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During the wait

While You Wait — What to Do During the Assessment Period

NHS autism assessment waiting lists are often 2+ years. This page covers what you can do right now.

Worth knowing

If your local NHS wait is years rather than months, you may be able to switch to a much shorter route. Compare NHS, Right to Choose and private assessment →

1. Keep an observation diary

Start documenting now. Date, what happened, what triggered it, how long it lasted, what helped. This becomes your evidence for the assessment AND for DLA and EHCP applications.

Download the Autism Observation Tracker

2. Request school support before diagnosis

Schools are required to identify and support children with SEND — a formal diagnosis is not required. Contact the school SENCO and ask for a meeting to discuss your concerns, any changes to classroom support, and documentation of the support they're providing. All of this builds an evidence trail.

3. Request an EHCP assessment before diagnosis

You do not need a diagnosis to request an EHCP assessment. If needs are significant, request one now. The assessment process takes 20 weeks — starting it now means it could complete before or alongside the autism assessment.

Read the EHCP guide

4. Apply for DLA before diagnosis

DLA is based on need, not diagnosis. If your child has significant care or supervision needs now, you can apply now. The diagnostic letter strengthens the application but is not required.

Read the DLA guide

5. Look after yourself

A long wait is genuinely difficult. The uncertainty, the managing without answers, the advocacy work — it accumulates.

Carer burnout

Appointment Preparation Sheet

Helps you prepare for both GP referral and assessment appointments.

3 pages · 5 KB · PDF

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Calm, ordered next steps. Pick the one closest to where you are right now.