How Diagnosis Is Life-Changing for Women With Autism

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I have administered the Autism Diagnostic Interview the Revised Addition (ADI-R) 132 times as of today. I have done autism testing and treatment for six years now. Every day for six years, I got up and administered test after test without ever realizing that I had autism. I sat with autistic people and asked them the same lengthy series of test questions for years and I never saw myself in any of those questions. I also did not realize I was anxious. This is particularly ironic because when I asked my 10-year-old son what Mommy gets stressed about, he didn’t hesitate for a second before he said "everything."

Last year, the ADI-R was administered to me. I am autistic and I think my utter lack of self-awareness is the epitome of one of the things I struggle with most, alexithymia. According to an article on the topic in Scientific American by Deborah Serani, “The clinical term for this experience is alexithymia and it is defined as the inability to recognize emotions and their subtleties and textures. Alexithymia throws a monkey wrench into a person’s ability to know their own self-experience." For me, I was so blind to my own inner workings that I had frequently described myself as a chill and relaxed person. I am, in fact, one of the most tightly wound people you will ever meet. Alexithymia also made me blind to my own autism.

I am particularly adept at reading the emotional states of others when they are independent of myself. I am gifted and I have been a therapist for 20 years. I can help people see their own emotional states even when they have alexithymia, but with regards to my own emotions and the emotions of others as they relate to me, I am completely and utterly blind.

I have also fallen victim to one of the most common problems associated with women with autism: misconception and misdiagnosis. I have fallen victim to this even in my own understanding of myself. According to Leedham, Thompson, and Freeth (Autism, 2019), autism in women is a “hidden condition." Females on the spectrum receive diagnoses in middle to late adulthood on average. This is largely because females don't present in the same way males do. The history of autism is a largely male-driven affair. Most of the early studies involved boys. This has led to a distinct gender bias in the perception of autism, and as females and those who are assigned female at birth present very differently than males, we are consistently underdiagnosed and misdiagnosed. We are also much more adept at masking or changing our behavior to appear more normal than we are.

Because of this, women are often not diagnosed at all or they are diagnosed very late in life and that leaves us without a vital tool, self-understanding. I cannot overstate the importance of my diagnosis to me from a psychological perspective.

I have watched Hannah Gadsby’s Douglas on Netflix 12 times, and in it, she describes getting her diagnosis as getting the “keys to the kingdom of herself." That is how I felt when I got my diagnosis. I felt like for the first time I saw and understood myself in a real way. It was ground shaking. All my ruinous friendships, tragic relationships, victimizations, and the way people stared at me like I had lobsters coming out of my ears half the time suddenly made sense.

All my life, I had beaten myself up for these things. I am an intelligent and educated woman with a plethora of accomplishments and successes. How is it that I can be conned by a 30-year-old vacuum cleaner salesman with no skills or intelligence? How is it that I cannot walk in a room of peers and leave without feeling like they all are terrified of me? How is it that I can't have a basic conversation with adults? How is it I can't understand basic social rules and cues without others reminding me? As a child, I was continuously called weird and difficult. People have frequently asked me, "What is wrong with you?" I have spent a lifetime trying to find ways to blend in but I have been unable to in most settings. My self-loathing on this matter has been all-consuming.

So, when I got my diagnosis of autism, it was like there was suddenly an explosive light that emerged in the darkness of all my mistakes. I am not broken. I am not just a bitch. I am autistic. According to Leedham, Thompson, Smith, and Freeth’s (Autism, 2019) findings, late diagnosis for women with autism facilitates the transition from “being self-critical to self-compassionate, coupled with an increased sense of agency.” This idea saved me; the idea that I could look at myself with compassion and love. All my mistakes were not me being a failure, they were examples of the way I am different and are opportunities for me to learn and grow and embrace that difference.

For me, the idea of self-compassion summarizes everything I know I want to share with women and all people with autism and everything I want other clinicians to understand about working with people with autism. Those of us with autism need to let go of our self-criticism and embrace self-compassion. We need to learn to love the way we think and adapt to a world that is different from us without changing ourselves or compromising ourselves because we are worthy of compassion and love. Every day now when I work with my clients on the spectrum, I want to say the same thing over and over: "Find self-compassion. Love the ways your mind is different. You are beautiful."