The waits are real
Assessment waiting times for autism and ADHD in the UK are long, and in many areas they run to years rather than months. This varies enormously depending on where you live.
That's the situation. This guide is about what's available to you while you're in it, because the honest answer is: more than you've probably been told.
The single most important thing
Support does not require a diagnosis.
Schools have a legal duty under the SEND Code of Practice to identify and support children with special educational needs. That duty is triggered by need, not by a diagnosis. A school cannot lawfully refuse to put support in place on the grounds that you're still waiting for an assessment, and if someone tells you they can, that is wrong.
The same applies at home. Every strategy that helps an autistic or ADHD child works just as well on a child who hasn't been assessed yet. You don't need permission to make the environment easier.
If you take one thing from this page, take that one. Many families lose two or three years waiting for a piece of paper before starting things they could have started immediately.
Getting the referral right
If you're not yet on a list, or your referral was rejected:
Go through the GP or the school. Routes vary by area — some accept parental referral, some require school involvement. Your local authority's SEND Local Offer website sets out the pathway where you live.
Take written evidence. A short, factual summary carries much more weight than a description in a ten-minute appointment. Include specific examples with dates and settings, not interpretations. "Cannot follow a two-step instruction; on 14 May was asked to get his book and line up, and did neither" is stronger than "he doesn't listen."
Describe the worst days as well as the average ones. Parents often understate, partly from habit and partly from having normalised things. If the appointment goes well because your child performs well in a novel one-to-one setting, say so explicitly.
Ask the school to contribute. Their observations often carry disproportionate weight in referral decisions.
If it's rejected, ask why in writing, and ask what evidence would change the decision. Rejections are sometimes about missing information rather than a judgement that nothing is going on.
Right to Choose (England)
In England, patients have a legal right to choose their mental health provider for a first outpatient appointment on referral from a GP. In practice this means a GP can refer to an alternative NHS-commissioned provider, which for some families has been substantially faster than the local service.
Points to be aware of:
- It applies in England, and the rules for under-18s and for specific pathways are not always straightforward
- Your GP has to agree to make the referral
- The provider must be NHS-commissioned for that service
- Shared-care arrangements for medication afterwards are not guaranteed, and some GPs decline them, which is worth asking about before you start rather than after
Ask your GP directly whether it's an option in your case. ADHD UK and the National Autistic Society both publish current information on how this is working, which is worth checking as the position changes.
Private assessment is the other route, and the main things to check are that the assessor is registered with the relevant professional body, that the assessment is a full multi-informant one rather than a single questionnaire, and what happens afterwards regarding any prescribing.
What to do while you wait
At home
Start with the environment rather than the child. Reduce sensory load, add predictability, warn about changes, shrink instructions to one step, put the plan somewhere visible instead of in their head, protect sleep, and stop treating regulation behaviours as misbehaviour.
Keep a light record. Not a surveillance project — just a note when something significant happens, what preceded it, and what helped. Six months of this is genuinely useful at an assessment, and useful to you in spotting patterns.
Look after yourself and any other children. Waiting lists are long enough that running yourself into the ground is a real risk, and it doesn't help anybody.
At school
Ask for a meeting with the SENCO. Go in with specifics rather than a general concern, and ask for the support to be written down.
Things you can reasonably ask for without a diagnosis: movement breaks, ear defenders, a time-out card and named safe space, instructions given one step at a time and in writing, reduced copying from the board, seating changes, advance warning of changes, an alternative to the canteen, help with unstructured time, and a pupil passport shared with all staff including cover.
Ask what's being recorded on the SEN register, and request the graduated approach — assess, plan, do, review — with dates for review.
If the school isn't engaging, IPSEA and SENDIASS both provide free advice on your legal rights. SENDIASS is a local statutory service in every area.
Support that doesn't need a diagnosis
Local parent carer forums, autism and ADHD charity helplines, peer support groups, early help through the local authority, and school counselling or pastoral support are all typically open to families without a diagnosis. So are Family Hubs in areas that have them.
Managing expectations about the diagnosis itself
Two things families often aren't told.
A diagnosis is a description, not a service. In many areas, very little automatically follows it. It can strengthen your case for support, help with exam access arrangements, and open the door to medication where relevant — but the support you get afterwards will still largely depend on what you and the school put in place.
It also isn't the end of the emotional process. Relief is common. So are grief, anger and a period of re-reading the last ten years. That's normal and doesn't mean anything has gone wrong.
Where to get help
- SENDIASS — free, impartial statutory advice on SEND in your local area
- IPSEA — legal advice on education rights and appeals
- National Autistic Society — helpline and information
- ADHD UK — information and peer support
- YoungMinds Parents Helpline — mental health support for parents
- Your local authority's SEND Local Offer — pathways and services where you live
General information, not legal or medical advice. Referral routes, waiting times and Right to Choose arrangements vary by area and change over time — check current details with your GP, SENDIASS or your Local Offer.