The Internalized, High-Masking Experience Of Autism

Autism appears to be split between two categories or sides, one side is the part of Autism other people can see, what is “visible” or external. Then there is the other side of Autism, the part of Autism only the Autistic person can see/feel/notice. Much of social media is filled with Autistic people desperately trying to explain to the Allistic world what the internal side of Autism is. There is still a lot of progress to be made in that regard. 

I knew the distinction between what we have termed “high masking” vs people who cannot mask and/or don’t. I knew I was in the “high-masking” group as I had spent my entire life creating an elaborate mask to cover up my Autistic traits to the best of my ability. What I didn’t realize is that, high-masking or not, we all have Autistic experiences internally that no one would ever know existed. The only Autism that professionals tend to reference is what is visible to others; lack of eye contact, emotional outbursts, sensory seeking or averse, odd behaviors, etc. None of the ADOS-2 questions (ADOS-2 is the “gold standard” of Autism assessment tools) asks or assesses internal experiences. It is all about how we react, how we interact, what we do in front of the assessor. 

Our external behaviors matter, clearly. Our behaviors and the way we are perceived can bother us, can bother others, can have dire consequences. But that is not the entirety of our Autistic experience. In fact, many of us would say that our internal experience of Autism is far more pervasive, extreme, unbearable (at times), than what we look like on the outside. When we are “high-masking”, our external signs of Autism may be even more covered up yet our internal experience is just as intense, just as Autistic. 

Those of us with a “high-masking” internalizing profile of Autism, experience distress that you would never know about. We get misdiagnosed with mood disorders, personality disorders, etc because we don’t make sense. We don’t necessarily “look” Autistic from the outside. And we may not know enough about Autism to be able to know that what we are experiencing on the inside is Autism. It took me decades to figure out what I had been experiencing internally was Autism and I am a licensed therapist! 

My hope is that professionals start to learn how to look for the internalized experience of Autism and take it just as seriously as what can be seen by the naked eye. The pain we experience inside, no matter what it looks like on the outside, is just as real, just as severe, just as disabling as anything that can be seen externally.