When I got my diagnosis of autism, it was like there was suddenly and explosive light that emerged in the darkness of all my mistakes. I am not broken. I am not just a bitch. I am autistic.
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 those questions without ever realizing that I had autism. I sat with autistic people and asked them the same two-hour long 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 9-year-old son recently what mommy gets stressed about he didn’t hesitate for a second before he said “everything”.
This 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 America 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 twenty 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. According to Leedham, Thompson, and Feeth (Autism, 2019), autism in women is a “hidden condition”. Females on the spectrum receive diagnoses in middle to late adulthood on average. I can not overstate the importance of my diagnosis to me from a psychological perspective.
I watched Hannah Gadsby’s Douglas twelve times and in it she describes getting her diagnosis as getting the “Keys to the Kingdom”. That is how I felt. I felt like for the first time I saw and understood myself in a real way. It was ground shaking. All my ruinous friendships, and tragic relationships, and victimizations, and tricks, 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? My self-loathing on this matter has been all consuming.
So, when I got my diagnosis of autism, it was like there was suddenly and 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 facilitate 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 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. We 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.
Jessica Penot, LPC is a counselor and writer who lives in Huntsville, Alabama. She is the owner of Tree of Life Behavioral Health and the author of ten books including The Accidental Witch and The Darkest Art. You can learn more about her at www.treeoflifebehavioral.com
Hi Jessica Penot,
Wow, I love your article!
I assume you read the one I wrote…
The first thing that comes to my mind is the following:
My wife Ayala came with me to all the interview sessions of my diagnosis, and after it all ended, we both told each other that the psychiatrist who diagnosed me was on the spectrum himself…
I assume it only helps him to be better with what he does. It makes sense that to understand an autistic person, you better be one yourself…
I assume it also applies to you and makes you better at helping autistic individuals…
The second thing I want to share is that your article makes me realize how diverse we are on the spectrum… Alexithymia is not my thing, and I have always been good at self-awareness… My self-awareness has always been much more than my awareness of the world… From day one, I took for granted that I am different… I took for granted that the world cares less about me as much as I care less about him… If I choose to, I feel I can read the emotions of others, but with effort… In one-on-one interactions, I can go deep, often deeper than this person can contain… It becomes overloading for me when dealing with more than one person, and I disconnect and take refuge in myself…
I clearly have both traits of autism: Social interaction difficulties and repetitive movements… Neurodiversity is indeed a great word to describe us: We are so different from each other yet have so much in common… Self-experience is my thing, which is one of the reasons I was early attracted to Buddhism, since high school, which is over forty years ago…
I definitely agree with you that self-compassion is the most important thing for us on the spectrum. Exactly self-compassion saved me again and again throughout my life when it was clear that I was left alone, totally misunderstood, without any hope of understanding… These are the moments I took refuge in myself. As you know, compassion is a big thing in Buddhism, and so is taking refuge in yourself. I truly believe (and know) that Buddha Shakyamuni himself was autistic (I wrote an article on that in “the art of autism”), which makes his teaching so potentially appealing to us on the spectrum… To survive in a hostile and alien world, I developed my own personal tradition and memories from early childhood to the point that I was often happy to be so different… Yet, of course, this being so different caused me a lot of suffering… The idea that suffering comes from within and can be resolved from within is essential to Buddhism and has been my insight long before I knew the word Buddhism…
While writing the book I wrote on Buddha’s life, it became obvious how much I identify with this extraordinary person… The abbot of the Tibetan Buddhist monastery I lived in one full year told me that he is convinced that my book is a recalling from my past life… I do not want to make such claims, but it definitely feels this way…
Anyway – thank you so much for your article, which resonated with my heart…
May all Beings on the Spectrum be Happy,
David Goren
Thank you for this. Buddhism has guided me to peace as well and your perspective is deeply appreciated. I will look for your book.
Jessica,
Big “Thanks”, and welcome! You’ve opened a bunch of doors and windows for me, and probably others here. You’ve made self-honesty a powerful tool for change again. Your courage is contagious, and I applaud your heroic spirit as you suddenly find yourself on the other side. Sounds like you absorbed the shock of the diagnosis fairly well mentally, since it provided a medical basis to some of your behaviours that you question, but was the emotional impact of being on the other side of the Autism table, traumatic in any way?
I’m sure there are many undiagnosed spectrum people out there, struggling with the same question, and needing to make sense of their troubled lives. Sometimes we lock eyes with another one of us, and we sense a quiet resonance, but we can’t identify it.
It has been hard in many ways. I have had to accept that my social isolation may never improve and that bonding with other humans will always be hard. I am difficult to normals. That is a lonely place to live. I also struggle with the loss of respect I get from some people and the judgement. My new project has been squiring a service dog to help with some of my larger issues.