Medical misdiagnosis and mismanagement 

New research shows that autistic people die on average 16 years earlier than the general population and the gap in mortality increases if they also have learning disabilities’ RCGP 2016. 


As a RN influencing health is my life passion and no more so than health promotion.  To influence lifestyle changes and improve the health of a neurotypical nation is near on impossible. Add in sensory difficulties,  cognitive impairment, low financial income and lack of empathy or understanding from professionals and the statement above becomes a worrying reality.

As a parent I am lucky. Dylan is a wholly fit and well child. We only speak to our doctor when we need an official letter writing or a form signing.  He recently had a housing transfer form competed which detailed all GP interactions since birth. There were 4 in total. That’s is. Despite Dylans difficulties he’s a healthy kid!

As happy as I am that he requires so little medical input it has concerned me just how he would cope if he needed invasive or thorough investigation or if he became unwell. 

To target this I bring my medical kit indoors once a week and check all the kids blood pressures, oxygen levels and have a listen to their chests. If Dylan sees others completing tasks he is usually more relaxed with following their lead and his brother and sister are thankfully happy to model this, assist and reassure. 

Dylan has a resting pulse of 115. His blood pressure is often 130/90. His oxygen levels can dip to 95%. This is not normal. Nor sustainable. He finds the examination worrying and he jitters and shakes, visibly uncomfortable with what is happening and nervous about what may follow.  I try my best to reassure him but the fear is too much,  he only truly relaxes once the medical supplies are packed away and the bag is back in the boot of my car.

I have sneaked in when he was asleep and popped my machine on his finger. He has a sleeping pulse of high 70s with 98% oxygen. Much better levels but just goes to show the effects of being examined has on him. How much harder is it going to be for him when feeling unwell, being in a hospital, surrounded by strange machines, strange people, the unknown? 

I can’t directly change the horrifying statistics that report that Dylan could die at least 16 years early but if I can desensitise him to physical examination and teach him how to look after and preserve the health that he does have then it could at least give him a chance? 

2 thoughts on “Medical misdiagnosis and mismanagement 

  1. Hi, I’m both autistic & a mother. 1 That 16 year statistic may (I’m not sure) reflect that a higher proportion of autistic people die young. I’ve heard that in my generation most people with high functioning autism became addicts, prisoners or suicide victims. There may actually just be a critical age to get them past 14 to 24 I’m betting on. 2. Have you tried involving him as a trainee medical tech. My second was so interested in extracting information from medical personnel to melt down (when they would go along. Keep fighting the world is becoming much better for Auties and its mothers like you who are pushing it! 🙂


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