As a parent of a neurodivergent child, I have learned this the hard way. It can be frustrating and tiring (for all involved) to ask the same questions over and over: how are you feeling today? …are you hungry?…do you think you’re feeling down or just tired? It is only when I learned the concepts of alexithymia and interoception that things started to make sense.

Alexithymia

Defined as the inability to find the words to describe how you are feeling, alexithymia can be the cause of great distress. It has been found that somewhere between 40 and 65% of autistic people have alexithymia, although some new studies predict that the true figure is much higher. Before I had experience of living with a very close relative with autism, I would have been able to name several characteristic associated with the condition - lack of eye contact, difficulty in social situations, stimming - but it is alexithymia that I have noticed as the most obvious daily characteristic of her autism. My daughter is highly empathetic, can engage socially and has no problem with eye contact. However, for an otherwise articulate teen, we began to notice her struggle to name her emotions.

For example, she knows when she has a strong negative feeling, but not how to differentiate it from other negative feelings. She may have only one word to describe it - often, “I’m angry” or “my brain is funny”. It takes more gentle probing to help her towards the nuance that she is unable to describe - perhaps she is not angry, but frustrated, disappointed, worried or in sensory overload; and perhaps she is not exactly sad, but rather low on energy, tired or even hungry.

Interoception

This is compounded by, and overlaps with, the idea of poor interoception, which is only just becoming understood among experts. Often described as a sixth sense, interoception is a neuro-typical person’s ability to interpret signals from inside their own body. That is, while the five senses might help to perceive external signals, interoception allows us to perceive internal signals. Imagine for a moment, what it must feel like to be unable to: feel hunger, know that your are thirsty, understand that ‘butterflies in the stomach’ might not be a bad thing, and in more extreme cases, to be unable to tell the signs that you need to use the toilet. For the neuro-typical among us, it is almost impossible to conceive how confusing and distressing everyday life must be without this kind of internal sensory toolkit.

Taken alongside the idea of alexithymia, the struggles of many autistic people come more sharply into focus.

How to help

Once these concepts are understood, parents, siblings, friends (and perhaps teachers) can become more adept at ‘tuning-in’ to those who struggle with articulating and interpreting their feelings, both emotionally and physically. We know when my daughter is looking dehydrated and depleted and says ‘my tummy is sore’ or ‘I’m feeling funny’, it probably means she hasn’t eaten enough. Perhaps she hasn’t drank any fluids, but missed the signs that she needed to. Similarly, hunched shoulders might be our cue, ‘I see your shoulders are hunched again, is there anything worrying you?’ In this way, we can help the young person to spot their own physical signs of emotional or physical distress.

In this excellent conversation with Dr Joanna Berry on the SENDCast, we learn more about these kind of tips, and more - well worth a listen - embedded below.

I must be clear: all of this does not mean that autistic people do not ‘feel’. In my experience, the opposite is true - my daughter feels intensely, but this also comes with an intense frustration when communicating and making sense of her feelings with others. It is also why the standard approaches to counselling, CBT or other mental health therapies must be tailored carefully for autistic people. It is a sad fact that around 30-40% of young people with ASD or ADHD also suffer from mental health problems such as anxiety and depression. One of the best questions we can ask as parents or teachers is whether the support offered by professionals can be done through the lens of neurodivergence. As you can imagine, asking my daughter to keep a diary of her emotions is not going to be productive, no matter how well meaning the CBT therapist.

The concepts of alexithymia and interoception caught me completely off guard as a parent, so I hope this piece helps others to expand their understanding of neurodivergence. There are brilliant people working at the forefront of research on these aspects of ASD and much more. In particular, I can recommend the work of Nurturing Your Autistic Young Person by Cathy Wassell, a very helpful starting point for any parent, carer, friend of relative of an autistic young person. Or, you can delve deeper into the research here.

In Williams et al (2023), we gain a tantalising hint that future studies might establish a link between alixythmia, interoception and some of the social difficulties associated with ASD:

…reduced interoceptive ability has been hypothesized to serve as a pathophysiologic basis of alexithymia, a personality trait characterized by difficulty identifying emotional states in oneself or others (Brewer et al., 2016; Murphy, Catmur, et al., 2018; Trevisan et al., 2019). As levels of alexithymia are often substantially elevated in the autistic population (Kinnaird et al., 2019; Z. J. Williams & Gotham, 2021), interoceptive difficulties may be particularly relevant to understanding the socio-emotional differences present in many autistic individuals (Trevisan et al., 2021).

Furthermore,

…interoceptive training has recently been tested as a novel intervention modality for reducing anxiety in autistic adults, with an initial study demonstrating modest benefits over a control intervention (Quadt et al., 2021). Given the many potential roles of interoception in autism and associated neuropsychiatric conditions, a deeper understanding of interoceptive differences in autism can potentially provide novel insights into several clinically relevant features of the condition.

In summary, next time you find yourself asking, ‘how are you feeling?’ perhaps take a beat, notice as much as can, and re-phrase the question - these small changes can make all the difference.

That’s a lie: I have written a lot on Substack but those posts now languish in my Drafts. You see, I still have something of the ‘yips’ when it comes to the Publish button - largely a case of self-doubt, as well as a creeping sense of dishonesty in my writing. Was I writing for the right reasons? This is a question I have been reflecting on over the summer - I return to the keyboard with a renewed commitment to ‘thinking in ink’ and writing what I (actually) think.

It is not that the writing has dried up entirely (*shh*, I have been cheating on Substack over here, on Sec-Ed , thanks to the encouragement of editor, Pete Henshaw). These regular commissions have allowed deep dives into Change Management, School Leadership and learnings from my work on edu-startup, STEM Horizons. While I have enjoying the chance to write about these professional themes, I feel an urge to write more on a personal level.

I started blogging a long time ago, and when I reflect on my motivation, it has always been about organising my thoughts about something new. The new thing in my life over recent years has been difficult to talk about, so I am hoping that writing might help me make sense of it all. In June 2022, my eldest had her first epileptic seizure, and four years later we are still dealing with our ‘new normal’. Although she has been seizure-free for a while now, she continues a daily battle with the side effects of a cocktail of medication, as well as ARFID (Avoidant Restrictive Food Intake Disorder) and not yet formally assessed (but clinically accepted) autism. We have had to learn a lot about epilepsy, eating disorders and complex neurodivergence. There a very few silver linings. However, I have no doubt that nurturing a neurodivergent child is making me a better teacher, leader and person. My daughter struggles every day, but she does it with a resilience and dignity befitting of her name, Grace.

Now that we know much more about what we are looking for, we see some familiar traits in my youngest - although he presents in his own special way. As my wife often says, ‘when you’ve met one person with autism, you’ve met one person with autism’. We still have so much to learn - but if there is one thing we do know, it is that we are not the only ones - when it comes to neurodiversity, especially complex overlapping conditions, many clinicians we have met on our journey have struggled to find answers. If you look hard enough - and believe me, we have - there are some brilliant podcasts, researchers and books out there: over the coming posts I will aim to make sense of the best advice and learnings in this largely unexplored field. The return to blogging gives me a chance to share some of our hard-worn wisdom as a family, while also learning more about neurodiversity to help my children as they navigate a ‘neuro-normal’ world.

If you signed up for this substack based on my previous posts on Change Management and School Leadership, I hope you will still follow my writing on these themes on Sec-Ed and via other publications and books. This blog will be the place I manage change in my own understanding of the diversity of brain - first post incoming soon on this fantastic book by Cathy Wassell, which I only wish I’d read many years ago:

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