A case of diagnostic overshadowing
The Royal College of General Practitioners (RCGP) has published a guide designed to help GPs understand important issues relating to consulting in general practice. This is how it defines ‘diagnostic overshadowing’:
“the concept of diagnostic overshadowing, that is, when a person's presenting symptoms are attributed to the neurodisability rather than another, potentially treatable cause, or vice versa”
In their guidance to council staff, the Local Government Association defines ‘diagnostic overshadowing’ as follows:
“Diagnostic overshadowing occurs when clinicians or caregivers attribute a person's symptoms or behaviours to their autism and / or learning disability diagnosis without considering other potential causes, such as medical conditions, mental health issues, or other neurodevelopmental conditions. This can particularly affect people with a learning disability or autistic people because their behaviour can be misunderstood.”
Repeatedly dismissed by their GP
The parent described taking their child to the GP on numerous occasions and from an early age, but feeling repeatedly dismissed.
“They ate like a horse, but I couldn’t get any weight on them… I went to the doctors so many times and kept being informed that it was due to a growth spurt.”
Their child was only diagnosed when they became critically unwell.
“They weren’t diagnosed with diabetes until they were 17… and only because they collapsed into a coma with kidney failure.”
They believe earlier testing could have prevented serious long-term harm:
“It’s a finger-prick test… something so simple could have saved their life.”
Since diagnosis, their child has experienced serious health complications and has had to give up their career as a senior chef at a fine dining restaurant.
“He’s now in kidney failure, liver failure, and has an enlarged heart.”
The impact of delayed diagnosis
The parent and child both reflected on how earlier diagnosis could have changed their life. They described how symptoms were misunderstood and sometimes attributed to behaviour.
“Their aggressive outbursts could have been high blood sugar… but no one looked at the physical health.”
They have repeatedly said to their parent that they are ‘terrified of dying in his sleep’. This has led to the parent having to stay awake all night to monitor their glucose levels, and as a result having to give up a successful career.
“If I’d been diagnosed, I don’t think my childhood would have been anywhere near as hard.”
Navigating a complex and fragmented system
The parent described how difficult it is to navigate multiple services, especially while managing their own health needs:
“It is hard to navigate when you’re disabled yourself and trying to support the person you’re caring for.”
They highlighted how services feel disconnected:
“It’s like criss-cross… nothing lines up or matches up.”
Diagnostic overshadowing and neurodivergence
The parent believes their child’s neurodivergence contributed to delays in diagnosis:
“As soon as there’s a note saying a child might be neurodivergent, they don’t look at the physical health again.”
Experiences of education and support
The parent described long-term challenges in education, including feeling blamed and not listened to:
“The first thing with neurodivergence is parental blame… you have to jump through so many hoops.”
They fought to ensure their child had the same opportunities as others. They finally accessed a specialist school at the age of 11.
“Their school said they don’t do GCSEs… I said it’s his legal right.”
Their advocacy led to wider change:
“They were the first ever to do GCSEs at that school… and now at least 150 kids have done GCSEs since.”
When they were 6 years old and in a mainstream school, there was a two-day Ofsted inspection, during this time, their child was taken to another school without the mother's knowledge or consent. When she raised it with the head teacher of the school, her child was called a liar. She then called Ofsted to inform them and was told it was too late to change the report. She then raised her concerns with the other school, but was told it was common practice.
Impact on wellbeing
Their child went on to succeed in employment but later had to stop due to ill-health:
“They worked their way up … but had to leave because of diabetes and health issues.”
The experience has affected their confidence and caused them to access counselling services on numerous occasions.
“It’s heartbreaking… these are things people need to hear.”
Barriers to raising concerns
The parent did not formally complain, but wanted change.
“I never made a complaint… but I want it to be known what’s happened.”
They also highlighted difficulties contacting services.
“You fill in forms and never hear anything back… sometimes you just want to talk to a person.”
Impact
The impact of the diagnosis overshadowing has been profound, for the individual and their family.
The delayed diagnosis has resulted in life-changing health complications and significant emotional and financial distress for the young person and their family.
An independent young person has lost confidence, purpose and passion.
What would have helped
The parent identified several areas where improvements could make a difference:
Earlier testing and listening
“We knew something wasn’t right… we just needed someone to listen.”
“I am the expert in my child… and people need to start listening.”
Don’t assume all presentations relate to a person’s neurodivergence
“Don’t assume it’s behaviour… look at the physical health too.”
Joined-up services
“The system is not integrated… it needs to connect.”
Clearer access to support
“People need to know where to go and actually get a response.”
