Waiting for An Autism Assessment

Expert / 14 April, 2025 / Ellie Thompson

If you’re a parent waiting for your child’s autism assessment, you’re not alone; waiting lists are getting longer across the UK, and sometimes the waiting feels impossibly hard. For many families, the period between raising concerns and receiving a formal diagnosis can stretch over many months, sometimes even years. This uncertainty can be emotionally exhausting. It’s a time when you might feel stuck in limbo, watching your child struggle but unsure of how to help, or feeling like you need “permission” from a diagnosis to start making changes.

The good news is that there are meaningful things you can do now to support your child and yourself while you wait. Nicola Lathey, expert children’s speech and language therapist and founder of Waiting Well, a new initiative by The Owl Centre Charity, shares her top tips to help families navigate this difficult period.

Start Noticing and Documenting Patterns

One of the most valuable things you can do while you’re waiting for an autism assessment is to observe and record your child’s behaviours, reactions, and unique ways of interacting with the world. This might include sensory preferences (e.g. sensitivity to noise, textures, or bright lights), how they manage transitions, how they communicate, and how they interact socially.

Don’t worry about formal language, your own words and specific examples are incredibly useful. These notes not only help paint a clearer picture for professionals during the assessment process, but they can also help you start to identify strategies that support your child’s strengths and challenges.

Introduce Supportive Strategies Now

It’s a common misconception that you need to wait for a diagnosis before offering support. But if something helps your child, it helps, regardless of whether there’s a label yet.

For example, if your child finds it hard to transition between activities, try introducing a visual timetable or using countdown timers. If they become overstimulated in noisy environments, explore the use of noise-cancelling headphones or create a quiet sensory corner at home. These are small, proactive steps that can ease everyday challenges and support emotional regulation.

Nicola recommends visiting www.waitingwell.co.uk, a website designed specifically for families in this waiting period, full of practical tools and strategies to try right now.

Seek Out Support Networks

Feeling isolated is a common experience for parents during this time. You may feel like no one quite understands what you’re going through, especially if friends and family are unfamiliar with neurodivergence. But there are communities out there who do get it.

Joining online forums, Facebook groups, or local support networks for parents of neurodivergent children can offer comfort, advice, and validation. You’ll be reminded that you’re not alone, and you might discover resources or tips that you hadn’t considered.

Advocate for Their Needs

A diagnosis can open doors to formal support, but your child doesn’t need a label to deserve understanding and accommodations, especially in school or community settings.

You have every right to speak with teachers or club leaders about how your child experiences the world and what helps them thrive. This might include movement breaks, flexible seating, extra time for certain tasks, or clear routines. Your insights about what works at home will be welcomed by your child’s team.

Be Kind to Yourself

Perhaps the most overlooked piece of advice is this: you matter too. Waiting for answers, managing daily life, and worrying about what comes next can be deeply draining. You might feel guilt, anxiety, or frustration, and all of that is okay.

Give yourself grace. Make space for rest where you can, lean on friends or family, and consider talking to a counsellor or therapist if the emotional toll becomes too much. Self-care doesn’t need to be elaborate; even small acts like a quiet cup of tea, a short walk, or journaling can help recharge your energy.

Above all, remember: your advocacy, your effort, and your love are already making a difference. A diagnosis can provide clarity and access to resources, but it doesn’t define your child, or your worth as a parent.

Final Thought: You’re Doing Better Than You Think

The waiting period for an autism or ADHD assessment is undeniably tough. But with the right mindset, practical tools, and supportive connections, you can navigate this time in a way that supports your child’s wellbeing, and your own. Trust your instincts, celebrate small wins, and know that every step you take during this time is laying a foundation for the support, understanding, and future your child deserves.

Earlier this month, The Owl Centre Charity launched Waiting Well – a new first-of-its kind national online hub launches designed specifically for individuals and families who are on a waiting list (or have loved ones on the list) for a neurodiversity assessment.

It provides free evidence-based practical and addressing the most common day-to-day challenges faced by individuals with neurodiverse needs, and has been developed in collaboration with neurodivergent individuals who are currently on an assessment waiting list, specialists from Northumbria University who are researching the impact of mental health of those on a waiting list, as well as healthcare professionals and advocacy groups.

For more resources, tips, and support, visit www.waitingwell.co.uk.

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