If you’re waiting months or even years for your child’s ADHD, autism, or mental health assessment, you are not alone. Across the UK, families face long delays for specialist support, often without clear timelines or guidance. The waiting period can feel endless and isolating, but there are ways to protect your child’s wellbeing—and your own—while navigating the system. This guide explores why the waiting lists are so long, what you can do while you wait, and where to find emotional and practical support along the way.
The Emotional Weight of Waiting
The waiting process can be just as hard as the diagnosis itself. Many parents describe it as “living in limbo.” You know something isn’t right, but without a formal diagnosis, it’s hard to access targeted help at school, from CAMHS, or even from your GP.
It’s normal to feel a mix of frustration, guilt, and helplessness—especially when your child’s struggles are dismissed as “behavioural” or “just anxiety.” Remember: the system’s delays are not a reflection of your parenting or your persistence. The problem lies in stretched services, not in your child or your efforts.
While you can’t speed up the queue, you can create stability, understanding, and connection during the wait.
Why the Waiting Lists Are So Long
High demand: More children are being referred for neurodevelopmental or mental health assessments than ever before, especially post-pandemic. Limited capacity: NHS diagnostic services especially CAMHS are underfunded and understaffed, with many regions operating far above capacity. Uneven access: Waiting times vary widely between local authorities and NHS trusts. In some areas, waits for ADHD or autism assessments exceed two years. Some referrals are rejected due to missing information or “not meeting threshold,” meaning parents have to re-refer and start again. It’s easy to feel powerless, but there are steps you can take to make this time less uncertain.
What You Can Do While You Wait
1. Keep a record
Document your child’s struggles: meltdowns, panic attacks, school avoidance, or sensory overloads. Write down what triggers them and what helps. These notes will be valuable for professionals later and can help schools understand patterns now.
2. Ask the school for support now
You don’t need a diagnosis to receive help. Under the Equality Act 2010, schools must make reasonable adjustments for any child whose difficulties amount to a disability—diagnosis or not. This can include:
A reduced timetable or quiet workspace
Permission to use noise-cancelling headphones or take breaks
Support from a learning mentor or SENCO
If you’re in England, ask whether your child can be placed on SEN Support while you wait for formal assessment. In Wales, this falls under ALN support; in Scotland, Additional Support for Learning (ASL); and in Northern Ireland, SEN support stages.
3. Involve your GP
Update your GP regularly with how your child is coping. They can provide supporting letters, chase referrals, or request urgent reassessment if things worsen. In some cases, they can refer to mental health teams for parallel support, such as counselling or anxiety management.
4. Explore community or online services
Charities such as Mind, YoungMinds, NAS (National Autistic Society), and ADHD UK provide free toolkits, workshops, and helplines. Some local councils also run neurodiversity hubs or parent support groups—a good source of shared experience and practical ideas.
5. Build coping routines at home
Small, consistent routines help reduce uncertainty: Use visual schedules or calm-down spaces.
Keep sensory tools handy (weighted blanket, fidget, dim lighting).
Prioritise rest and downtime—burnout is common in undiagnosed neurodivergent children.
Keep expectations realistic. If school attendance is inconsistent, focus on connection and emotional safety first.
6. Take care of yourself, too
It’s easy to disappear into advocacy and forget your own limits. If you’re running on empty, it’s harder to support your child. Try to build in small acts of recover, a walk, talking with someone who “gets it,” or accessing a carer support group.
Remember: you don’t need to be endlessly patient to be a good parent. You just need to stay present.
What to Do if the Wait Becomes Too Long
If your child’s needs are urgent (e.g., self-harm risk, severe anxiety, or school refusal), contact your GP again to request a priority referral. You can also ask the local Integrated Care Board (ICB) or CAMHS service about interim support. Some areas offer:
Early help teams
School mental health practitioners
Neurodevelopmental waiting list hubs
If your child is unable to attend school because of mental health reasons, remember the Education Act 1996 (s.19): your local authority must provide suitable alternative education after 15 days of absence for health reasons.
When the Diagnosis Finally Comes
A diagnosis doesn’t change who your child is it helps unlock understanding and formal support. It’s okay if you feel relief, sadness, or even anger at lost time.
Take a moment before jumping into new plans. Gather your notes, revisit what’s been working, and build on that. Then, work with your child’s school or health team to update any support plans (EHCP, IDP, or IEP).
Key Resources
Mind: mind.org.uk mental health support for adults and young people
YoungMinds: youngminds.org.uk practical guides for parents and teens
National Autistic Society: autism.org.uk information on diagnosis and rights
ADHD UK: adhduk.co.uk ADHD assessment and advocacy support
Contact: contact.org.uk support for families with disabled children
SENAC (NI), Enquire (Scotland), SNAP Cymru (Wales) region-specific advice on education rights
You don’t have to wait alone.
Every small step, logging behaviour, talking to the school, reaching out for support builds a clearer picture for when the system finally catches up. The wait is heavy, but it’s not wasted time. It’s the space where you and your child learn what truly helps, and that insight will matter more than any report.
Add comment
Comments