Does an autism diagnosis help children and young people? Insights from doctors and lived experience

This blog by Xingna Zhang, an ADR UK Research Fellow using the Education and Child Health Insights from Linked Data (ECHILD) dataset, explores whether an autism diagnosis helps children and young people access the support they need, and what she found out by consulting doctors and people with lived experience directly.

Recent evidence has shown a steady increase in the rate of diagnosed autism among children and young people in the UK. This is happening against a backdrop of long waiting times to receive a clinical diagnosis in public health services, suggesting the real rate of autism may be even higher.

I am a researcher interested in the experiences of autistic children and young people as they move through health and education systems, and how these systems can be improved. It seemed clear to me that a diagnosis would help them get the support they need—such as special educational needs (SEN) support, education, health, and care plans (EHCPs) at school, and autism-informed services in hospitals.

But in research, it’s important to look at the evidence. So I asked: what do doctors and children and young people themselves say?

What did doctors tell me?

Clinicians at a local NHS children’s hospital challenged my views that an autism diagnosis is always beneficial for the children affected. They said many children get SEN support or an EHCP at school without a diagnosis, and almost anyone referred to them for an autism assessment would eventually receive one. But hospital-based interventions and services can’t “cure” autism in children. So the clinical diagnosis may not always be beneficial or necessary, if schools and hospitals can provide timely, appropriate support to children who need it.

They also suggested that NHS resources currently used for autism assessments could be redirected to other areas, and that hospitals would not need to deal with such long waiting lists for diagnosis. That may be a win-win situation for everyone.

What did children and young people tell me?

With this challenge in mind, I invited 16 children and young people from the Young Person Advisory Group (YPAG) to share their views with me in an online meeting. Five of them have diagnosed autism, six have attention deficit/hyperactivity disorder (ADHD), and some have both. Almost all the rest have at least one family member, friend, classmate or relative who is autistic.

Those with an autism diagnosis told me their diagnoses had been very helpful. However, many had faced long waits—one person, for example, waited four years before receiving their diagnosis.

Some did receive SEN support or EHCP at school before their diagnosis. But having a clinical diagnosis helped many access disability allowance, which they described as “super helpful”. Many of them spoke about the struggles and confusions they had experienced before the diagnosis, and how they have learned to adapt to their surroundings since then. Many preferred to receive a diagnosis so they could understand what was really going on in their lives. But some had mixed feelings and thought their diagnosis had made life harder because it made them stand out.

To better understand the support that autistic children and young people need in schools and health services, I asked five child-friendly questions to the whole group. I received a variety of answers, but observed some common themes:

• First, the children and young people agreed that clear instructions and sensory rooms would be most helpful to autistic children at both schools and hospitals.
• Second, no one liked being “singled out”; everyone simply wanted to be treated with consideration and respect.
• Third, it’s crucial to have supportive people “on site” (i.e. at schools), who would be able to identify potential symptoms and needs early.
• Fourth, training on autism should be mandatory in every hospital.
• Finally, every individual had different experiences, and I (the researcher) should always try to speak directly with autistic children and young people wherever possible.

What’s my view now?

I then spoke with my colleagues—many of them NHS doctors, though not the same clinicians I had consulted earlier—about what I had learned from those conversations. Some explained that Child and Adolescent Mental Health Services (CAMHS) have recently stopped dealing with neurodevelopmental conditions because of pressures on staff and limited resources. At the same time, CAMHS have become more selective about accepting referrals for autism assessments. These assessments are usually carried out by several agencies working together, often starting within schools before NHS specialist services become involved.

The lesson I have learned is that it is only through dialogue with those who are affected that we can hope to make sense of the challenges people face. This is where academic research can not only thrive, but also help to change people's lives for better.

Read more about Xingna's project.