Autism, Anxiety, mcas and interoception

I have been in, advocating and presenting on interoception plus neurodivergence for many years now. I do not view myself as ever being anxious unless I am lost or the some computer technical diggerydoo/app malfunctions or if my body seems to be exploding. That is because by then it is a strong emotion and signifies with me.

So, over the years people have asked me if I am anxious I have always said no but perhaps not recognised it and this is to do with alexyithmia and our inner sense of interoception.

Garfinkel found herself captivated by a new area of research called interoception. In contrast to exteroception – the collection of senses, from vision to smell, that allows us to scan and palpate the external world – interoception is about the perception of our visceral world. It encompasses the array of biological sensors that permeate our internal organs – the heart, the gut, the lungs – and continuously track the minute variations of temperature, pressure and chemistry within (Wired).

This is one of the internal senses that can tell you if you are hungry, thirsty, in pain, tired, need the toilet, or even having trouble breathing. However, I have felt very unsettled during unexplained times and this unexplained part became more of an issue when my body really had had enough.

I was not believed to have these symptoms of illness, many infections, gastrointestinal issues, extreme fatigue or even visible injuries most of my life. I did not have the right support and all these built up in my body as they do for many others with hypermobility Ehlers-Danlos syndromes or Hypermobility Spectrum Disorders as autism is 7 times more likely to occur with these and for ADHD approximately 5.6 times. I was often told 'it was all in my head'

Dysautonomia, a dysfunction of our autonomic nervous system which often co-occurs with hypermobility disorders, complicates matters with symptoms like heart palpitations, dizziness, brain fog, and unpredictable chemical surges. The frequent lack of recognition of these interactions can severely impact quality of life.

RESEARCH - I was invited to take part in a research study at Brighton and Sussex Medical School around 2018/19 led by Dr Garfinkel, focusing on anxiety and autism. Being honest, as I tend to be, I didn’t enjoy taking part at first. I found the tasks hard to make sense of, quite long, and very repetitive and I may have said so at the time.

However, as the study went on, something important shifted. I began to find ways of better understanding and regulating what I was experiencing internally. This helped me navigate the intense chemical and enzymatic surges affecting my autonomic nervous system, which in turn were driving mast cell–related histamine release. This process is sometimes described as mast cell activation syndrome/disorder (MCAS) and may underpin some idiopathic anaphylactic reactions that are not directly linked to food.

This was genuinely transformative for me and helped explain why I continued to develop and embed this learning into our training. The study itself despite my initial reservations, for which I later apologised, was remarkable. It was subsequently written up in Wired and has gone on to inform thinking about future interventions that focus on the body–brain connection.

The following quote is one small part of that work, but it underpins much of the emerging understanding in this area.

Green described to Quadt how she would often feel assailed by sensations that would emerge unexpectedly and rapidly overwhelm her. She described a particular pattern as the “woosh”, a feeling akin to being inside a falling elevator. “It just goes haywire. It just goes crazy,” she says. She feels her body being pumped with adrenaline and histamines, leaving her gasping for air and enveloping her skin with a red, itchy rash that feels so hot “you could cook an egg on it”. “Once I had a crisis so bad I ended up in hospital and couldn’t eat for months,” she says. “It made me really anxious because everything is out of control.”

by Jane Green MBE

Read more here

https://www.wired.com/story/sarah-garfinkel-interoception/

The Study published later is here