What to Do While Waiting for an Autism Assessment in the UK
You have made the referral, or you are on the NHS waiting list, and now you are facing a wait that could stretch into months or years. The period between referral and assessment can feel like a frustrating limbo — but it does not have to be. There is a great deal that parents can do during this time to support their child, build a strong evidence base for the assessment, and access services that do not require a diagnosis to unlock.
Keep a detailed observation diary
One of the most useful things you can do right now is start writing things down. A regular diary of what you observe — at home, at school, and in social situations — serves two purposes. First, it helps you identify patterns that you might otherwise miss. Second, it provides the clinician with detailed, concrete evidence when the assessment eventually takes place.
Try to record specific examples rather than general statements. Instead of “she finds social situations hard”, write “at her friend’s birthday party on Saturday, she spent most of the time sitting near the door, barely spoke, and then became very distressed in the car on the way home.” Specificity is much more useful to an assessing clinician than general summaries.
Note things like:
- Meltdowns or shutdowns — what happened beforehand, how long they lasted, and how your child recovered
- Sensory responses — to noise, light, textures, crowds, or unexpected touch
- Communication patterns — how your child communicates with you versus strangers, in familiar versus unfamiliar settings
- Routines — what happens when routines are disrupted
- Social interactions — what goes well, what causes difficulty, and what your child says about friendships
- Sleep patterns, eating, and physical health
Talk to your child’s school
A formal diagnosis is not required for a child to receive SEND support at school. Under the Children and Families Act 2014, schools have a duty to identify children with additional needs and put appropriate support in place at the SEN Support stage — without waiting for a diagnosis.
Ask to meet the school’s SENCO and explain that your child is awaiting an autism assessment. Request that the school:
- Puts in place reasonable adjustments (such as a quiet space, advance notice of transitions, or written instructions rather than verbal ones)
- Completes observations of their own to contribute to the assessment process
- Considers referring to an educational psychologist or specialist teacher for further assessment of learning needs
If the school tells you a diagnosis is required before they can do anything, this is incorrect. Ask to speak to the SENCO again and, if needed, contact your local SENDIASS for support.
Contact SENDIASS for free advice
SENDIASS (SEND Information, Advice and Support Services) are free, impartial, statutory services available in every local authority area in England. They can:
- Advise you on your rights under the Children and Families Act and the SEND Code of Practice
- Support you in conversations with school and the local authority
- Help you request an Education, Health and Care (EHC) needs assessment — which you can do whilst still awaiting an autism assessment
- Assist with mediation or appeals if you are in dispute with a school or local authority
Equivalent services exist in Scotland (IASS), Wales (SNAP Cymru and IPSEA Cymru), and Northern Ireland (SENSSA). Contact details are available through your local council or NHS trust website.
Consider requesting an EHC needs assessment
You do not need a diagnosis to request an Education, Health and Care (EHC) needs assessment from your local authority. If your child has significant needs that are not being met by current school provision, you can make this request at any time — and the local authority must respond within a specific legal timeframe.
The assessment process considers your child’s educational, health, and care needs holistically. An autism assessment that is underway or pending is relevant information to include in your request, but it is not a prerequisite.
Look into private therapies
Whilst you are waiting for a diagnosis, many families find that accessing specific therapies makes a significant difference to their child’s day-to-day life. Common therapies that do not require a prior diagnosis include:
- Occupational therapy (OT) — for sensory processing difficulties, motor coordination, and daily living skills. A private OT can assess and provide a report that supports the autism assessment process.
- Speech and language therapy (SLT) — for communication difficulties, speech development, and social communication.
- Play therapy or CBT — for anxiety, emotional regulation, and processing difficulties at school or home.
The SEND List directory includes private specialists across the UK — browse by city to find therapists near you.
Take care of yourself too
Waiting is hard. The combination of worry about your child, battles with professionals, and the uncertainty of the assessment outcome is genuinely exhausting. Please look after yourself during this period.
Parent support groups — both in person and online — can be a lifeline. Organisations such as the National Autistic Society, Ambitious about Autism, and many local parent groups offer community, shared experience, and practical advice. Speaking to other parents who have been through the process can make an enormous difference.
What if I cannot wait? Consider a private assessment
If the wait is simply too long — or if you need a report urgently for school or an EHCP application — a private autism assessment may be worth considering. Read our guides on how much a private autism assessment costs and what the assessment process involves.
If you are in England, it is also worth checking whether you can use the NHS Right to Choose scheme to reduce your wait without paying privately.
Find support near you
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