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Autonomic dysfunction in autism

Deedee

Anyone elses young people out there have autonomic dysfunction? My son was diagnosed with orthostatic hypotension/vasovagal syncope fairly recently. Has blood pressure drops on standing and near fainting episodes for anything that provokes fight or flight response. Pots and syncope service says it is common in autism. He's been this way forever but was difficult to tell with meltdowns etc. School treat it like it was a behaviour problem when there was refusals in PE or lining up. He is 19 now, i think it would have been easier knowing and think they would have been kinder. Quite upsetting looking back at times he's struggled and been punished for it. How many out there with same difficulties and put down to autistic behaviour?? It's a scary thought, i thought i was quite knowledgeable about anything autism related but had never heard of it. Had told consultants about issues with lining up etc and not picked up by them either when all the signs were there really. Would love to hear anyone elses experience/thoughts.

  • in reply to Deedee
    Deedee said:
    Don't think there is enough awareness of the link to autism though

    From what I have read on the subject there is not much evidence of the link - yet. It doesn't mean it isn't there, just that the studies cannot conclusively establish the link from what has been seen so far, probably because there are few cases to study.

    It is probably safer to consider it as a comorbidity (ie it can exist at the same time) with autism but without thinking it is linked.

    If you try to push the assumption of a link to medical professionals then it may be counterproductive as they may think you are making stuff up.

    Hopefully medical science can sort this out in due course and let us know if there really is a link.

  • in reply to Deedee

    there's a medical expression about when making a differential diagnosis - If you're in the UK and you see a four legged animal with hoofs and a mane it's most likely to be a horse rather than a zebra...  I regret that stigmatism  extends into even well educated and professional thinking.  The thing observed most is the agitation.  Despite the most obvious thing being the loss of consciousness.  Even having written this I am thinking that there is a connection somewhere along the line as biases in thinking get pretty entrenched...  Having a most accurate diagnosis means that getting the most useful management strategy is more likely and all the best for you and yours to getting this. :-)

  • Thanks for the reply. There is so many triggers and just intolerant to standing. They've given advice with the tensing etc keeping hydrated, salts etc. Nothing stops it really, not completely, just how his nervous system responds. The biggest help really is knowledge of it. At least we know what is happening and how to deal with it now. Don't think there is enough awareness of the link to autism though, think it could be damaging, mentally, for anyone undiagnosed. Am curious as to how common or undetected it is.

  • in reply to Phased

    quick Google also suggests physical techniques of course - elevating legs, head between knees,  -not ideal if the situation already has a stigmatising effect socially tho' :-(

    "counter-pressure maneuvers: 
    Some people find relief by tensing muscles to increase blood pressure. For example, grip one hand with the other and pull them in opposite directions, or squeeze your legs and fists. "
    Wonder whether there are "safe situations where your son starts to notice reduction in BP and could exercise some control with the muscle tensing strategy?
    maybe somewhere to go with on that? naturally recommend in context of medical advice and training to ensure safe and suitable in context.
    Best wishes

  • A reduction in blood pressure as a fight or flight response is prehaps not what you are describing?

    Fainting or a "vaso-vagal" response to fear or anxiety is.

    Nonetheless debilitating - I am sorry to learn of this - not pleasant for all concerned.

    Reducing the anxiety at source appears most immediate solution however contextually these are "normal" expectations that your son's neurodiversity is clearly unable to stay capable in.

    People (professionals included) often only see and engage with things that they want to see or can explain.

    Well done for continuing to do all you can to support your son.

    As such things are anxiety related strategies for your son to learn to employ in order to remain "grounded" in a "graded exposure" fashion might be worth exploring to potentially increase capability range.  Suggest not to think of this as "tolerance range" as life should be more than just "tolerable" in my opinion.

    Personally though once I have had several "triggering" responses to situations I find that even the thought of them increases anxiety.

    No quick fix however I don't think despair is a great answer to give you.

    Achieving a physical response that increases blood pressure is ironically thought to happen by the sort of PE that your son wasn't able to engage with.

    For a long time I trained in recognising and exercising physical control of my body so that I could withstand challenges - cycling was my first introduction to increasing cardiovascular endurance and in some senses a mindset that I could achieve more physically than I was expecting... The took this into martial arts - appreciate this is unlikley a go to for someone already fainting with anxiety however maybe one day?  Safe environment for whatever type of exercise is tried naturally an essential pre-requisite.

    Best wishes to you and yours

  • Thankyou so much for replying. Had started to think it was super rare or something. They did mention about the hypermobility link and POTS. Does make me wonder how many out there who struggling with it and it put down to anxiety. Only seems to be addressed when full blackouts do happen. My son was still referred to a psychologist first before having tilt table test. Not all in his head after all.

  • I had hypertension, but since I have been on anti-hypertensive medication I have had dizzy episodes on standing. My BP is now well within the normal range. I have had one episode where I blacked out completely on standing from getting out of bed. I fell, taking a table with me,  but no lasting injury, thankfully. I have come across other autistics with POTS. I suspect that orthostatic hypotension is another co-occurring condition common to autists, like gut problems and hypermobility.