Child neurodiversity assessment waiting lists: A calm UK guide

If you are waiting for a child autism or ADHD assessment, stuck on a referral list, or unsure what your options really are, you are not alone. The UK system can feel slow and confusing, especially when you are worried about your child. This article explains what is happening and what calm, realistic options may be available while you wait.

TL;DR

Waiting for assessments in the UK can feel endless, but there are usually more paths than it first appears.

• NHS waiting lists are long, but being on a list still matters
• Referrals usually start with your GP, health visitor, or school
• The Right to Choose may offer an alternative route in some areas
• Private assessments exist, but they come with trade‑offs
• You can support your child and work with the school while you wait

This article is for / not for

This article is for:

• Parents waiting for autism, ADHD, or developmental referrals
• Families feeling stuck or confused by NHS processes
• Parents who want calm clarity rather than pressure or panic

This article is not for:

• Families seeking a diagnosis checklist or assessment criteria
• Parents looking for urgent medical advice
• Situations where immediate safeguarding concerns are present

Medical disclaimer

This article shares general information and lived experience around navigating referrals and waiting lists. It does not diagnose, treat, or replace professional medical advice. If you have urgent concerns about your child’s health or safety, contact your GP or NHS services directly. For official guidance, see the NHS and NICE websites.

Before anything else: What being on the waitlist doesn’t change

One thing that can help early on is remembering this: a diagnosis does not change who your child is.

Whether the assessment happens this year or in three years, your child will still have the same personality, strengths, challenges, and needs. A diagnosis does not create those needs. It simply gives them a name and, importantly, opens doors to support.

It can also help to know that schools still have responsibilities, diagnosis or not. If your child is struggling, schools are expected to make reasonable adjustments and offer support based on need, not just paperwork. Many forms of help should not be put on hold while you wait.

That does not make the delay easy. But it can take some of the pressure off the feeling that everything is stuck until a report arrives.

When waiting becomes the hardest part

For many parents, the waiting is harder than the referral itself. You have raised concerns, taken the brave step of asking for help, and then everything slows down. Letters take months. Appointments feel distant. It can feel like nothing is happening, even though something is.

One thing that surprised me was how much emotional energy the waiting takes. You are not just waiting for a date. You are holding questions about your child’s future, school support, and your own parenting decisions.

How referrals usually work in the UK

This article focuses mainly on England, where pathways like Right to Choose exist. If you live in Scotland, Wales, or Northern Ireland, referral routes and waiting list systems differ, and assessments usually follow local NHS pathways rather than Right to Choose.

Most referrals begin through one of three routes:

• Your GP
• A health visitor or paediatrician
• School or SENCo raising concerns

Once a referral is made, your child is placed on a waiting list. This matters. Even if the list is long, it often becomes the gateway to support later, including school adjustments and formal plans.

Waiting times vary widely by area. Some families are seen within months. Others wait years. This variation is frustrating, but it is not a reflection of how valid your concerns are.

Understanding the Right to Choose

The Right to Choose allows some NHS patients in England to choose an alternative provider for certain assessments, including ADHD and autism, if the service is commissioned by the NHS.

This route:

• Still requires a GP referral first
• Applies in England only; Scotland, Wales, and Northern Ireland follow local NHS pathways
• Is not available everywhere or for every pathway
• May reduce waiting time, but not always immediately

It is also worth knowing that some GPs are unfamiliar with the Right to Choose process. This can mean they may say it does not exist, or may not know which providers are currently accepting referrals, particularly for children.

This is usually a systems issue rather than unwillingness, and asking for clarification or written guidance can sometimes help.

It can feel like a hidden option, and many parents only hear about it through other families. Asking your GP about it is reasonable. It is not jumping the queue. It is using an existing pathway.

Private assessments: what parents should know

Private assessments can feel tempting when waiting lists stretch on. For some families, they are a practical choice. For others, they create new complications.

Things parents often weigh up:

• Cost and financial pressure
• Whether schools or local authorities will accept reports
• The emotional weight of paying for clarity

A private assessment does not automatically unlock NHS support. Some families use private reports to inform school support while remaining on NHS waiting lists.

