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PDA and diabetes
  • 07162017
    Posts: 50
    Does anyone know of any children who have both PDA and diabetes please? The demand avoidance is seriously affecting the health of our son who won't comply with his diabetes needs.
  • Oh dear, that is a very difficult situation. As with any health condition, having PDA will potentially cause great difficulties in compliance with the necessary health steps. There have been cases of anorexia with PDA due to controlling food intake and what type of food, but I haven't heard of specific to diabetes. Is the GP aware of the refusals?
  • This is vaguely related but not specific enough:

    "Fears and Health Needs of Patients with Diabetes: A Qualitative Research in Rural Population"
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500317/

    I'm surprised there isn't more literature about it because there have been articles about the link between ASD and diabetes and even in typical ASD rigidity or phobias could cause problems:

    "Type 1 Diabetes and Autism: Is there a link?"
    http://care.diabetesjournals.org/content/29/2/484

    "Autism may share risk factors with diabetes"
    https://spectrumnews.org/news/autism-may-share-risk-factors-with-diabetes/

    There is a thread here on the NAS forum which might be useful, although not PDA-specific (I didn't read through to see if any of the respondents have a child with PDA). There is someone posting on that thread who said they have set up a support group so you might want to investigate that as there might be other PDA parents who have found successful strategies.

    http://community.autism.org.uk/f/health-and-wellbeing/131/diabetes-type-1

    One thing I would say, is that he needs to obviously feel like it's not a demand to take medication or injections. Have you tried using the humorous approach? If he sees you are anxious about it, or he feels like he's being pushed, you probably know that's the worst way to handle it. He needs to feel in control.
  • Holly59
    Posts: 2,576

    07162017 said:

    Does anyone know of any children who have both PDA and diabetes please? The demand avoidance is seriously affecting the health of our son who won't comply with his diabetes needs.



    I am so sorry to hear of your issues . I had to give myself heparin injections for six weeks and I know how diificult that was .

    http://dwed.org.uk/about-us-faq/

    It’s not quite what you are after but they might have suggestions to help .

    Pat xx
  • 07162017
    Posts: 50
    Thank you for your help.The GP and hospital are very worried about him. He knows what he should do but won't. I have asked the doctors to ask their colleagues if they have experienced PDA and type 1 diabetes together and what worked if anything.
  • dirtmother
    Posts: 889
    I reckon you might pick up some useful tips and perspectives from Diabetes UK, particularly their stuff on and for teenagers and their parents...obviously you've got the same but more severe control issues with sensory and other knobs on.

    I found them good when I contacted them about a relative who seemed to have been given some rather surprising advice locally.

  • Holly59
    Posts: 2,576

    07162017 said:

    Thank you for your help.The GP and hospital are very worried about him. He knows what he should do but won't. I have asked the doctors to ask their colleagues if they have experienced PDA and type 1 diabetes together and what worked if anything.



    Hi,
    There has been a case recently where an anorexic child was involved . They were treating her initially as an anorexic rather than treating the PDA . Eventually they did listen , PDA first .

    Treat the PDA , put him in charge , then tackle the diabetes . My husband was diabetic and a large number of my relatives so my heart goes out to you .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,188
    How old is your son? His age might help on what level of tactics you might need to try.
  • 07162017
    Posts: 50
    He's 14
  • PDA_ASD_Parent
    Posts: 4,188
    OK at 14, especially as a PDAer he will have pretty honed skills of manipulation and avoidance so is far harder to "trick" and convince in ways that you would use for a younger child. Have you tried reverse psychology? Humour? Providing factual evidence from a good website about the health problems from not managing his condition (maybe in an interesting biology way)?
  • 07162017
    Posts: 50
    He says he's not bothered about his health and can quote all the likely outcomes. I think he cannot be bothered with the practicalities of it and cannot make the connection between feeling unwell and his avoidant behaviour causing him to feel unwell.
  • PDA_ASD_Parent
    Posts: 4,188
    Sometimes PECS social stories can drive the message home, even in a "high-functioning" older autistic. The autistic brain often processes visual information far better than verbal.
  • 07162017
    Posts: 50
    What are PECS?
  • RhanHRhanH
    Posts: 904
    Picture exchange communication system - helps communication via pictures: https://www.nationalautismresources.com/the-picture-exchange-communication-system-pecs/

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