My autistic identity crisis

The life of an undiagnosed autistic is liminal. The concept of liminality describes “something on the threshold of perception”—in this case, a life lived on the margins of society. Arnold van Gennep, an early German anthropologist and folklorist, defined liminality as the threshold that marks the boundary between past and future identities or social positions.

For undiagnosed autistics, liminality is a psychological and emotional state during which we stand between two different identities: autistic and non-autistic. There is the nameless state we know to be true, where we feel connected to things in deep and powerful ways; and there is the state the world tells us is true, one of differences, deficits, unmet needs, and anxiety. We know we do not belong in one, but we do not yet know how to belong in the other. Until we are diagnosed (whether clinically or by self-identification), there’s a sense that we do not belong anywhere.

More people than ever are being diagnosed with autism. Ideally, a diagnosis provides clarification and allows a person to take their first steps out of liminality and begin the journey to acceptance and the creation of a new identity. But an autism diagnosis brings unique challenges. For reasons I am unable to fathom, some people believe they have the right to challenge this diagnosis or comment upon it.

My identity does not belong in the public. It is not up for debate. Yet many who meet me seem to believe it’s appropriate to offer their view, which often contradicts what I have spent years coming to terms with. Not only is it exhausting to defend myself, to prove how autistic I am with example after example, but after a lifetime of doubting my own experiences (and being told that I am both too much and not enough), judgmental comments land hard on the young and tender parts of me. The message received is that I cannot be trusted, even with my own identity.

Popular culture is partially to blame, as autistic people are coded to be easily recognizable. Fictional characters, like Dustin Hoffman’s character in Rain Man or the brilliant Astrid from the TV show Astrid, reinforce narrow stereotypes. I’ve heard that I “don’t look it,” that “we’re all on the spectrum,” that “you can’t be autistic, because I saw you dancing at a wedding,” that “I can’t tell,” and that “you hide it well.”

Aside from being personally hurtful, comments like these create a larger more problematic issue of credibility. They increase the flooding thoughts of self-doubt that I have waded through my entire life.

As children many of us were talked out of our experiences. We were told not to “stim” openly or were judged for our sensitivities. We were labeled as difficult for trying to maintain an environment in which we could exist without being overwhelmed. According to the people around me, I was “too autistic” as a child, and am “not autistic enough” as an adult.

Characterized by uncertainty, liminality is a threshold lined with contradictory emotions. There is possibility and potential, anxiety and discomfort. Undiagnosed autistics spend their lives between being different and knowing (or not knowing) why. It’s a place marked by loneliness, isolation, and ambiguity.

Most humans dislike unpredictability; we are meaning-making machines. This discomfort rises to a different level in autistics who rely on predictability for their physical and emotional wellbeing. Without predictability, we experience varying degrees of anxiety. And without an identity—that most basic of human rights—this anxiety increases exponentially. When we are questioned and doubted, our parts lose hope that we will ever be understood. Accessing Self is challenging, obscured by protectors who have no one to trust. Shame quickly follows.

However, transformation within the liminal space is possible. A diagnosis, understanding who we are, helps explain our experience and transform our identity. Whether we choose to act on this new knowledge or to sit and quietly digest it, there is comfort in knowing that we are right. We were right when the world overwhelmed us. We were right that we didn’t fit in. It makes sense now that we flew into a window we could not see and sat bruised, momentarily stunned.

If you are a clinician, family member, or a friend to someone who discloses they are autistic, don’t question or doubt the diagnosis. Instead, ask how you can support them, ask how this news has landed in their system. They are beginning a journey that is much less lonely when walked with someone willing to accompany them.