For too long the face of autism was a white cis male. Thankfully, with more research into the female phenotype, that’s changing. As a result, more girls and women are being assessed and diagnosed every day, and in the case of women like me who were diagnosed later in life, the effect is transformative and often healing.
But these things take time, and there is still far to go before the average person understands the dichotomies of autism as they relate to gender.
In this series, I host a Q&A with a fellow autistic woman. I want to shed light on a variety of experiences and presentations.
Today’s guest on Ask an Autistic Woman is Kathleen.
Tell me about your path to diagnosis.
It actually came as an unplanned surprise when my son was 3 in 2014—I was 32 years old at the time. We were going through the process of getting him diagnosed through his neurologist and psychologist, and it was the neurologist who pulled me to the side and began to ask me certain questions about my own experience. After a brief consult, he said, “Well, mom, it would be good to see where you land on the spectrum. Because it’s genetic and you have most of the traits.” When I spoke with his psychologist next, he asked a few more questions and then confirmed what the neurologist told me.
For the longest time, I struggled to come to grips with it. I’d been so brow-beaten into masking my whole life that I thought they were mistaken. However, as I began to peel back layers and delve into traumas I’d experienced throughout childhood forward (especially in social and educational or workplace settings), I realized they were right.
When I finally allowed myself to accept it, it was like a heavy weight had been lifted off of my entire body. Like I had previously only been playing the part of myself in my life in a very scripted and exhausting way without any supports for my sensory issues etc. I came to understand there was never anything inherently “wrong” with me, and that I was in fact exactly as I should be.
What do you like about being autistic?
Everything. Can I say everything? Honestly, after a decade since coming to learn that I am on the spectrum, I’ve done the rigorous work of unmasking, leaning into my special needs, learning to speak up and ask for supports where I need them, and caring for myself in ways I never had before. I have since built advocacy into my career and have never looked back. It is intricately part of my identity and I wouldn’t have it any other way.
What do you struggle with?
That’s a long list. If I were to say it in a blanketed way, I would say “adulting” is the hardest area for me. Everything from personal finances to house chores. I tried having a bank account when I was 18 but that quickly faltered. I did not open a bank account again until I was 37 years old and still needed help from my parents and later my husband in order to manage it.
Social interactions are generally uncomfortable for me. I was relentlessly taught to look people in the eye when they are speaking, so at times the internal reminder to stay looking in their eyes becomes louder than what they’re saying and diverts my attention. I have an audio processing disorder and struggle to listen when there are crowds or loud music etc. I have to watch TV and movies with the closed captions on as a result of this. I also suffer from echolalia, which can be extremely distracting (to the point that I’ve had to pull the car over during some episodes). I also at times struggle to remember faces (prosopagnosia) and it can be disorienting when people I’ve apparently met a few times come up speaking to me like we know one another well and I can’t make out who they are.
I have come to embrace my sensory supports, like my soft ear plugs, favorite jacket and clothes… My lovely parents gifted me a weighted blanket that I now wonder how I ever lived without. I have an emotional support animal, my dog Evan Jeter, who is my shadow and constant companion. He naturally lays his body across me when my anxiety spikes (he just knows). And I feel such relief when he goes about in public with me as a service dog. I keep natural daylighting through my home and very seldom have the artificial lights fully on. I’ve opted for softer lower wattage lights and will choose candlelight when I can. I keep electronics off unless I am using them so the electricity sound doesn’t drive me and my son crazy—we use our ear plugs otherwise and that definitely helps.
What has improved since your diagnosis?
My overall sense of self, the grace I give myself when I’m having trouble acclimating to neurotypical conditions, and my joy. I do my best to make sure most things are no longer forced, and this has brought me such peace and relief.
I would even go as far as to say people treat me better. By this, I mean I used to get treated like “the weird kid” or bullied and called out for my quirks, for being matter-of-fact in my speech or taking things in an overly literal manner, and ostracized. Now, once I’ve explained that I am autistic, folks tend to smile and meet me with compassion and even get more curious about me, asking me about my experiences. I find I am more included and genuinely valued now by my neurotypical peers in the creative and business communities of which I am a part.
What would you still like to change (this can be about yourself or the wider system)?
There is so much work to be done in changing the ways that society, the education system and the workplace hold space for, support and empower the autism community. My main focus in much of my advocacy nowadays is centered around pioneering a more compassionate and supportive work environment for those of us on the spectrum and living with other disabilities.
My global publishing firm, PEPPER Magazine, was in part designed to be a safe space and workplace for this community. It is autist led, with several neurodivergent staff members on the autism and ADD / ADHD spectrum. As we continue to grow, I will implement more and more accommodations and create protocols that serve to elevate the work experience and provide a better quality of life for those who are employed by PEPPER.
Can you tell me a bit about a special interest you have right now or have had in the past?
Psychology and anthropology have been strong niche interests for me since I was a young child. It’s resulted in my going into the mental health sector as an intuitive life coach, and working within the field of journalism and photojournalism as a documentarian for almost 25 years.
I’m an artist and I’m constantly shifting interests in various mediums. What I seem to go back to most is mixed media collage.
What would you tell your pre-diagnosed self if you could?
There is absolutely nothing wrong with you. You are exactly as you should be and there is even a name for it. Don’t mask! Don’t ever dilute yourself for others or minimize your experience—ask for help with all those things that bother you and set your anxiety on fire. You deserve to take up space exactly as you are.
I hope you enjoyed this Q&A. If you would like to be featured as part of this series, please contact me. I’d love to share your story!
Absolutely loved reading this interview! It felt so nourishing and organic and really helped me to feel safe as I continue on my own journey of un-masking, thank you for sharing this awesome interview. 😊