Today we’re going to talk about the effect of diagnostic overshadowing in one little girl’s life. But first, what is it? Diagnostic overshadowing is when ‘symptoms of physical ill health are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person’s learning disabilities’ (Emerson and Baines, 2010). It can cause anything from a slight delay in diagnosis to an increased risk of death because someone tells you, for example, ‘it is normal for down’s syndrome children to have low oxygen/not pass stool for days…’.
“…normal for down’s syndrome”
We feel that this phenomenon is a critical piece in the puzzle when we look at the reasons for the of lack research and the poorer health outcomes in our community. Despite the certainty touted on the DS awareness memes this month, we can only draw one conclusion when we read each ‘fact’ : this is what we know now. Take for example the lifespan meme, why has that increased? Basic medical care, heart repair operations have been made available to those who need it. Here we are in 2020, much is still unknown about Down’s syndrome (and its associated conditions) and therefore the possible best supportive therapies. Has the book closed on Down’s syndrome, marking a ‘full stop’ on progress and advances to help our loved ones? No, not if we are looking, learning and investigating the possibilities through medical research.
Hazel is nine years old and has the biggest smile you could ever see. Often accompanied by the heartiest belly laugh imaginable. Where ever you are in the house, whatever you are doing, you stop and go see what’s made her laugh. Often you have no idea, but you join in anyway – it’s contagious. Hazel is a joy to be around!
Hazel also has Down’s syndrome. She has Autism. She also has a feeding tube. She’s still learning to walk and it’s hard for her. Oh, and she doesn’t talk; at least not with words.
When Hazel was born, I remember hoping and praying that she had the ‘not too bad’ version of the condition. The one that we often hear talked about in the DS community. The one that said she would walk, talk, go to mainstream school, get a job, get a flat, get married and live happily ever after – the “what’s so Down about that” kind of narrative. That version.
It’s that version – or rather the expectation that she should be that version that I think may have held Hazel back in some ways. It’s certainly held me as her parent back from helping her overcome her challenges. I’ve often been told by our own community and some in the medical profession who support us that ‘she’s just delayed’. She’ll get there. Concerns I’ve had about what appear to be more severe ‘delays’ in Hazel than in most children with Down’s syndrome have, at times, been minimised. I’ve been handed the overly anxious parent badge on more times than I care to remember. And, when that badge is given by a medical professional it’s often accompanied with a shrug of the shoulders or a sighed “Yes well that’s Down’s syndrome or that’s the Autism”. Conversation closed. No further explanation or exploration needed. See you in a years’ time.
Hazel is the happiest nine-year-old I know. She accepts the world around her and the people in it as they are. She makes no demands on them other than to be loved. For me, loving Hazel means caring for her and being her voice. I need the help and determination of others to do this; to be willing to explore her life, her experience, her needs in depth. I need, she needs the medical profession to go the extra mile to find out how best to help her. She needs to be seen as Hazel, a person with Down’s syndrome but a person first. Yes, Down’s syndrome is in every cell, every fibre of her being, of Hazel. But it should not automatically disqualify her from the help she may need throughout her life. It should not be used as an end to a discussion on her needs but a beginning.
Why are her ankles so badly deformed; meaning that she will never be able to walk without orthotic support? Is it ‘because she has Down’s syndrome’ or, more recently, ‘because she has Autism’? And, if it is, then why is no one doing anything about trying to help find the causes of this and treat it at an earlier stage? The DS community is badly let down by Government on this as they continue to pass over them as being worthy of any kind of research into improving their lives. Or perhaps they are so deformed because we didn’t know there was a problem. We assumed she was just ‘delayed’ and had no idea that our attempts to help her to learn to walk were actually doing more harm than good. And, in what other aspects of her physical and emotional development, is more harm being unnecessarily done due to the fact we have labelled those areas ‘delayed’ without fully understanding why?
A delay has a cause that should always be investigated. When Hazel’s older sister experienced delays in learning to walk investigations were made immediately and regular treatment ensued. The delay was enough to warrant a concern. A question mark. A plan was put in place. She got the help she needed.
Yet with Hazel it seems as if having Down’s syndrome is a full stop. A reason to end the conversation and offer no further explanation. And, for too long, our community has been guilty, myself included, of accepting this.
In Hazel’s case diagnostic overshadowing is what #HoldsMeBack and that’s why I’m getting behind the DSRF’s campaign this month to raise awareness and challenge thinking in this area. It’s too critical to the well being of all people with Down’s syndrome to ignore.
“It’s too critical to the well being of all people with Down’s syndrome to ignore.”
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Our deep thanks to Alison and Hazel Morley for sharing their story. You can follow them here.
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1 Early death and causes of death of people with Down syndrome: A systematic review Lisa O’Leary et al. 2018 https://doi.org/10.1111/jar.12446