Explaining autism impact on other health conditions

I have recently had a bit of a downturn in my physical health, and had put particularly the fatigue down to a lack of predictability causing more autism related exhaustion than normal. Turns out that was an incorrect assumption to make. 

After some routine blood tests produced some not very routine results, I've now spent the last month getting a whole bunch of other tests to come to the conclusion that I'm anaemic, with a severe iron deficiency, despite being a meat eater. Cause of anaemia is as of yet unclear, but it may be malabsorption due to another medication I am on.

This now produces the problem where I have to impress on my GP (and other people in my life) that some remedies are made significantly more challenging from the autism, despite the autism not being the cause. This is also a new GP as I recently moved to a new area, so they have no experience with me, and I have very little experience with them.

I can't just "drink these supplements" as I'm extremely fussy about fluids, and currently only manage water and hot water. Drinking orange juice with iron tablets just isn't an option, regardless of how much it would improve my absorption. While I'm not hugely restrictive about what I eat, I do still have texture based sensitivities and struggle significantly with lack of hunger and fullness cues. Switching up my routine to "just try and eat smaller meals but more often, and also eat these things in this different way" isn't really an option without a lot of additional support which wouldn't routinely be offered for this level of issue. 

Has anyone else had this issue of trying to explain the additional challenges that autism is posing to an unrelated health problem? How did you go about communicating it in a way that didn't make the GP or other people think you were just being "difficult". 

Parents
  • Dear Fibonacci Squid,

    It sounds really difficult to be going through this and I know many of the community will relate to the communication difficulties with medical professionals. I emphasise with the difficulties with supplements as I have struggled with my own medication regime in the past due to their strong taste. It can be really challenging to explain this to GP's but it is important to be direct with the difficulties you are facing. I know some GP surgeries have changed their process to submitting online requests for appointments, if your GP has it may be easier to write down the challenges you are facing rather than having to discuss it face to face or over the phone. 

    I have also linked to the My health passport as it can help explain your individual accessibility requirements to healthcare professionals. 

    I hope this helps,

    Olivia Mod

Reply
  • Dear Fibonacci Squid,

    It sounds really difficult to be going through this and I know many of the community will relate to the communication difficulties with medical professionals. I emphasise with the difficulties with supplements as I have struggled with my own medication regime in the past due to their strong taste. It can be really challenging to explain this to GP's but it is important to be direct with the difficulties you are facing. I know some GP surgeries have changed their process to submitting online requests for appointments, if your GP has it may be easier to write down the challenges you are facing rather than having to discuss it face to face or over the phone. 

    I have also linked to the My health passport as it can help explain your individual accessibility requirements to healthcare professionals. 

    I hope this helps,

    Olivia Mod

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