Does having Trichotillomania and Dermatillomania fall under the Autism Spectrum Disorder?
How hair-pulling and skin-picking could be linked to autism
There is not much known about Trichotillomania and Dermatillomania.
These are two “body focused repetitive behaviours” (brfb’s) that involved compulsively pulling out your own hair (Trichotillomania) from anywhere on your body, and picking, squeezing, rubbing, digging, scratching, biting at your skin, lips and fingernails (Dermatillomania).
Often people who have these conditions (and it seems that women and girls are more affected) describe how they fall into a trance-like state when picking or pulling that last for up to an hour.
During this time the person will repeatedly pick at their skin and pull out their hair, often with a focus to remove irregularities. This could be hairs that have a certain texture or roughness or are ingrown, and variations in skin texture such as bumps, pimples, scabs, peeling or flaking skin etc.
Often the result of endured picking and pulling is damaged skin and scarring and bald spots. This in turn creates feelings of guilt, repulsion, anxiety and stress in the person who then seeks to mitigate the discomfort through more of the same behaviour.
The underlying reason that people pick their skin and pull out their hair is that these behaviours can, for the duration of the behaviour, regulate the nervous system and offer soothing and comfort to a stressed and anxious person.
BRFB’s are compulsive behaviours, and do not fall under the spectrum of addiction.
There is no-known “cure” for those who compulsively pick and pull, through as someone who has both Trichotillomania and Dermatillomania I know that I am less likely to pick and pull when I experience more feelings of contentment and security and more likely to pull when I am stressed and anxious.
I have had Dermatillomania since the age of about four and Trichotillomania since around ten years old.
It’s been nearly thirty years and numerous consultations with doctors, therapists, TCM, somatic experience, acupuncture, nutritionists, and many many more various healing modalities, none of which has been able to stymie the compulsion to pick my skin and pull out my hair.
Last year however I had an interesting consultation with a senior neurofeedback scientist. We spoke about my desire to curtail my compulsions and she gave me some information that simultaneously offered so much relief and sparked an intense curiosity to learn more:
The scientist informed me that her daughter had autism and one of the behaviours that presented with her autism was Trichotillomania - hair-pulling.
The conversation revealed further insights into how autism, up until about ten years ago, was primarily researched among boys which lead to the screening and diagnosis to be limited to the signs and symptoms that presented most commonly among the research participants - boys.
More recent research has indicated that girls and women indicate different signs and symptoms to boys and men, which has meant that previously many girls and women have been misdiagnosed by not meeting the criteria which was only relevant to boys and men.
This was very interesting to me, and as I read more into autism spectrum disorder and how it presented amongst girls and women I felt quite sure that I, along with my decades of picking and pulling, would likely receive a diagnosis confirming my place somewhere along the spectrum.
I haven’t pursued diagnosis however, mostly because it costs around $3000 which I cannot understand.
I also don’t know too much about the differences between autism, Aspergers and ADHD and it seems my symptoms could fall under each and all of these brackets.
The relief I felt when I was explained that my Trichotillomania and Dermatillomania could be part of something more encompassing was that it offered some clarity and insight into my struggles with socializing.
One of the key reasons why so many girls and women failed to meet the original autism criteria was that they were able to perform social behaviours that were classically deemed impossible/improbable for an autistic person; eye contact, conversation, sociability.
It turns out that girls with autism are often able to “perform” social behaviours and tolerate “normal” socialization techniques because they were able to observe, copy, and replicate the social behaviour that they witnessed being accepted around them.
This is often described as “high functioning” autism, where the signs and symptoms are milder by comparison and may even be misdiagnoses as anxiety, depression, highly sensitive, etc.
The other piece that clicked into place when I researched more into female specific autism symptoms was sensory sensitivity; or rather hypersensitivity to sound, light, taste, texture etc.
Listening to Maisie Hill talk more about her autism which she became aware of in adulthood, really helped a number of other pieces fit together for me. You can listen to her podcast episode on the topic here.
One thing that was interesting to learn about was how, once a diagnosis had been ascertained, symptoms seemed to amplify in the person at least for a while and then would settle. It’s almost as if they had finally been given permission to unleash there personal “oddities” they had been concealing for so long, it was ok that they were different and now they finally understood why and they had an explanation for it all - what a relief!
I’m really interested to learn more about how Trichotillomania and Dermatillomania could be part of the autism spectrum and how this shows up for girls and women in particular. If anyone reading this happens to be a researcher on the topic I’d love to talk more with you.
I’ll be sharing more about Trichotillomania and Dermatillomania. One thing I have learned in sharing about these conditions is that a lot of people never knew there was a name for it, nor did they realize that other people do it too.