How can we support kids getting Autism or ADHD assessments better?

Neurodevelopmental conditions, including autism and attention deficit hyperactivity disorder (ADHD), affect one in ten people. While the primary focus is often on these diagnoses, worrying research shows people with neurodevelopmental conditions are at a much higher risk of experiencing serious mental health concerns. They may also find it particularly challenging to access mental health support.

For instance, when young autistic people seek help from youth mental health organistion headspace, they often present with severe anxiety and depression. Importantly, these mental health symptoms are one of the most important contributors to their disability in daily life.

We wanted to get a better understanding of how early mental health symptoms emerge. Our new study, published this week, assessed mental health symptoms in young children attending their first neurodevelopmental assessment. This study used the Sydney Child Neurodevelopment Research Registry, an ongoing program focused on child development clinical services.

The results surprised us. About half of the children showed clinical levels of mental health symptoms and were in need of support. This risk increased to nearly 70 percent for children with multiple diagnoses.

So, when children first present with neurodevelopmental concerns, they are also likely to have mental health concerns. More work needs to be done to ensure mental health and neurodevelopment needs are addressed early. Neurodevelopmental assessments may present an opportunity to combine efforts.

In our study, 232 families were asked about their child’s mental health when they first attended a broader neurodevelopmental assessment. The reasons for the higher than average mental health concerns in people with neurodevelopmental conditions are complex.

People with neurodevelopmental conditions can face greater challenges related to social determinants of health, such as unstable housing, financial difficulties, family separation and conflict, social isolation and unemployment.

Other social factors, including stigma, discrimination, peer rejection and exclusion in communities, and social, occupational, and educational support services also play a role.

Some neurodevelopmentally specific factors can also increase risk for mental health concerns. Neurodevelopmental conditions can be associated with difficulties with attention, impulsivity, problem solving and working under stress. There may be differences in sensory processing and concrete and repetitive thinking. Such factors can make emotion regulation more challenging.

Finally, some genes that are linked to conditions such as autism and ADHD are also linked to other mental health conditions.

So, mental health care should be central to health supports for people with neurodevelopmental conditions. Unfortunately, they experience many barriers to accessing care. These include:

• A lack of professional focus and training in mental health that takes neurodiversity into account.

• Incorrect beliefs from professionals that neurodiverse people may be too complex to benefit from standard assessments and supports for mental health. Yet, common tools for depression and anxiety have been shown to work well.

• Limited evidence with few trials of psychological therapies for mental health focused on or including neurodiverse people.

• A complex government structure and hard-to-navigate referral pathways for funding, services and inclusion that separate disability and mental health care.

• Stigma and discrimination where needs are overlooked because of a neurodiversity diagnosis. Social anxiety or depressive symptoms may be too easily attributed to social interaction difficulties or flatness of expression associated with autism. Anxiety and worry may be too easily attributed to executive function and emotional regulation difficulties associated with ADHD.

• Access and cost can make it very hard to see a mental health professional, such as a psychologist. You might be able to get National Disability Insurance Scheme (NDIS) support for needs specific to autism, but mental health is considered separately.

A failure to provide mental health supports when symptoms first develop results in more acute and chronic issues. Individuals present more frequently to acute mental health services, have more emergency service presentations and more inpatient admissions for complex and chronic mental health problems.

Sadly, autistic people also have a tenfold higher risk of suicide, compared to people without neurodevelopmental conditions.

That’s why this study is important. Over half of the children in our study had clinically elevated internalising symptoms, including anxiety, depression, loneliness and withdrawal. This increased to nearly 70% of children if they received more than one diagnosis. These symptoms were more common in girls.

Studies show such problems get more frequent as children age. There is an opportunity to address mental health needs early before these problems become more complex. When children receive their first neurodevelopmental assessment, usually after waiting years, they should have access to the right supports for lifelong development.

The federal government has commissioned a mental health strategy specifically for autism. State-specific supports include New South Wales’ new mental health hubs for people with intellectual disability.

These latest steps are positive. But a fully integrated strategy needs to include all those with neurodevelopmental conditions. Our research shows children with multiple neurodevelopmental conditions are at greatest risk and there’s a need to provide mental health supports to these children as early as possible.

Individuals, families and the community will need access to supports and resources that help them to navigate, understand and be empowered in their mental health care. This will be likely facilitated by technology, personalised care methods and community engagement in co-design of these pathways. The assessment and support process provides a unique opportunity for education and engagement with other service providers and community hubs that can promote lifelong well being.

It will be critical that state and federal governments work in partnership to ensure mental health care can be provided across disability, education and health systems.

This article was originally published in The Conversation as ' Around half of kids getting neurodevelopmental assessment show signs of mental distress. We can support them better.' Professor Adam Guastella is the Michael Crouch Chair in Child and Youth Mental Health at Sydney Children's Hospital at Westmead and the Brain and Mind Centre, University of Sydney, Dr Kelsie Boulton from the Sydney Medical School and Associate Professor Natalie Silove.

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