Autism diagnosis and help in Germany
How to get your neurodivergent child a diagnosis and support
This is in the main a personal journey, individual to our family, but I aim to signpost others to available services in Germany in this piece.
When I moved to Nuremberg from London in 2019, this had several reasons, but among them was a belief that I would be able to access the diagnostic process and available help here much quicker for my child, who was then 4.
Since the age of 3, my child had had several noticeable differences to most of his peers, which were mostly around transitions (drop-off at nursery for example), behaviour (some repetitions, comfort in routine), sensory sensitivities (labels in clothes, food touching/texture) and social communication.
My child also seemed unusually distressed in certain circumstances, and nursery offered art therapy. Especially as this was conducted by a male therapist this was seen as helpful by their key worker, and my child enjoyed receiving one-on one attention during those sessions.
Nobody believed any of those issues were indicative of a neurodivergence in some way, preferring to point the finger at my being a solo parent by choice; now I know that this is a phenomenon called “parent blaming” and that autism, ADHD, giftedness, dyslexia etc are, just like diabetes or a heart defect, invisible conditions.
After all, my child was fully verbal, bilingual, intelligent, toilet trained, and did not seem in any way disabled, especially when interacting with an adult one-on one.
Things started to go downhill for my family as my child started school, having recently turned 4.
We were enormously fortunate to receive a place at the CofE primary of my choice, but the settling-in process was difficult, followed by many mornings of tears, worries and stress.
I raised my concerns with the teacher, but she only tried to reassure me that she had not witnessed anything of concern.
2 months later, this was already a different story, when the teacher had observed play behaviour that differed from the norm, the trouble my child was having with transitions, and stress behaviours as well as repetitive stims.
School started in October, and when in December the class made plans to visit a Westend show, I volunteered as a chaperone but was turned down by the school. I had several meetings with their SENDCO (Special educational needs and disabilities coordinator, a position I have since discovered doesn`t exist in most German schools), several of which were not actioned in any way.
The class had two assistants, but I still felt it was essential for my child to have a person accompanying them on this trip (by tube into central London, and sitting quietly in a dark theatre), so I bought myself a ticket and went along.
As it turned out, this was the right decision, because whilst on the way there I needed to help regulate my child in a minimal way, on the way back they were so overwhelmed and stressed that they were crying and almost refusing to walk.
Many parents will recognise this type of overwhelm and need for co-regulation and reassurance in their children, but one of the teaching assistants repeatedly praised another child for “walking nicely” and not making a fuss, making direct digs at my child in the process. As if anyone has ever been motivated or calmed by being shamed and criticised when experiencing a crisis!
School eventually referred our case to the social communications team, and now it was down to an unknown wait. Next on the agenda would be a visit of their team to the school and observing my child in the classroom, but before this took place I made the decision to move.
Despite the (lack of) efforts by the school, I only saw continued stress and discomfort in my child, whilst academically they were achieving well. Again I volunteered to help the children get changed for the nativity (please remember we are talking about 25 four-year-olds, some of whom were still having regular toileting accidents!), and was turned down.
That day of 2 performances to a dark theatre of friends and family under harsh lights didn`t end well for my child, despite them knowing the entire song catalogue off by heart, including the texts of the higher years.
I had seen enough and made the decision to move. I felt the health system was bound to be better than the ailing NHS, and I was craving family support.
When I received the offer of a nursery place for my child in January 2019 and found a flat, this was my green light to up sticks in London and move to Germany.
School starts aged 6 or 7 here, and I felt there would be less pressure on my child to read a book every day (which they struggled with) at age 4.
My first indication that Germany would not be a smooth ride for us in comparison, were the hurdles the nursery put in our way for my child to start attending there. Whilst the admin staff had welcomed my application and told me a place was available, and the call with the leader of the group in question had gone well, once we had moved I was told that now the nursery was in the process of “choosing a family”, so it was not like my child`s place was secure at all.
We attended several times to make the nursery like us, but the experience and process were very alien to me. Far from being able to attend in the month of our move, the group leader fobbed us off until April, by which time I had written a begging letter and used up nearly all my savings because I was jobless.
Added to this was a serious bereavement, as my dad had died shortly before our move and I needed to sort his affairs. Trying to do all this with an unsettled four-year old in tow was very difficult, despite my mum`s reliable support when she wasn`t working.
During my conversations with the nursery staff I had not mentioned that I was on the pathway to a diagnosis for my child, because I instinctively felt that this would count against us when it came to being offered a place!
Again this was a different experience compared to the UK, where children with disabilities, those in care or in other precarious circumstances get specially allocated places by default and don`t need to compete with “regular” families for a space.
