we now and my sons life is pretty much ruined .Sorry but my opinion of this country is very low and I am so appalled by the complete absence of any help that I am actually seriously looking to leave the UK and have been scouring the world researching where has the most actually being done to help people with asd..I have seen in Australia they have a lot in place like groups you can attend and get  life skills course they did speed dating..these are just examples. Also in the USA it is very progressive in terms of cannabis being prescribed responsible by doctors etc..I just see a complete lack of progress in this country.Hopefully someone on here maybe able to give you something more positive. You might want to think about changing your title as "autism in uk and germany" isn't enough to make people who maybe able to help you understand what your asking and it is important you get some response as what you're doing is very important..maybe change title to need help setting up new sister asd  groups in the UK ? Or something. 

madrugada said:

I would like to know
what the situation is like for autistic people in
Great Britain

The Government whips us as we work until we drop; afterwards they deport us because being autistic is, apparently, 'woke'.

But seriously: there are many excellent and selfless people who try to help us, often while being underpaid or even unpaid.