Before the diagnosis
You sense that your child is developing differently — but there is no diagnosis yet. This is the longest phase, and often the loneliest.
In Germany, months often pass between a first suspicion and a finished assessment report. Many parents feel left alone during this time: the worry is there, a name for it is not, and every office seems to be waiting for a piece of paper that does not exist yet.
The most important thing first: you do not have to wait for the diagnosis in order to act. A great deal is already open to you — some of it explicitly on the basis of a suspicion alone.
How long does it really take?
There is no official statistic. Experience suggests waits of roughly three to nine months for an assessment appointment at specialized children’s clinics. For a therapy place at an autism therapy center, the professional society DGSPJ reports waits of sometimes a year or more (as of 2023).
That is frustrating, and there is little point in dressing it up. What helps is knowing what is possible in the meantime.
Six things that work without a diagnosis
None of these requires a finished report. You do not have to tackle them all at once either — even one of them changes the waiting time.
Call Frühförderung
Interdisciplinary early-intervention centers (Frühförderstellen) advise and support children up to school age – no diagnosis, no referral, free of charge. A phone call is enough to get an appointment.
Know § 35a SGB VIII
Integration assistance (Eingliederungshilfe) for children with a mental or emotional disability applies explicitly also when a disability is imminent. So an application to the Jugendamt (youth welfare office) is possible before the diagnosis; what is needed is a medical statement, not a completed report.
Have Heilmittel prescribed
Speech therapy (Logopädie) and occupational therapy (Ergotherapie) are prescribed on the basis of symptoms – that is, for what your child concretely needs, independently of an autism diagnosis. Raise it with your pediatric practice.
Check for a Pflegegrad
For a care level (Pflegegrad), what counts is the need for help in everyday life, not the diagnosis. The application to the Pflegekasse is informal, and benefits start from the month of application – so applying early pays off.
Find other parents
The regional associations of autismus.de and parent forums such as rehakids.de share experience that no authority can give you – and take away the feeling of being the only one.
Keep observing
Write down what you notice: in which situations, how often, what came before. These notes feed into the assessment later and count for more there than many parents expect.
Where to take your suspicion
The first step almost always goes through the pediatric practice – not least because referrals originate there. The U7a check-up at the age of three is a good occasion to raise what you have noticed.
Depending on the situation, the next options are the Frühförderstelle (up to school age, no diagnosis needed), the Sozialpädiatrisches Zentrum (SPZ, social pediatric center), child and adolescent psychiatry (KJP) and specialized autism outpatient clinics. Which one fits depends on your child’s age and on what needs to be clarified.
For the search, the SPZ directory of the professional society, the regional associations of autismus.de and the appointment service under the phone number 116117 all help.
What happens during the assessment
A careful assessment is not a single appointment but a series: conversations with the parents, standardised questionnaires, observation in play situations, often an assessment from daycare or school as well. It takes time – and the fact that it does is a good sign.
At the end there is a written report. It is the basis for almost everything that follows: applications, compensatory measures at school, therapy places. Keep it safe and ask for copies.
What the difference between a screening and a full assessment is, is explained in detail in the background text on the subject.
Read on in depth
The free Mika Guide accompanies exactly this phase step by step – with five detailed articles on first signs, where to turn, finding assessment centers near you, the waiting time and how an assessment proceeds. It downloads about 3,7 MB once, then works offline and needs no account.
If you are looking for the scientific background: the knowledge base brings together 306 studies from 2015 to 2026, each checked twice.
Note on the legal information
This information has been compiled to the best of my knowledge, but it is not legal advice — laws, amounts and procedures change, and every case is different. What is binding is the applicable law and the decision of the responsible authority; I cannot accept liability. For important decisions, the free independent participation counseling (EUTB) or a social welfare association can help.
Are you waiting right now – and unsure what to do with it?
For many families, the time before a diagnosis is the hardest. A first conversation is free and without obligation.