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Waiting for an autism assessment: what can you do now?

By Mahmoud Ali Khan – Father of an autistic child and developer of the Noah app
Published: · Updated:

Short answer

Waiting times for a specialist autism assessment often run to many months, varying by region. That time is not lost: you can collect everyday observations (they become part of the assessment), start early-intervention support – which in many places does not require a completed diagnosis –, involve daycare or school, and get support for yourself through parent organizations. Important: if your child loses skills they already had, do not wait for the appointment – contact your child’s doctor promptly.

Key points

  • Early-intervention services in many countries are open before a diagnosis is completed – in the US, state early-intervention programs serve children under three based on developmental concerns; in the UK, GPs and health visitors can refer to local child development services.
  • Everyday observations from the waiting period feed directly into the later assessment, which relies heavily on caregiver reports.
  • Parent organizations and support groups carry families through the wait – the exchange with parents who know this exact situation is often the biggest relief.
  • A child losing already-acquired skills (for example words they used reliably) should be seen by a doctor promptly, not at the end of a waiting list.

Why are waiting times so long?

A guideline-based autism assessment is thorough by design: detailed interviews, standardized tools, behavioral observation, and ruling out other causes – done by specialized teams. There are not enough of those teams everywhere, so waiting lists of many months are common in most healthcare systems.

Frustrating as that is: the waiting time says nothing about how seriously your concern is taken. And it can be used.

Sources for this section: National Institute for Health and Care Excellence (NICE) · NHS (UK National Health Service)

Collect observations while everyday life is fresh

Everything you document in the months before the appointment makes the assessment better grounded – because it relies heavily on what caregivers report about everyday life. Capture concrete situations: contact behavior, communication, routines, reactions to sensory input, sleep, transitions. Short, dated, regular; the good moments included.

How that looks in practice is covered in detail in our guide on documenting when you suspect autism.

Sources for this section: National Institute for Health and Care Excellence (NICE)

Support that does not wait for a diagnosis

The most important point in this guide: support does not have to wait for the diagnosis. In the United States, every state runs an early-intervention program for children under three; eligibility is based on developmental evaluation, and a completed autism diagnosis is not required to start. In the UK, your GP or health visitor can refer your child to local child development or speech and language services while the assessment is pending. Ask your child’s doctor what runs in parallel where you live.

Depending on your child’s needs, individual therapies – speech therapy, occupational therapy – can often start in the meantime as well, addressing the areas that need support right now.

Sources for this section: HealthyChildren.org, American Academy of Pediatrics · NHS (UK National Health Service)

Involve daycare, school, and the people around you

Teachers and caregivers see your child many hours a week in a group setting – an environment you cannot observe at home. Ask for their impressions and, if possible, a short written note for the assessment. Also discuss what support the setting can offer right away: calmer transitions, predictable routines, and further accommodations as things develop.

Grandparents and other close people are good observers too – sometimes they notice different things than you do, and that is valuable information as well.

Look after yourself

Months of waiting with an open question hanging over the family wear you down. You do not have to carry this alone: autism parent organizations in most countries run support groups and helplines, and talking with parents who know this exact waiting period often relieves more than any brochure. Your child’s doctor can point you to local family counseling services as well.

Sources for this section: NHS (UK National Health Service)

When you should not just wait

There are situations in which you should contact your child’s doctor promptly instead of waiting for the assessment: when your child loses skills they already had – for example, stops using words they used reliably –, when they hurt themselves, or when the situation at home escalates beyond what you can handle. Those developments belong in medical hands immediately, independent of any waiting list.

And if the wait stretches unexpectedly: ask the clinic about cancellation lists for short-notice appointments, and keep your child’s doctor informed – sometimes there are alternative services in the region.

Sources for this section: National Institute for Health and Care Excellence (NICE)

Sources

These sources support the statements in this guide. All links were last checked on the update date shown above.

Keep reading

This guide provides general information and does not replace medical advice, diagnostics, or therapy. If you have questions about your child’s development, talk to your pediatrician.