Waiting lists for autism and ADHD assessment vary enormously between areas, and the wait is often measured in years rather than months. If you are on one, you have probably already been told to be patient. That is not useful advice on its own.
The useful thing to know is that most of what helps a child does not require a diagnosis first. Here is what is worth doing while you wait, roughly in order of how much difference it makes.
Support does not legally depend on a diagnosis
This surprises most parents, so it is worth stating plainly. Under the SEND Code of Practice, schools and local authorities in England are expected to respond to a child’s needs, not to a label. A school does not have to wait for a diagnosis to put support in place, and an Education, Health and Care needs assessment is not conditional on having one.
In practice a diagnosis often helps, because it makes the need legible and harder to dismiss. But if you are being told nothing can happen until the assessment comes through, that is a description of local custom, not of the law.
Start a record now, and make it boring
The single most useful thing you can do while waiting is keep a plain record. Not a diary of feelings — a factual log.
- Dates and short descriptions of the things that worry you
- What was happening immediately before and after
- How long it lasted, and how often it happens
- What helps, and what makes it worse
- Short phone videos of anything difficult to describe in words
Assessment relies heavily on developmental history, and history is much better when it is written down at the time. Parents routinely undersell their own child’s difficulties in a clinic room, partly from stress and partly because a good day at the appointment eclipses six bad weeks. A log protects against that.
Bring it. Do not summarise it for us — let us read the raw thing.
Talk to the SENCO, not just the class teacher
Every mainstream school in England has a Special Educational Needs Co-ordinator. They are the person who can actually start a graduated response — assess, plan, do, review — and they can do it now.
Ask for a meeting and ask three questions: what have you noticed, what are you already doing, and what would you need to see to do more? Ask for the answers in writing. This does two things: it gets support moving, and it builds the documentary record that any later assessment or EHCP request will rest on.
Get hearing and vision checked
This sounds mundane and it is genuinely important. Undetected hearing loss — including glue ear, which comes and goes — can look very like a language delay or inattention. It is quick to test, free, and rules out a cause that is entirely treatable.
If your child’s hearing has not been formally tested since the newborn check, ask your GP.
Ask what the referral actually says
You are entitled to know what was written in the referral. Referrals get rejected or downgraded because of what they left out rather than what the child is like — no developmental history, no school input, no mention of the things that would have made the threshold obvious.
If a referral has been declined, the reason matters. A referral that was declined for missing information can be resubmitted with that information. That is a very different situation from a decision that the child does not need assessing.
Consider whether you need the diagnosis, or the plan
Some families need the diagnosis: for a medication decision, for a specialist service, for a school placement, or simply because their child is old enough to be asking what is different about them.
Others actually need the plan — a clear account of how this child learns, what they find hard, and what would help. That can often be produced sooner and is what a school can act on immediately.
It is worth asking yourself which of the two you are waiting for, because they are not always the same wait.
If you do go private, stay in the NHS queue
A private assessment does not remove you from the NHS list, and leaving it is rarely wise. If you later need an NHS service — a community paediatrician, medication, or a specialist team — the queue position you gave up will not come back.
Where we fit
We assess children privately at our Ickenham clinic in West London, and how we assess explains what that involves. If what you actually need is a second opinion on a declined referral, or a view on whether assessment is the right next step at all, that is a reasonable thing to ask before booking.
This article is general information about how assessment and school support work in England. It is not advice about your individual child. If you have an urgent concern about your child’s health, contact your GP or NHS 111.