When autism is diagnosed after something changes

This paper explores what happens when a child is given an autism diagnosis after a noticeable change in their development.

This research is about acquired brain injury (ABI) and does not directly applied to DEE-SWAS. But it raises important questions about what happens when a child changes over time, and how those changes are interpreted. It shows how easily brain-based changes can be misunderstood, and how powerful a diagnosis can be in shaping how a child is seen, supported, and understands themselves.

After something changes in a child’s development, they may show differences in communication, behaviour or social interaction that look similar to autism. This can lead to an autism diagnosis, even when the pathway is uncertain or complex.

The paper includes an example of Zenah, 7, who developed epilepsy, experienced a significant change in her development, and was later given an autism diagnosis. In situations like this, it can be difficult to untangle what is happening. It may not be clear whether autism was already present, whether the change altered development, or whether multiple factors are interacting.

The authors show that an autism diagnosis in this context can be both helpful and unhelpful. For some families, it provides a way to describe a child’s needs and access support. For others, it can lead to misunderstanding, particularly if the earlier change in development is not fully considered.

A key message is that the same behaviours can be understood in very different ways depending on the diagnostic lens that is used. Without careful assessment, there is a risk of getting the explanation wrong, which can lead to support that does not quite fit.

Identity and sense of self

One of the most important points in this paper is about identity. When a child experiences a change in their development, they may feel different, or aware that something has shifted. This can affect their sense of self, as well as how others see them.

If an autism diagnosis is given after this, it becomes part of that story. This is especially important when a diagnosis comes after a change, rather than being part of a child’s early identity.

The authors emphasise that this needs to be handled carefully. It should be worked through with the child and family, so it helps them make sense of what has happened, rather than adding confusion or loss. They also highlight that support should not just focus on skills. It should include the child’s identity, their sense of self, and how they understand who they are now.

“The impact of an ASD diagnosis after ABI will have its own challenges for identity. It needs to be carefully woven into identity work together with the young person and their families to help them construct meaningful and adaptive narrative of their unique situation.”

“Identity rehabilitation is key: Whilst developmental, neuropsychological, and psychiatric assessments are important parts of a formulation, understanding the identity factors for the CYP is also paramount. We find it useful to consider a concept of rehabilitation as needing to look beyond the loss of skills to the young person’s ‘sense of self’ (Perkins, 2020). This involves paying attention to the young person’s identity, and the resilience of their identity.”

Read the full article

• What’s in the diagnosis of ‘ASD’ in the context of Paediatric ABI? https://doi.org/10.4324/9781003228226-20