Alexithymia: Some More Words About a Very Useful Word

If anxiety is a troublesome word, alexithymia is a supremely useful word. It was a word Mr. Orangutan and I first discovered within Oranguette's ASD assessment report. We didn't pay it much heed at the time. I still had a lot of blinders on regarding Oranguette's diagnosis. All it meant was she was unique and quirky, right? A few minor accommodations here and there, and I was sure she'd be off to the races, reveling in her personal superpowers. I could not understand why the report coded her with a disability. Surely that was excessive?

Of course I was very wrong. Soon Mr. Orangutan and I would rediscover that forgotten word, as we fought to keep pace with a raging mental health crisis and navigate the minefield of "help" that was often anything but.

As a fun aside -- and I think now is high time for a little levity -- I have synesthesia. It is one of my favourite aspects of being neuroatypical. Synesthesia is a quirk where the senses overlap, or when sensory input of one type triggers perceptions of another type. It frequently co-occurs with autism. I have the relatively common form, where letters are coloured. When I am typing or reading, I don't really pause to see all the colours, though the starting letters of words tend to project their hues. But when I slow down and stop to smell the roses, so to speak (I don't actually experience any smell-related synesthesia that I am aware of!), and focus on the letters of a word, the colours of each letter start to shine. A given letter always has the same colour, though Oranguette, herself a synesthete, and I have had (mostly) friendly arguments over what the "right" colours are. I've made the diagram above show the colours of each letter in the word "alexithymia" as I perceive them. It falls a little short; I can't quite get the shades of red right, the "e" needs to sparkle, and it would look better on a white background but then the "i"s disappear, which they don't do in my head. Nevertheless, it was a fun diversion.

So what is alexithymia? It means an inability to recognize, label, describe or communicate one's emotions. My lay-orangutan's understanding is that alexithymia has a very significant overlap with autism, although it is not an inherent feature of autism. It is also related to, but distinct from, interoception. Someone with alexithymia is not emotionless, though they may experience a limited range of emotions. They can also be overwhelmed by huge emotions that they may not understand well.

As much as I like the word, alexithymia is categorically not a good thing. It is tied to depression, anxiety, and suicide. But therein lies its utility and explanatory power.

I have some degree of alexithymia myself. Consequently, I am rather distrustful and suspicious of emotions. I mean, I appreciate the odd transient burst of "happy", but personally, I'd rather settle for comfortable nothing and get rid of all the pesky things like anger that I often recognize too late, and can never quite figure out what to do with once it shows up and won't go away (other than start a blog, say). Emotions are troublesome. However, emotions do demand to be understood and processed, and, however inconveniently, the inability to do so seems to be a driving factor in mental illness.

Alexithymia and Conventional Therapy

So then, if a person has alexithymia, therapy should help, right? So let's start with the standard therapist question: "How do you feel?".

A person with alexithymia would likely answer "I don't know" if they answer at all.

Try that as a distressed child with selective mutism. Especially as a smart, articulate (via written or spoken words) child who is expected to "know better". In our experience, you will quickly be labeled as uncooperative. Oranguette was told at Institution 1 that she didn't deserve to be there as she wouldn't cooperate.

Let that load of ableism sink in. Even I can now tell I am feeling enraged.

A therapist with a gentler although equally ableist mindset might invoke the idea of "readiness for change". We were told we would just have to bide our time until Oranguette was ready to participate in therapy. This is rather like telling a person who has lost the use of their legs that they will only get a wheelchair once they can climb the staircase to a wheelchair store on the second story of a building with no elevators.

Alexithymia and Neurodiverse-Affirming Therapy

ND-affirming approaches, in contrast, recognize that neuroatypical people often experience and communicate emotions differently, and support that. It really is that simple. Where that understanding leads is really up to the individual.

Indirect approaches have been useful for us, for example, those that pick apart the emotions of cartoon characters like SpongeBob SquarePants or Shaun the Sheep. That can be a fun, even hilarious, exercise when done spontaneously and in small doses. Oranguette has also taken great glee at times in having Mr. Orangutan pick apart my own emotions, with the aid of a feelings wheel. I mean, what teenage orangutan (let alone one with PDA traits) wouldn't appreciate that sort of turning of the tables and leveling the parent-child power imbalance? Some ideas found in conventional therapy approaches have proven useful for us, provided that they are adapted and tailored to autistic brains.

The Five Whys

This post lends itself to a more general discussion of problem solving and uncovering answers. Albert Einstein famously said "If I had an hour to solve a problem, I'd spend 55 minutes thinking about the problem and 5 minutes thinking about solutions." Mr. Orangutan introduced me to the "five whys" approach as a quick and effective tool for root cause analysis that provides a useful way of actually... getting somewhere... with problems. It is interesting to apply it here:

1. My child will not participate in therapy. Why?

2. She is uncooperative. Why?

3. She won't answer questions on how she feels. Why?

4. She seems panicked/shut down/dysregulated, so maybe she is stressed by the questions. Why?

5. Maybe she does not know how to answer the questions. Why?

6. <Google search of "possible reasons a person cannot identify their feelings">. The first result is a wikipedia entry for Alexithymia.

Now we are getting somewhere useful. A completely new rabbit hole has opened up to fall down! There's finally some real information to be gleaned from the answer to the fifth question.

I admittedly cheated here. We had a head start in that we had already been introduced to the concept of alexithymia, although it took us a long time to understand its relevance. As to specifics of the above analysis, there's nothing magical about the specific number of steps that should be involved; it could be more or less than five. The first two "whys" really wasn't so much of a "why" as a "please be specific". I had to resist the temptation to fall into an infinite loop between steps 2 and 3, hold onto curiosity rather than judgment, and keep drilling downwards.

Nevertheless, I this little example is illustrative, and solutions become apparent if problems are properly understood. Even for problems as seemingly intractable as mental health and neurodiversity.