When I was younger, I collected Brownie badges so that I could wear them proudly on my uniform. Expertly sewn on by my nan, these badges were a symbol of achievement.
In our classrooms, students with learning difficulties collect “badges” of a different sort: they receive diagnoses or “labels” relating to their needs. While there are issues with “labelling” students, those diagnoses can be the starting point to help teachers recognise where students may face barriers to learning. But looking at each “badge” separately is futile; we must recognise how they are connected.
We are now seeing increasing numbers of young people in our schools with more than one diagnosis; they are usually referred to as having “co-occurring conditions”, and clinicians describe this as “comorbidity”. Educators should know these terms and appreciate how a wider understanding of a child’s collective diagnoses can affect learning and, indeed, life chances.
For example, where epilepsy co-occurs with autism, this contributes to a decreased quality of life and increased risk of early death. Yet this is an area sadly lacking in research - medicine, like education, still examines special educational needs and disability (SEND) in terms of silos. This is surprising when we consider that, according to a 2010 study by GN Soke and colleagues, “over 95 per cent of children with autism had at least one co-occurring condition”, and many had more than one. This strongly suggests co-occurrence is the norm, not the exception.
In the case of autism and epilepsy, the charities Autistica, Young Epilepsy and Epilepsy Research UK have recently produced a literature review in the form of a report entitled Autism and Epilepsy: laying out the evidence (2021).
The detail is impressive - one review of 74 studies reporting on 283,549 autistic patients found a 12.1 per cent prevalence of epilepsy in those with autism (Lukmanji et al, 2019). In addition, the 2021 report says that autistic people who have a learning disability or learning difficulties have a greater chance of also having epilepsy, compared with autistic people without learning difficulties.
These co-occurrences can have a significant impact on children’s lives, yet nothing in the system for diagnosis and support feels stitched together in a way that acknowledges this. Parents of children with SEND frequently report clinical departments not speaking to each other, or one diagnosis overshadowing another (for example, children being told: “You’re not depressed, you’re autistic” ). Because of this, they are often left to build the comorbidity picture themselves.
And it’s not just clinical services that many parents tend to be critical of here - it is schools as well. “They don’t understand epilepsy and they definitely don’t understand autism,” I hear parents say.
This is important because there is early emerging evidence that treatment of seizures in some children with medical and genetic conditions associated with autism and epilepsy can lead to improvements in their development.
For teachers, the first step is raising awareness. Do our school leaders know about co-occurrence complexity?
Step two is understanding what this can mean for each individual. I would love to see more teachers who are able to discuss the overlapping nature of multiple diagnoses and recognise the impact and interplay of co-occurring conditions in terms of performance and confidence.
When it comes to the “badges” of comorbidity, teachers need better training so that they can, like my nan, be the ones stitching things together.
Margaret Mulholland is the special educational needs and inclusion specialist at the Association of School and College Leaders
This article originally appeared in the 12 November 2021 issue under the headline “SEND diagnoses need to be stitched together”
