Everyone agrees early intervention matters. What nobody explains is the part families find hardest, which is not knowing what to do, but getting the system to take them seriously in the first place.
Parents are told to mention it at the next review. They are told most children catch up. They are told the health visitor will keep an eye. Months pass. This article is about navigating the referral process in the UK, including what to say, who can refer, and what to do when you are dismissed.
Who Can Actually Start the Process
Referral routes differ by age and by nation, which is itself a source of confusion.
Under school age: your health visitor, your GP, or your nursery through their SENCO. Any of them can initiate a referral, and you do not need all three to agree.
School age: your GP or the school SENCO, often with input from the school nurse.
In England, once a referral for assessment is agreed, Right to Choose may let you ask for referral to any provider holding an NHS contract rather than only the local service. You cannot self-refer, so your GP must make it.
In Scotland, Wales and Northern Ireland, Right to Choose does not apply, and local pathways differ. Ask specifically how referral works in your area rather than assuming England guidance applies.
Preparing the Case Before You Ask
Referral conversations are short. Parents who arrive with evidence get further than parents who arrive with worry, and that is a practical observation rather than a criticism.
Build a Two-Week Record
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Specific examples with dates, not general descriptions
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What your child does and does not do compared with siblings or peers at the same age
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Sleep, eating and digestion, which are relevant and frequently omitted
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Anything a nursery, childminder or relative has independently noticed
Write One Paragraph
Before the appointment, write a single paragraph summarising your concern in concrete terms. Read it out if you need to. Appointments run short, and anxiety makes people vague, and vagueness is what gets filed under reassurance.
Use Specific Language
Rather than "he seems behind," say "he has four words at twenty-two months and does not point to show me things." Rather than "she struggles socially," say "she has not joined another child's play in six months at nursery."
Specific observations are harder to defer.
What to Say When You Are Told to Wait
Being told to wait and see is extremely common, and it is sometimes appropriate. It is also the default response when a professional is uncertain, and it costs you months.
Three responses that tend to work:
"What specifically would you want to see before referring?" This converts a vague deferral into criteria you can return with.
"Could we make the referral now, given the waiting list, and withdraw it if things change?" Given that waits frequently exceed a year, time on the list is rarely wasted.
"Could you record in the notes that I raised this today, and what was decided?" Entirely reasonable, and it creates the record that supports a later request.
If you are declined twice with the same concern, you may request a second opinion through your GP, and you may ask nursery or school to refer in parallel.
What Happens After Referral
Expect a long wait. Expect it to be longer than the three months NICE guidance sets out, since roughly nine in ten people wait beyond thirteen weeks.
Use the time rather than spending it waiting. Nothing below requires a diagnosis:
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Establish sleep timing, which is the highest-value change available
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Investigate constipation and feeding difficulty properly
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Accept and encourage every form of communication, including gesture and signing
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Request SEN support at nursery or school
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Reduce sensory load at home and build in recovery time
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Keep the record going, since it strengthens the eventual assessment
Keeping Records That Hold Up Later
This is the administrative part families wish they had started earlier.
Keep one folder containing every letter, every appointment date, every professional's name, and a short note after each meeting recording what was said and agreed. Add nursery and school communications.
If you later apply for an EHCP, appeal a decision, or move areas, that folder is the difference between an evidenced case and a reconstructed one.
Where Independent Support Fits While You Wait
Independent support cannot speed up an NHS assessment and should never be presented as a substitute for one. What it can do is address the physical difficulties affecting your child now, particularly sleep, digestion, appetite and restlessness, which do not need a diagnosis to be treated.
At ND Care we see families at exactly this stage, and the first thing we say is to keep pursuing the NHS referral. Anyone advising otherwise is not acting in your child's interests.
The Appointment You Can Book Tomorrow
If this has been sitting in your head for months, the next step is smaller than it feels. Book a GP or health visitor appointment. Take two weeks of specific observations. Read your one paragraph.
Ask for the referral, and ask for it to be recorded either way. That single appointment is what moves families from worrying to being in the system, and the sooner it happens the shorter the wait ends up being. Meanwhile, our team can look at the physical difficulties with you, and you can arrange that here.
Frequently Asked Questions
Can I refer my child myself?
Generally not for NHS autism assessment. Referral comes from a GP, health visitor, or nursery or school. You can request a referral from any of them.
What is Right to Choose and who can use it?
An NHS patient choice route in England allowing referral to any provider holding an NHS contract. You must be registered with a GP in England, and your GP must make the referral.
What if my health visitor says to wait?
Ask what they would need to see before referring, ask for your concern to be recorded, and consider asking nursery to refer in parallel.
How young is too young to raise concerns?
There is no lower limit for raising a concern. Patterns are often visible before two, and support for sleep, feeding and communication can begin immediately.
Does the process differ across the UK?
Yes. Right to Choose applies in England only, and pathways in Scotland, Wales and Northern Ireland differ. Ask locally how referral works.
Can we start support before the assessment?
Yes, and you should. Sleep, digestion, communication and school adjustments all proceed without a diagnosis.