01
What alexithymia describes
The term was coined in the early 1970s and literally means something like “no words for feelings”. It covers several components, each of which can be more or less pronounced in a given person.
Identifying feelings and telling them apart from bodily sensations
You notice that something is going on: your stomach feels queasy, your shoulders are tight, your head is full. But whether it is anger, worry, disappointment or hunger remains unclear. This difficulty in identifying feelings is considered a core part of the term.
Describing feelings to others
Even when you can place a feeling, you will not always find words for it. “How do you feel about that?” may then get only “No idea” or a description of what happened instead of how you experienced it.
A more externally oriented way of thinking
Common questionnaires also assess whether someone tends to focus on external facts rather than inner states. This component is the most disputed in terms of measurement, as the study by Williams and Gotham shows.
Not a lack of feelings or empathy
Alexithymia does not mean being emotionally cold or uninterested in others. Feelings can be strong and still be hard to name. Bird and Cook even suggest that some difficulties attributed to autism might be better explained by co-occurring alexithymia – explicitly as a hypothesis that needs further testing.
02
What research on autism and ADHD shows – and what remains open
Most data come from self-report questionnaires such as the Toronto Alexithymia Scale (TAS-20). A cut-off score separates “high” from “lower” scores. It is a research tool, not a diagnostic test.
More common in autism, but not in everyone
A meta-analysis by Kinnaird and colleagues reviewed 15 studies. In nine studies using a cut-off, a weighted average of 49.9% of autistic and 4.9% of non-autistic participants reached a high score; in the individual studies, the figures for autistic groups ranged from about 33 to 63%. The authors sum it up as common, but not universal.
Estimates depend on the sample
In a European study of 12- to 30-year-olds by Oakley and colleagues, 29.1% of the 179 autistic and 4.4% of the non-autistic participants scored above the cut-off. Different age groups, recruitment and measurement therefore lead to different figures; a single percentage is not a fixed value.
Questionnaires have limits
Williams and Gotham examined the TAS-20 in 743 autistic adults and a comparison group. The model did not fit adequately in either group; the problems lay mainly in the part on externally oriented thinking. They recommend relying mainly on the total score and combining several measurement approaches.
Only small studies exist for ADHD
We did not find a systematic review specifically on alexithymia in ADHD. In a study by Edel and colleagues of 73 adults with ADHD, without a control group, about 22% scored above the cut-off; according to the authors, the mean was not much higher than in population samples. Other small studies report higher proportions. A reliable figure for ADHD cannot be derived from this.
03
In everyday life: from what you can observe to a word for the feeling
The following steps are editorial suggestions to try, not therapy and no guarantee of success. They are meant to make conversations and your own decisions easier when the right word is still missing.
Start with your body and the situation
Instead of “What are you feeling?”, you can ask: What do I notice in my body? What just happened? A note like “jaw tight, after the loud meeting, had no break” is already a useful description.
A need can come before the feeling
“I need ten minutes of quiet” is a complete request, even if you do not yet know whether you are hurt or simply exhausted. The feeling can be clarified later – or stay open.
Use tentative words and simple scales
“Fairly tense, maybe 6 out of 10” or a short list of words such as tired, irritable, sad and restless can be easier than an open answer. You can correct a word later.
Agree on time to work out what you feel
With people you trust, you can agree that you may answer a question about feelings tomorrow or in writing. If uncertainty about your own feelings causes you ongoing distress or comes with strong anxiety or low mood, it makes sense to seek professional support.
A practical example
Example: after a long family dinner
A fictional everyday example shows how “No idea” can turn into a helpful answer. It is not a test and not a rule for what feelings have to look like.
- QuestionOn the way home, your partner asks: “Was today okay for you?”
- First answer“I don't know right now.” That is honest and not a mistake.
- BodyHeadache, shoulders hunched up, barely ate because it was loud.
- SituationThree hours of conversation, lots of questions about work, not a single quiet minute.
- Need“I need some quiet and something to eat tonight. We can talk tomorrow.”
- The next dayWith some distance, “annoyed by the questions” might fit – or it stays at “exhausted”. Either answer is fine as it is.
Published and reviewed on · About the author
Sources for the background information
- Gaggero et al. (2020): A Scientometric Review of Alexithymia ↗Review of 50 years of alexithymia research: history of the concept, characteristics and classification as a personality trait that was never included in the DSM. Basis for the definition; makes no claim about how common it is in autism or ADHD.
- Kinnaird, Stewart & Tchanturia (2019): Investigating alexithymia in autism ↗Systematic review and meta-analysis of 15 TAS studies with adolescents and adults. Weighted proportion of high scores from nine studies: 49.9% autistic versus 4.9% non-autistic; limitations include self-report and inconsistent questionnaire versions.
- Oakley et al. (2022, online 2020): Alexithymia in autism ↗European cohort of 12- to 30-year-olds: 29.1% of autistic and 4.4% of comparison participants above the TAS-20 cut-off; associations with anxiety and social communication, without evidence of causation.
- Williams & Gotham (2021): Improving the measurement of alexithymia in autistic adults ↗Psychometric evaluation of the TAS-20 in 743 autistic adults and a comparison group: inadequate model fit, especially for the part on externally oriented thinking. Basis for the note on measurement limits.
- Bird & Cook (2013): Mixed emotions ↗Theoretical review of the “alexithymia hypothesis”: some emotional difficulties in autism might be due to co-occurring alexithymia. Explicitly provisional and in need of further testing.
- Edel et al. (2010): Alexithymia, emotion processing and social anxiety in adults with ADHD ↗Cross-sectional survey of 73 adults with ADHD from an outpatient clinic, without a control group: around 22% above the TAS-20 cut-off. A small single study, not a prevalence figure for ADHD as a whole.
