Before the diagnosis
You have questions about your child’s development and no diagnosis yet. While waiting for an assessment, you can organise your observations and ask about suitable support.
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.
In the United Kingdom that sentence is even more true, and more urgent. In March 2026, 270,701 people in England had an open autism referral, and around nine in ten had been waiting longer than the 13 weeks NICE recommends before a first appointment. Nothing you need makes you wait for the report: an EHC needs assessment in England turns on whether a child has or may have special educational needs, and DLA and Child Disability Payment are decided on the help your child needs, not on a label.
Two things are worth doing today rather than next month. In England you can use Right to Choose when your GP makes the referral and pick a qualified NHS provider with a shorter waiting list — NHS-funded, not private. And a DLA claim is not backdated: it starts the day you ring for the form, never earlier. What to apply for in the UK, and when →
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
Early intervention services are a first point of contact if you are worried about your child’s development. Ask about their initial advice service. The service can explain which further assessments, referrals and support may be needed.
Know § 35a SGB VIII
Section 35a SGB VIII also considers a risk of disability in the legal sense of “drohende seelische Behinderung”. The youth welfare office assesses the conditions, including actual or expected restrictions on participation, and explains which professional assessment is required in your individual case.
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.
When the suspicion comes late
Not every path begins in kindergarten. Many girls and women are only recognised in puberty, at university or as adults — not because the autism arose later, but because it stayed invisible for longer. Adapting at great cost (“masking”) can work for years; it often becomes visible only as exhaustion, anxiety or depression. The diagnostic instruments, too, were developed largely on boys. A late diagnosis is not a missed opportunity — it explains a great deal in retrospect.
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
Mika Guide helps you organise early observations, find services and prepare for assessment appointments. Basic guidance is free; additional in-depth content is labelled Mika+.
If you are looking for the scientific background: the knowledge base brings together 308 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.
Status: August 2026. Law, amounts and procedures change — in the UK, benefit rates are normally uprated every April. What applies at the time of your application is what counts; please check it with the office responsible.
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.