If you have been told the wait is 18 months, or two years, or longer, and your child is struggling right now, that gap can feel impossible. You are not imagining how hard this is.
The waiting list for an autism assessment in the UK has grown significantly over recent years. Many families are told to simply wait, as though nothing useful can happen until a clinician confirms what you may already know in your bones. But that is not true. There is a lot that can happen in the meantime, and some of it can make a real difference to your child’s day-to-day life.
This post is not about rushing the system or pretending the wait is fine. It is about what you can actually do while you are in it: how to support your child, how to protect your own energy, and how to build a picture that will be useful whenever that appointment finally arrives.
Why the wait feels so destabilising
Part of what makes the wait so hard is the uncertainty. You may feel as though you cannot get the right support for your child until someone official puts a name to what is happening. Schools, GPs, and other services sometimes reinforce this, linking access to support with a formal diagnosis.
But a diagnosis is a description, not a permission slip. Your child’s needs exist whether or not a report has been written about them. The distress, the sensory overload, the difficulty with transitions, the exhaustion after school: all of that is real and present right now.
Understanding this reframe can help. It shifts the question from “how do we get a diagnosis?” to “what does my child need today?” Those two questions are not the same, and the second one is something you can start answering immediately. It also tends to produce a more useful conversation with schools and other professionals, because it is grounded in observable behaviour rather than a label that has not yet been assigned.
What you can do while you wait
Start here: keep a detailed, dated log of what you observe. Note what situations your child finds difficult, what helps, what makes things worse, and how their presentation changes across different environments. This log has two functions. It helps you spot patterns you might otherwise miss, and it becomes valuable evidence for the assessment itself.
A useful next step is to request a meeting with your child’s school, specifically to discuss what support can be put in place now. Schools do not need to wait for a diagnosis to make reasonable adjustments. The Special Educational Needs and Disabilities (SEND) Code of Practice is clear that support should be based on need, not on diagnostic category. If the school is resistant, the term to know is “SEND Support”, which is the first tier of additional help available to any child with identified needs.
You might also look into what your local authority’s Local Offer includes. Every local authority in England is required to publish a Local Offer: a directory of services available to children with SEND and their families. Some of those services are available without a diagnosis.
Supporting your child’s emotional world right now
Children who are waiting for an assessment are often acutely aware that something feels different about how they experience the world. They may not have words for it, but many will have a sense that things that seem easy for other people feel very hard for them. This can quietly affect self-esteem.
One of the most protective things you can do is to narrate what you see, without pathologising it. Phrases like “you find loud places really overwhelming, and we can plan for that” or “transitions are hard for your brain, so we are going to give you more time” communicate two things at once: that you see them, and that the challenge is manageable.
Protect your child’s energy by looking at where it is being spent. The school day, for many autistic children, involves a significant amount of masking: suppressing natural responses in order to fit in. This can mean that home is where the exhaustion surfaces, often in the form of big emotional reactions or withdrawal. If this pattern feels familiar, building in low-demand, low-stimulation time after school can help. It is not a reward system. It is recovery.
Looking after yourself in the wait
It would be easy to skip this section, but we are including it because parental wellbeing is directly connected to how much capacity you have to support your child.
The wait for an assessment is often accompanied by self-doubt. You may have been told by someone, perhaps a GP, a teacher, or a well-meaning relative, that you are overreacting, or that your child will grow out of it, or that all children are like this. When that happens repeatedly, it can erode your confidence in your own observations.
You are not overreacting. If something is consistently hard for your child, that is information. Trust it.
Connecting with other parents in similar situations can help, not because they have answers you do not, but because the experience of being believed is genuinely sustaining. Organisations like the National Autistic Society and local parent carer forums can be a starting point. You do not have to do this alone, and finding one other person who understands can change how the whole wait feels.
The wait is not wasted time
The assessment, when it comes, will matter. A formal diagnosis can open doors to support, give your child language for their own experience, and provide a framework that is genuinely useful. We are not minimising that.
But the months or years before it are not a holding pattern. They are time in which you can build a detailed picture of your child’s needs, establish relationships with school, start to understand what helps and what does not, and create home environments that genuinely support them.
None of that work is wasted. In fact, families who arrive at assessment with a clear log, a working relationship with school, and a good understanding of their child’s patterns often find the process itself goes more smoothly.
If this feels hard right now, that makes sense. Start with one thing: the log, the school meeting, or simply giving yourself permission to trust what you are seeing. A useful next step is always smaller than it seems.
