BY QUINN CLARK
Sometimes it feels like your physical disability rules your life. It becomes the subject of so many conversations and appointments, you might forget to take care of yourself in other ways. But what about the impact of disability on your mental health?
Dr Janet Hoskin, whose work focuses on disability, difference and Special Educational Needs, is tackling that exact question. Along with Benjamin James, a neuroscience graduate and patient advocate with Duchenne muscular dystrophy (DMD), and Dr Jo Finch, a professor of social work, Dr Hoskin has published a paper which examines the educational and emotional needs of children and young adults with DMD. Dr Hoskin notes that young people with DMD are more likely to have additional needs, including mental health conditions and being neurodivergent (e.g., autism, ADHD, etc.). Current research on DMD and education shows that there is a lack of emphasis on the non-physical needs of children and young people with DMD, including the long-term emotional and psychological impact of living with a life-limiting disability.
To demonstrate where young people may be failed in terms of holistic support, this paper outlines how in England, special educational needs are rigidly divided into difficulties with communication/interaction, cognition, social/emotional/mental health, and physical disability. This means that sometimes children can be labelled with only one of these needs, when in fact, multiple exist. There is also a lack of useful literature around teaching children with DMD who are neurodivergent and/or have additional needs, with most writing focusing on physical symptoms instead of symptoms which are psychological and/or emotional. This paper illustrates why we need to re-examine how we support children and young people with DMD in their entirety, not just with regards to their bodies.
Dr Hoskin and her team gathered information first from a short online questionnaire, and later from focus groups of parents of individuals with DMD, as well as young adults. They interviewed 31 people in total, with 27 parents of children with DMD (between the ages of 3-18), 2 parents of adults with DMD, and 2 young adults with DMD. Although the team wanted to speak with children who have DMD, a lack of funding made this difficult—in the future, they hope to speak to children with DMD directly. The questionnaire showed that many children and young people with DMD have a range of comorbid conditions, including autism, OCD, depression, anxiety, and speech-language delays. It is worth noting that these findings indicate both neurodivergence and mental health conditions.
When explored in conversation, it became clear that young people with DMD do not struggle exclusively with physical symptoms: it was reported that young people often felt isolated, anxious and depressed. Despite this worrying response, there was wide dissatisfaction with local mental health services, EHCPs (Education Health and Care Plans) and general attitudes towards physically disabled young people struggling with their mental health. Responses indicate that current attitudes often deem poor mental health an ‘inevitable’ side effect of living with a physical disability, and therefore not something to be worried about. This is why many respondents talked about how access to good mental health services is crucial for young people with DMD: specifically access to psychological services, as well as clinicians/designated people to talk to who understand mental health difficulties. Likewise, schools should take into account the interests of each person with DMD when formulating support, thereby avoiding the ableist (discrimination to disabled people) tendency of reducing individuals with DMD to their disability alone.
In summary, DMD is not just a physical condition. There are deeply-rooted discriminatory ideas around disability and mental health, and there is a great need for support which accommodates the individual needs of each young person with DMD. Support regarding academics and confidence is essential, as are accessible extracurricular activities which combat isolation and loneliness. This paper illustrates an urgent need for psychological and emotional support for young people with DMD, as well as an increase in the quality of support schools and health services provide. With these changes, young people with DMD will be able to achieve their aspirations and live fuller lives.