PDA, Alexithymia, Interoception and autism-affirming healthcare (10 minute listen)

Published on 30 May 2025 at 11:34

I had such an autism-affirming experience with a healthcare professional yesterday, and it's really lifted me psychologically..but unfortunately this is not yet the 'norm' in my experience and those of many other speaking autistic adults without a learning disability.

My physical health history is littered with being 'blue-lighted' to hospital, sometimes without any previous contact with healthcare services prior to becoming so ill that it became an emergency, sometimes despite trying to get help in the early stages.

Things really did degenerate quickly for me in terms of my health a few years ago, as I approached my 50's, and I had two separate and serious health scares in a short space of time.

The first scare was because I developed high blood pressure. I was working nationally and travelling a lot for work and not eating well before developing what I thought was just a constant headache. I was also experiencing episodes of shaking and feeling like I was 'rushing' (a euphoric state that drug users who abuse stimulants and 'uppers' experience). I clearly remember telling my boss that I felt like I was 'flying' and 'smashing' my job, and how much I loved it. This went on for weeks until I couldn't cope with the headache anymore and eventually went to the GP to see what could be done about, what I assumed were, hormone headaches during peri-menopause.

The GP took my blood pressure, twice, and got readings of around 220/105 each time.

These kind of readings aren't usually compatible with sustaining life when left untreated - I was in hypertensive crisis and should have been blue-lighted right there to hospital.

She explained to me about 'white coat' syndrome, where false blood pressure readings are recorded due to a spike in anxiety about being at the doctors and having your blood pressure measured, and even though I explained that it was unlikely that was the cause of the readings (having worked in cardiology as a technician in my late teens/early twenties) - she assured me that if my blood pressure really was that high then I would be feeling very different to how I was describing I felt and be very unwell.

She advised I buy a blood pressure machine and monitor it at home for a few days - which I did.

I eventually rang back 2 days later and spoke to a different doctor, and he rang 999.

When the ambulance arrived at my doorstep, I answered it and led the man and woman in. The woman kept asking me 'where's the patient?'. I kept telling her it was me, and after repeating it a few times, she became very angry with me and lectured me on how they had been called for an emergency. I explained that my doctor rang 999 because he thought it was an emergency. In a very disgruntled way she asked the man to take my blood pressure. Repeating the measurement on both arms, standing and sitting, I was then rushed on the ambulance to my local emergency department.

I'm happy to say that my blood pressure isn't exactly ok now, but with a lot of daily medication, I'm not at risk of complications of high blood pressure.

The second 'near-death' incident, was when I developed gall stones and sepsis from complications.

Again I shuffled to my GP on an emergency appointment, taking 45 minutes to complete what is usually a 10-minute walk because I knew I was too ill to drive, told him I felt like I was dying and he laughed at me and stated that if I really was dying then I wouldn't have been able to walk to the surgery. Despite telling him how long it took me and that I nearly passed out a few times, he completely dismissed me.

I shuffled back home with another round of pointless antibiotics and my brother drove me to accident and emergency, where I spent many weeks on high dependency in this weird semi-induced coma, surgeries I can't remember having..it's mostly a blur except for coming around sometimes to hear panicky nurses shouting things and lots of people suddenly arriving around me and fussing.

It took me months to recover, and I don't think I fully have now. The biggest impact and loss for me personally is not being able to think as quickly as I did before and remembering things, including words sometimes. For sure I am living with a long term complication called Sepsis-induced brain dysfunction.

When I went to the doctors a couple of years later I noticed a poster in the reception area about noticing the signs of sepsis, one of the signs literally is feeling like you are going to die. The exact report I'd given the doctor.

I feel like I am recovering a little bit more all the time, and I'm 6 years post-sepsis now, but I'm so incredibly frustrated with healthcare professionals that just don't listen to me and make so many wrong assumptions. I don't want to die one day because of this.

So why do have have these kinds of experiences of being dismissed by healthcare professionals?

I have a lot of theories!

  • I confuse physical symptoms with emotional symptoms, and emotional symptoms with physical symptoms.  For example, I will think I'm hungry when I'm anxious and have to consciously work though a memorised checklist/flow diagram/decision-making tree to discern which it is.

 

  • I find it really difficult to explain how I'm feeling. I once described to my child on the way back from a spa day that I was feeling 'tired but not sad' and them revealing that I was in fact 'relaxed'!

 

  • I don't process physical sensations as expected by healthcare professionals, or express 'pain' in the expected way.

 

  • I am matter-of-fact when reporting very serious 'pain' and symptoms and don't cry or grimace in the expected way.

 

  • I stay 'on my feet' until the bitter end. A bit like cats that can continue moving and being alive even with the most horrendous injuries!

 

I've not been diagnosed formally with either of these conditions, but it may be I have Alexithymia and/or difficulties/differences with interoception - both are more common for autistic people than non-autistic people.

 

and finally..

 

  • When asked or prompted by someone else to visit a doctor, because they are worried about me, I don't. Left alone, I will usually get to a doctor early on. I feel incredibly anxious when someone tells me to do something, even when I know it's for my own good and I really want to do it, and will refuse to do it because I perceive a loss of control. This could be PDA.

 

Self-advocacy to facilitate Autism-affirming healthcare - and Hywel from Wellness Pharmacies, Old St. Mellons

I've learnt, the very hard way, that to give myself at least a fighting chance at healthcare appointments, to disclose that I'm autistic, and that I confuse emotions, find it difficult to describe symptoms and experience 'pain' differently.

This doesn't always mean I'm taken seriously, but it's all I really can do to try and get the care I need.

A couple of days ago, I needed some antibiotics and decided to find a common-ailments prescribing chemist - as I usually find a better standard of care for these kinds of conditions than at my GP surgery, and it eliminates the soul-crushing experience of trying to get an appointment.

I met Hywel who not only listened to my disclosure, but affirmed me as an autistic person with possible Alexithymia, interoception difficulties and PDA.

 

  • He considered that I don't process pain in the expected way, so asked if I'd had the issue in the past and how did my body feel compared to that time, did it feel similar or different?

 

  • He tested for absolute measures of whether I had the issue, rather than relying on my self-report of symptoms and feelings.

 

  • When I described delaying the visit because my caring, loving, concerned partner had suggested it, and PDA, he was non-judgemental and simply asked what PDA meant.

 

..and yes..I am feeling much better now!

 

References

  • Williams, Z. J., Suzman, E., Bordman, S. L., Markfeld, J. E., Kaiser, S. M., Dunham, K. A., Zoltowski, A. R., Failla, M. D., Cascio, C. J., & Woynaroski, T. G. (2023). Characterizing Interoceptive Differences in Autism: A Systematic Review and Meta-analysis of Case-control Studies. Journal of autism and developmental disorders, 53(3), 947–962. https://doi.org/10.1007/s10803-022-05656-2

 

 

 

 

 

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