For the second time, Germany`s insufficient compliance with the CRPD has been the subject of an investigation in Geneva, and a statement by German disability organisations in English is available here:
https://www.mittendrin-koeln.de/aktuell/detail/der-uno-ist-unser-foederalismus-egal
All of this was news to me at the time, and most recent developments date back to 2023 and this year, not 2019.
I should mention at this point that this was a private nursery, but even the alternative provisions I visited, even those with an “inclusion profile” did not offer me a place for my child to start straightaway. I was unaware at this time, that unlike in the UK, intake for children at nurseries is almost exclusively during September, with places confirmed by the previous January to March.
Eventually, my child was able to start at the nursery part-time from April, but their cooperation with external services was poor and I felt like a trail-blazer - although the we had only recently moved and the Convention on the Rights of Persons with Disabilities had been signed by Germany in 2009, there was almost no sign-posting available.
On to some useful and current advice for those in similar situations:
Not all practises/clinics are competent in diagnosing autism. Try to reach out to local parent support groups, to find out where people had a good experiences and felt heard and seen.
Autismusambulanz, Autismusverein and Autismuskompetenzzentrum are terms I would advise you to google.
Once you have found a KJP (Kinder- und Jugendpsychiater or clinic) that has taken the necessary steps to diagnose your child, funding is the next hurdle.
In children with intellectual disabilities or those who are not yet in school, autism therapy and an assistant (Autismusspezifische Therapie; Inklusionskraft) are funded by the “Bezirk” in Bavaria, the local authority, which may however not be located in your particular town but responsible for a whole district. For school-age children, those measures (Therapie, Schulbegleitung) are funded by child services (Jugendamt), more specifically the ASD (allgemeiner Sozialdienst). Additional therapies such as OT (Ergotherapie) or psychotherapy are funded by your health insurance (Krankenkasse). If you decide on a Kinder-Reha this needs to be indicated by your pediatrician, and funding needs to be applied for from the Rentenkasse (pension insurance).
All of these measures are also independent of a firm diagnosis, if your child is “threatened by a disability”, according to § 35a SGB VIII they have a right to this support and reasonable accommodations (angemessene Vorkehrungen).
You may decide to apply for a Pflegegrad (grade of disability) for your child; for this it is useful to do an online calculation , to determine if what you do on a regular basis for your child, and what they`re able to do for themselves is age appropriate or requires support. It is often advisable to be prepared to put in for a mandatory reconsideration (Widerspruch einlegen), should this be unsuccessful, and get advice and support before the MDK visits your family to meet your child and assess their disability. EUTB, Lebenshilfe or an autism charity/association would be good to go to for preparation for this. If your child is determined to have a PG of 2 or above, a monthly stipend is paid to their primary carer, and in Bavaria you receive an additional €1000 per year.
A disability card (Schwerbehindertenausweis) is issued to everyone determined to have a disability of 50 and over (Grad der Behinderung or GdB), again this needs to be applied for! Link: https://www.schwerbehindertenantrag.bayern.de/onlineantrag/. The application has to be accompanied by relevant medical records.
This pass serves to prove that the person has a recognised disability; it can be used for discounts, free public transport, waiving of car tax, to skip queues at government offices, and depending on the letters issued on the card, may entitle you to accompany your child free of charge on public transport etc., as well as tax breaks.
If you feel your child would benefit from a school assistant, usually there are several companies (Träger) offering this service, and they`re generally found for the family by the ASD as long as all relevant paperwork has been submitted in advance, such as an application for this measure, a developmental report by the child`s nursery and diagnosis if there is one. However it can be notoriously difficult to find staff for this job, and it can help to find your own person, for example via local facebook groups or nebenan.de, who can then apply for a Schulbegleiter position with the relevant Träger company. The last word for a school assistant lies with the school however, who have the domiciliary right over who works in the school building. The supervisory responsibility for your child will remain with the school.
Many parents feel institutionally gaslit, and like they`re being sent from pillar to post in their long journey for a diagnostic answer and therapeutic support for their child, so don`t give up! On average I have found that kids in Germany, especially girls, often don`t receive a diagnosis until their tweens or early teens, where in the UK despite horrendous waiting lists, more of an awareness of ASD (including “Aspergers”) exists, and accommodations are put in place much sooner.
Please leave your comments and questions on this article below, and feel free to share it with friends - thank you!
Kindly bear in mind I have written this as a layperson, and this piece should serve as signposting help and not legal advice, it is based on my personal opinions and experiences.
As for my child, they were lucky to have the same classroom assistant from the beginning of primary school until just before Christmas 2023, and are now being supported by a new assistant for their final few months before transition into secondary school and beyond.
At one point, they also had an afternoon assistant (in “Hort”), as well as a taxi transport to the location, don`t let anyone tell you that your child is only entitled to a limited amount of support to thrive and succeed in their participation and education!