Supporting Behaviour While Waiting for an Autism Assessment

With increasing numbers of children, young people, and adults being referred by their educational setting or service for an autism assessment, or embarking on the self-referral process, waiting lists are getting longer. Lengthy waits for assessment, diagnosis, and support can leave individuals and their families facing a range of issues, from feelings of isolation and confusion, to declining mental wellbeing and school exclusion for some young people in education.

With so much at stake, then, we need to consider how we can best support individuals during this period.

The impact of long autism assessment waiting times

Having to wait months, or even years, for an appointment is not only hugely frustrating, but also has far-reaching – and potentially serious – ramifications for individuals, for their families, and for settings and services.

Impact on individuals

Without a diagnosis or explanation to help them understand themselves better, and to enable them to access the right support, children, young people and adults can experience deep-rooted feelings of isolation and ‘otherness’. They may be aware that they are somehow ‘different’ but might be unable to articulate how or why.

Because supports are often only put in place after a formal diagnosis of autism, individuals can sometimes find themselves ‘judged’ by their behaviour, when, in reality, their needs are not being met. As a result, they may struggle to cope in an environment that does not recognise or cater for their specific and highly individualised needs.

The short-term impacts are undeniable, especially for children and young people who rely on a diagnosis to gain support for special educational needs, but we also need to consider the longer-term consequences, too.

A report published in February 2024 by the University of Liverpool’s Institute of Life Course and Medical Sciences in the UK states that, ‘the failure to provide the right autism support can lead to poor long-term outcomes for autistic children, including an increased prevalence of connected conditions such as mental ill health and a greater risk of school exclusion or not attending school.’

Impact on families

Of course, it’s not only the children, young people, and adults themselves who are adversely affected by long waiting times. Families, too, can find themselves ‘in limbo’, unable to access support services, and struggling to understand and support their loved one’s behaviour.

While waiting for an autism assessment, some parents and carers can feel a sense of blame around their child’s behaviour and may feel as though their concerns are not being taken seriously. They may even begin to question their parenting or care and wonder if they are doing something ‘wrong’.

In some cases, families may see behaviours at home that are not observed by professionals and practitioners in other settings. This could be because the individual has become adept at masking in certain environments, but once at home, they feel secure enough to relax, and may engage in distressed, anxious behaviours. This can be enormously stressful for the whole family and, in some instances, create a barrier between families and schools and other settings because of different perceptions and experiences.