What support is available while you wait

Waiting for an assessment can feel like being in limbo, but support is still available during this time. A diagnosis often unlocks additional help, but it is not the starting point for support.

Here are some realistic forms of support parents often access while waiting.

Support through school (without a diagnosis)

Schools are expected to respond to a child’s needs as they present, not only after a diagnosis, in line with the SEND Code of Practice.

This may include:

• Reasonable adjustments in the classroom
• Additional help from teaching assistants
• SEN support plans or targeted interventions
• Behaviour or learning strategies tailored to your child

You do not need to have all the answers. Sharing what you are noticing at home can help schools put support in place.

Local authority and community support

Some areas offer support before assessment, such as:

• Parenting courses linked to behaviour, emotional regulation, or SEND
• Local SEND information services (often called SENDIASS)
• Short‑term family support or early help services

Availability varies by area, but a good starting point is often the school SENCo, followed by your GP, or your local authority’s SEND or Early Help team. Asking what exists locally can sometimes uncover options you did not realise were there.

Health and wellbeing support

While waiting, families may still be able to access:

• Speech and language support for specific difficulties
• Occupational therapy advice for sensory needs
• Mental health or wellbeing support if anxiety or distress is affecting daily life

These supports are often based on need rather than diagnosis, though access and thresholds differ.

Support for parents themselves

Waiting lists can take a toll on parents too. Some parents find national charities helpful at this stage, such as the National Autistic Society, ADHD Foundation, Scope, Mind, or Contact, which offer helplines, practical advice, and reassurance while families wait.

Many find it helps to:

• Talk to other parents in similar situations
• Access local or online support groups
• Ask professionals for written advice or strategies to try

Looking after yourself is part of supporting your child, not a separate task. When parents are exhausted, anxious, or constantly firefighting, it becomes much harder to think clearly, communicate calmly with professionals, or notice what is and is not helping their child.

Giving yourself permission to pause, seek reassurance, or share the load is not stepping back. It is what makes steady, effective support possible over the long term.

A note on not going into battle mode

When systems feel slow or unresponsive, it is very understandable for parents to slip into what people often call “battle mode”. It usually comes from fear, protectiveness, and exhaustion rather than anger.

What is often less visible is that most teachers, SENCOs, GPs, and local authority staff are also working under pressure, limited funding, and long waiting lists. Very few people involved wake up wanting to block support or make life harder for families.

That does not mean failures do not happen. They do. But approaching conversations calmly, focusing on your child’s needs rather than blame, and seeing professionals as partners rather than opponents often leads to better outcomes over time.

You are allowed to advocate firmly for your child without having to fight everyone in front of you.

What next: What helps while you wait

Waiting does not mean doing nothing. What you notice and do during this time can actually make the assessment itself easier and more accurate.

For example, sharing simple notes about what your child struggles with, what helps them cope, and what support is already in place at home or school can help clinicians understand your child beyond a single, short appointment.

This might be as straightforward as noting that your child copes better with clear routines, finds sudden changes overwhelming, or settles more easily when given extra processing time.

Many parents find it helpful to:

• Keep notes of patterns, challenges, and strengths
• Share concerns with school in practical terms
• Focus on what helps day‑to‑day, rather than labels

Support often starts before diagnosis. Small adjustments at home and school can make a meaningful difference.

If you want to explore related topics gently and at your own pace, these articles may help:

• Understanding neurodiversity in children
• Signs of ADHD in children
• Autism traits that do not match stereotypes

For clear, trusted guidance on referrals and assessments, these UK resources are helpful:

• NHS guidance on autism assessments
• NHS ADHD services overview
• National Autistic Society: Right to choose
• NICE guidelines on neurodevelopmental conditions

A calm way forward

If your child is on a waiting list, you have already done something important. You noticed your child. You asked questions. You started a process that, even if slow, exists for a reason.

The system is imperfect. The waiting can be hard at times. You do not have to rush every decision, and support does not have to come from one place or one person. One step at a time is enough.