Frequently Asked Questions: Neurodevelopmental diagnosis referral

Q: Who can refer my child for a neurodevelopmental assessment?

A: Typically, referrals are made by professionals who know your child well, such as school SENCOs, health visitors, or paediatricians. GPs will not generally be the primary referrers.

Q: Why has my child been referred?

A: A referral is usually made when there are concerns about your child’s development, behaviour, or learning that may indicate conditions like autism, ADHD, or other neurodevelopmental disorders.

Q: What happens after the referral is submitted?

A: The referral is triaged by a multi-agency team. If accepted, your child is placed on a waiting list and you’ll receive a letter outlining next steps and available support.

Q: How long will we wait for an assessment?

A: Waiting times can be lengthy - up to 3 years in some cases. Families often report feeling left in limbo during this period, but you can access a Pathway Navigator and support whilst waiting.

Q: What information should be included in the referral pack?

A: Detailed examples of your child’s behaviours, strengths, challenges, and any previous support or interventions. Reports from professionals and school data are essential.

Q: What if my child masks their traits?

A: Explain how masking presents in your child and its impact. This helps assessors understand behaviours that may not be visible in formal settings.

Q: Can I include information from family or friends?

A: Only professional reports or letters from structured groups are accepted. Informal observations from extended family are typically not considered.

Q: Who will assess my child?

A: Assessments may involve paediatricians, psychologists, speech and language therapists, and other specialists depending on the child’s needs.

Q: What does the assessment involve?

A: It may include interviews, observations, questionnaires, and developmental history reviews. The goal is to build a full profile of your child.

Q: Will co-occurring conditions be considered?

A: Ideally yes, but some families report being asked to choose which condition to assess first. This can be frustrating when multiple conditions are suspected.

Q: What support is available while we wait for a diagnosis?

A: You don’t need a diagnosis to access support. Schools, SENDIASS, and local services may offer help based on needs rather than diagnosis.

Q: What happens after a diagnosis is made?

A: Families often receive a letter with links to resources. However, many report a lack of structured post-diagnostic support, including delays in accessing medication or EHCPs.

Q: Can my child get an EHCP without a diagnosis?

A: Yes. Support should be needs-led, and an EHCP can be pursued based on educational and developmental needs.

Q: What if my referral is rejected?

A: You’ll receive guidance on next steps. This may include gathering more information or accessing alternative support services.

Q: How do I challenge the outcome of an assessment or referral?

A: Contact the service directly to discuss concerns. Some areas offer review processes or second opinions.

Q: What if my child isn’t in school?

A: Services can help you explore alternative routes for referral and support, even if your child is not currently in an educational setting.