What to do while waiting for your child's autism or ADHD assessment

How long the wait can be

In England, the NICE guideline on autism in under 19s (CG128) says the autism diagnostic assessment should start within three months of the referral to the autism team. The NHS is more cautious about real waits: if a referral is accepted, it can take a few months or longer to get an autism assessment, and for ADHD, your child may have to wait several months or years. Leicestershire Partnership NHS Trust tells families simply that wait times for autism assessments vary and can be long.

In the US, the American Academy of Pediatrics (AAP) acknowledges on HealthyChildren.org that families may have to wait for the evaluation appointment, and lists steps that can support a child even before a diagnostic evaluation. Waits differ by clinic and region, so the most useful number is the one your own service gives you.

If you are in England, you have some choice. The NHS says you can choose which NHS service does the assessment and may be able to find a clinic with shorter waiting times, which is called Right to Choose. For ADHD, the NHS says you may be able to find a shorter waiting list through your GP using the same scheme.

Support that does not have to wait in the US

The CDC's Learn the Signs. Act Early. program tells parents that at the same time as asking the doctor for a referral to a specialist, they can call their state's public early childhood system to request a free evaluation to find out whether their child qualifies for intervention services. In the CDC's words, "You do not need to wait for a doctor's referral or a medical diagnosis to make this call." If your child is younger than 3, you contact your local early intervention system; if your child is 3 or older, the CDC says to call any local public elementary school. This is sometimes called a Child Find evaluation.

The AAP lists similar steps for families waiting for an autism evaluation. Children under 3 should be referred to the state's Early Intervention program. Children 3 or older can be evaluated, and likely enrolled, in the local school district's special education services, and children between 3 and 5 may be eligible for a developmental preschool program. Your pediatrician may prescribe medically necessary therapy, such as speech therapy for communication skills or occupational therapy for self-help skills. The AAP also suggests asking whether your child's hearing has been screened.

Support that does not have to wait in the UK

The NHS says a GP or education professional can tell you what support is available while you are waiting for an autism assessment, or if you cannot get a referral. For ADHD it is direct: while waiting for a referral or assessment, the child should continue to get support at home and in school. The NHS suggests starting with your child's teacher, who will usually involve the school's special educational needs co-ordinator (SENCO), and says your local council can advise and tell you whether there is a family hub nearby.

NHS services repeat the same principle. Chelsea and Westminster Hospital NHS Foundation Trust tells families that support should be based on what a child needs help with in daily life rather than on a diagnosis. Leicestershire Partnership NHS Trust says a child who struggles with everyday activities or learning should be given support at home and school whether or not they have an autism diagnosis.

Keep your place on the list

Waiting lists run on contact details. Chelsea and Westminster's child development service asks families to check it has the right phone number, email, home address and GP, and to say if any of them change. It also warns that if the service cannot reach you, your child may be discharged and a new referral will be required. Answer calls and letters from the service, even when they arrive months after the referral.

The same service asks families to return questionnaires as soon as possible and to tell it about changes such as a move to a new school. If you have concerns about your child while on its waiting list, it directs you to your GP first. If you are struggling to get a referral at all, the NHS says you can ask to speak to someone else, such as another GP, for a second opinion.

Use the time to write things down

The wait is also time to build the record you will be asked about. The CDC's Act Early page offers a recordkeeping worksheet to help parents keep track of their notes. NICE says every autism assessment should include detailed questions about parents' concerns and the child's experiences of home life, education and social care, and Leicestershire Partnership NHS Trust suggests writing your concerns down and listing developmental history, such as when your child first walked or talked.

Short, dated notes written on the day work better than a long summary written the week before. Note what happened, where, and who was there, in plain words, and include what went well. The AAP says it helps to have grandparents, teachers, neighbors and others who spend time with your child share what they see, so ask them early rather than the night before.

Ordinary life goes on during the wait as well. The AAP's list includes continuing daily play that your child enjoys, following their lead, considering a preschool, daycare or playgroup where they can be around children their age, and learning about autism and child development from trusted sources. It notes that even a few hours a week of time with other children can have positive benefits.

Common mistakes while waiting

Waiting for the diagnosis before asking for help. The CDC says a diagnosis is not needed to request an early intervention evaluation in the US, and NHS guidance says support at home and school should not depend on one.

Losing contact with the service. A changed phone number or an unanswered letter can cost your child their place, as Chelsea and Westminster warns. Update your details whenever they change.

Counting on memory. By the time the appointment arrives, examples from the first months are hard to date. A note the same day takes a minute. EvalReady is one way to keep that record on your phone: each note is dated and filed under an everyday category with any photo or clip attached, and once the appointment is booked you can add the date and bind the notes into one PDF for the clinic.

This guide summarizes public information from the CDC, the AAP, the NHS and NICE. It is not medical advice, and services and waiting times differ by area. Your child's doctor, school or assessment service can tell you what applies to your family.

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