When your child doesn't get a diagnosis
You waited months for the assessment, and the answer was 'no diagnosis'. That can feel like being sent back to the start. It can feel as if the struggles you see every day have been ruled not to count. They count. A diagnosis is a yes-or-no call made on one afternoon's evidence. It is not a verdict on your child's needs. And support in the UK doesn't need one.
What to do, step by step
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Read what the report actually says
Even without a diagnosis, the report should say what the team found. It should cover your child's strengths and the areas where they need help. Those findings still count, even though the bar for a diagnosis wasn't met. They're written evidence of need from professionals. You can use them with school and anyone else who supports your child.
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Ask the team to explain the decision
Ask which of the criteria for a diagnosis weren't met, and why. Ask what they'd suggest instead, and whether it makes sense to assess again later. The NHS says that for some children the signs just aren't clear yet. You may be asked to wait until your child is older to be assessed again. Get the answers in writing if you can.
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Keep school support going
SEN support SEN support The everyday help a school in England puts in place for a child with special educational needs. It is based on what your child needs, not on having a diagnosis. Read the full definition of SEN support at school is based on your child's needs, and those haven't changed. Take what the report found to the SENCO SENCO The teacher in your child's school who leads support for children with special educational needs. They are usually the quickest person for a parent to reach. A clinician has not checked this definition yet. Read the full definition of SENCO . Ask for the support plan to be kept, or made stronger, to match it. If your child's needs are large, you can still ask your local authority for an EHC needs assessment. You do not need a diagnosis.
SEN support at school (GOV.UK) Extra SEN help and EHC plans (GOV.UK)
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If you disagree, you have options
You can ask the GP GP Your family doctor. For many families the GP is the first person to talk to, and the person who refers your child on to a specialist. Read the full definition of GP or the assessment team to refer your child to another team for a second opinion second opinion Asking to have your child seen by a different team when you do not agree with the outcome of an assessment. You can ask, and asking is normal. Read the full definition of second opinion . Some families pay for an assessment outside the NHS. If you're thinking about that, first check how your NHS services and school would use a private report. Not all of them accept one. And if you feel the process itself went wrong, PALS at the NHS trust can help you raise it.
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Keep your records alive
Needs change as children grow, and a 'no' now doesn't close the door. New evidence can support a new referral referral When a professional passes your child on to a specialist team for assessment or treatment. A GP, school or health visitor can usually make one. Read the full definition of referral later. Keep dating your notes, keep copies of school reviews, and keep the assessment report Assessment report The written report you get at the end of an assessment. You are entitled to your own copy, and you can ask for factual mistakes to be put right. A clinician has not checked this definition yet. Read the full definition of Assessment report with them. Then the next talk starts further on than the last one did.
Worth gathering
- The assessment report and the written reasons given
- Dated notes of anything new or changing since the assessment
- School reviews, reports and SEN support plans
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Keep supporting the needs you can see
You didn't imagine any of it. The day-to-day work of supporting your child never depended on the label. What helps is aimed at needs, not at a diagnosis. The place to start is knowing just where your child struggles and where they shine. That's true with or without a diagnosis.
Common questions
Can my child be referred again?
Yes. If things stay hard, or you find new evidence, ask your GP or school about a new referral. Assessment teams expect some children to come back as they get older and the picture gets clearer.
Was I wrong to push for an assessment?
No. 'Below the diagnostic threshold' does not mean 'fine'. You saw something real. The assessment report will very likely back up parts of it. And acting early is just what you're meant to do.
Should we pay for a private assessment?
Some families do. Before you spend the money, ask your GP and your child's school if a private diagnosis would be accepted where you live. NHS services and local authorities don't all treat it the same way.
Who can help us challenge decisions about school support?
IPSEA and your local SENDIASS both give free advice on SEN support, EHC needs assessments and appeals. Search your council's name plus 'SENDIASS' to find your local service.
Where next on the journey
Your child doesn't need a diagnosis to get support
Start with a profile of your child. See what we find. Go from there.
Sources
- How to get an autism assessment (if you do not agree with the result) , NHS
- Children with special educational needs and disabilities (SEND): SEN support , GOV.UK
- Children with special educational needs and disabilities (SEND): Extra help , GOV.UK
- What is PALS (Patient Advice and Liaison Service)? , NHS