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This is my 3rd interview in my series Interviewing Late-Identified Autistic Folx. For this interview, I provided a list of questions and the individual decided which to write responses to. The individual requested that they remain anonymous. My questions are in bold and the interviewee's responses follow in regular typeface.
How old were you when you learned you were autistic?
I learned I am actually autistic ten days after my 71st birthday! A few months ago, though I’d had brief intermittent speculations about the possibility for decades, which I refused to follow further.
How did you learn you are autistic?
It was an extended process, with many steps leading up to a final “aha!” moment.
A few years back, I made a new friend who revealed her own neurodivergence to me, and we began to talk about it. After some recent conversations that pointed me in the direction of seriously considering whether I might be autistic, I read some memoirs by autistic women.
And I had what I now know is the very common late-diagnosed autistic experience of thinking, “OMG! That is me!”
At that point, I found and took a number of validated online autism tests. Every single one came back scored with some variation on the theme of “you are probably autistic.”
So I took them all again :-) to make sure there was not some kind of mistake, and of course, the results were essentially the same. But I still wasn’t ready to accept it. I clung onto the margin of error expressed in those “probably” statements.
The final event that made everything clear occurred as a result of weeks of ongoing construction noise right outside the condo where I live. I found the sounds and vibrations beyond irritating, and one particular morning when it was especially bad, began to feel a full fight-flight system activation.
In a terrified phone call with my neurodivergent friend, I told her that I felt like I was going to come apart (I know now I was probably on the verge of a sensory overload induced meltdown), and begged her for some ideas to calm and comfort myself, since I was so torn to pieces by the sounds that I couldn’t even muster the skills to leave home and get away from the noise.
She suggested that I try placing deep pressure with my hands on my shoulders, neck, the tops of my thighs. And when I put that deep pressure on my thighs, my body suddenly remembered who I really was. More or less involuntarily, I began to rock my body forward and back as I sat. I heard my mother’s voice in my head saying, “Stop that! You are too big for that!” Suddenly I was flooded with the memory that I’d done this rocking as a child, and that I’d been taught it was wrong. And I was filled with other memories I’d repressed, memories of experiences that I now knew matched those of someone autistic. I began to cry, which is something I almost never do.
And that was when I accepted fully and completely that I’m autistic. It was like a part of myself that I’d previously buried suddenly opened up, and now I had access to it. I finally knew and accepted who I’d always been.
How did you feel when you learned you were autistic?
When I got through the initial shock and let it all sink in, “the heavens opened and the angels sang,” figuratively speaking. It was like being struck by lightning. The first thing I felt was a sense of being suddenly whole. And as I’ve learned most late-diagnosed people do, I experienced a profound sense of relief. At last, my life made sense. Finally and suddenly, the self-blame for all those frustrating, inexplicable failures in my life dropped away, and I could see that I’m not broken. Joy has been my major reaction!
Which is not to say that it’s all been positive. The first week or so was also very scary at times, like looking into a bottomless abyss, an explosion of my sense of self where the pieces had not come back together in their new way yet. A couple of months later, I am still integrating this new identity.
I’ve also had a few times of despair and hopelessness, with a sense that since I’ll always be autistic, many of the difficulties I’ve dealt with will probably never go away. Grief for the pain of the autistic little kid and teenager who I was, who didn’t yet have the tools to deal with the neurotypical world, and didn’t understand why they were so excluded.
And integrating this new understanding of my identity has taken a lot of mental effort, despite the fact that it feels right and good. I’ve often felt very tired!
How have you modified or adapted your life since learning you’re autistic?
It’s mostly been careful, considered, unmasking.
The biggest adaptation is that I now allow myself to stim! After the “breakthrough experience” I described above, I’ve been able to mostly discard my no-stim conditioning in private, and to some degree when with others. I’ve sadly had to relearn which stims work best for me, so I’ve tried on a lot of different ones I’ve learned some autistic people do.
Besides its helping me cope with stressful situations, I’ve been reawakened to just how good stimming can feel in and of itself, the joy and sense of coherence that it brings, the way my whole brain and body seem to “light up.” This is hard to explain in words, but I’m pretty sure any autistic person knows what I mean. I’ve heard the term “autistic euphoria”--yes!
I’ve also mostly stopped forcing myself to make more eye contact than I want to, and am trying, with variable success, to stop monitoring my facial expressions and gestures and worrying about them.
Finally, knowing I’m autistic has given me self-permission to leave or check out of situations where I’m experiencing sensory or social overload, rather than thinking I need to stay there, inwardly trembling and suffering because I “shouldn’t” feel that way.
What ways did you camouflage or mask?
I’d completely repressed stimming by about age 6 or 7, due to the intense negative feedback from my family. For much of my life after about age 10, I mostly hid the intensity of my interests. At some point in my young adulthood, I realized that eye contact was expected, and I began to do it, though I found it unnatural and uncomfortable; still do. (I vividly remember my mother saying, “Look at me when I talk to you!” and not understanding it at all, since I was clearly looking at her– I just wasn’t looking her in the eye, which was what she really wanted.)
When I was 17, I was chosen by my school to spend a week away on a college campus participating in a mock “state,” a political education exercise. I resolved that I was going to be a different person there where no one knew me, and carefully studied and copied the other girls. It was so successful that I began to mask and camouflage the real me in the other parts of my life, which I continued into my university years and far beyond.
For decades, I carefully and consciously played roles that I thought fit for each situation, no doubt influenced by my high school acting career, and feigned interest in topics that were actually insanely boring and meaningless to me. I monitored my facial expressions and body movements, holding back what felt natural to do and copying what I saw others do and say. I paid attention to my physical appearance, trying not to deviate from what I saw as the standard, trying to make a good impression, even though deep inside I couldn’t see the value of fashion, makeup, and the like.
When sensory issues arose, I learned to dissociate so that I wouldn’t experience the discomfort. (Of course, that had an extremely negative effect on my whole existence, because I became detached from my life’s potential joys as well.)
Are there any resources you would recommend for people who just learned they’re autistic or are exploring if they might be autistic?
In both situations, if you are an autistic woman, or AFAB, and like getting information from books, I highly recommend the following:
Nerdy, Shy, and Socially Inappropriate, Cynthia Kim (also her old blog, musingsofanaspie, though she discontinued posting on it about 8 years ago)
Pretending to Be Normal, Liane Holliday Wiley
Autism in Heels, Jennifer Cook O’Toole
Divergent Mind, Jenara Nerenberg (also talks about other neurodivergences like ADHD)
For older people of any gender, I recommend
Older Autistic Adults in Their Own Words: The Lost Generation, Wilma Wake, Eric Endlich, and Robert S. Lagos (this book moved me deeply, as I recognized my own experience in the words of others in my generation)
Website I found very helpful:
https://embrace-autism.com/ (contains links to several validated tests to help you determine whether you’re autistic, and many good articles on both embracing your autistic identity and dealing with some of the difficulties that come with it)
And follow authors posting on the topics of autism and neurodivergence on Medium.com!
If you’re autistic like me, and love to take the deep dive into a topic, I know these would be only the beginning!
All good wishes for your journey.
May people contact you if they'd like to speak with you?
I have decided to add a new email contact address if anyone wants to get in touch with me. I've created it specifically for that purpose: iwasneverbroken01@gmail.com
Thank you for reading. If you would like to be interviewed about your experience as a late-identified autistic individual, please email me at jackieschuldart@gmail.com