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Jackie Schuld Art Therapy Blog

Living with My Spirit Facing Outward: A Late-Identified Autism Interview

This is the 46th interview in my series Interviewing Late-Identified Autistics. Tammi is a late-identified autistic. My questions are in bold and Tammi’s responses follow in regular typeface.

 

Tammi

What name do you use and, if you want to share it, what pronouns do you use?


Tammi (she/her)


How old were you when you learned you were autistic?


I first considered that I was autistic in my late 30s. I am now 54.


How did you learn you are autistic?


This is a long story, but some of it may resonate. My oldest son was diagnosed with autism when I was 36. I read lots of books, especially first-person accounts of life with an autistic family member. The book “Pretending to be Normal” by Liane Holliday Willey dealt with a mothers’ realizations about her own autism. It was the first time I could see myself represented.


A few years later, I was struggling with personal functioning and care for my two sons. In trying to understand what was going on, among other things, I sought an assessment for Asperger’s Syndrome. My diagnostic test results were indicative of Asperger’s. They said that I appeared to be functional and communicative. The report notes that I said I was bothered by the squeaking of the card table legs during testing. When I had to arrange little blocks to match pictures on cards, I told them it “hurt to look at the corners of the blocks and my ears start ringing.” Also, I said I was “freaking myself out by my ability to recall long chains of numbers going backwards”. At the time, there needed to be issues present before age the age of 7 to be considered. Unfortunately, at the time I could not remember much of anything from my childhood, so the idea of a “diagnosis” was put aside.


In my 40s, I had relocated to another state. My new psychiatrist’s impression was that bipolar disorder was the driving issue. That never completely made sense to me, but the medications helped, and my focus was on meeting the needs of my sons. Last spring (at the age of 54), a situation triggered emotional flashbacks to my childhood. My lifetime of sensory issues, repetitive behaviors, social patterns, communication difficulties and soothing mechanisms became clear, and here we are.


How did you decide whether to self-identify or diagnose?


I went back and forth about this. The writings of other late diagnosed women have affirmed my self-identification. In the end, I decided to have a diagnosis written. It will give me a layer of protection in the medical realm if/when I ever must change psychiatrists, involve new doctors, etc. I do not want to convince or debate a doctor about this from the ground up ever again.


How did you feel when you learned you were autistic?


At first, I felt very sad for the little Tammi that felt so outside from everyone and everything going on around her. Now, I feel lighter. There are ways I can try to make my existence more stable. There are people I belong with. I am not the only one that has superhuman hearing and smelling!


How do any of your identities (ex. gender, race, religion, sexuality, etc.) impact your late identification as autistic?


Being female meant my issues wouldn’t be attributed to autism until the late 1990s-2000s.


How did your friends and family respond when you told them you are autistic?


I am figuring out how to be open with my closest friends. They are fascinated and want to understand. I am learning to be more comfortable dropping my mask! I am working to find better ways to explain what autism means for me.


My ex-husband and I had often talked about the likelihood of autism in our family histories, so it wasn’t a stretch for me to voice my self-identification.


Did you seek out therapy, coaching, or other forms of structured support for autism?


My therapist can give me tools that work to help me better manage my life. I am ready to face my challenges. It is time to stop the negative self-talk. No more people-pleasing in exchange for being allowed to coexist with others. Repeat those two sentences.


I even get to smile when “that’s my autism” explains a pattern I’ve repeated my whole life. I can embrace the pattern if it does not harm myself or others, or adjust how much I allow the pattern to become a dominate feature in what I am doing.


How has learning you are autistic impacted your life?


I can now face the needs and building blocks that are my responsibility to develop. I can slow down, take care of myself, and do things that are in tune with my brain and body. I strive to live in an environment and with people that do not complicate those goals unnecessarily. I am an open, joyful, deep-thinking person at heart. I want to live with my spirit facing outward, not hidden within!


The online community that I have found has been very affirming. I hope the growing network of us will continue to learn from each other and share our stories!


Your Current Life


How have you modified or adapted your life since learning you’re autistic?


I am paying attention to my environment and my body signals. Noise affects me greatly. I have several sets of Loop™ earplugs for going to stores, air travel, car rides, sleep, times when my house just feels “noisy.” I need time in solitude. I created a “cocoon” area in my home with lots of pillows and blankets where I have books, earbuds, sketchpads, journals, and all kinds of colored pens within arms reach. I realized that time in water stabilizes me. Baths, swimming, and finding a creek to put my hands and feet in are all good for me. Time outside in nature settles me down. Rubbing soft things and seeing sets of smooth things are grounding for me. I have found wearing a fidget ring helps me do better in social situations with conversation is needed. It’s been fascinating to experience how these things can help me be less on edge and anxious.


In what ways does being autistic enhance your life?


I am noticing more how richly and intensely I experience things with my senses, emotions and thoughts. I am beginning to utilize my creativity in art and writing to capture these feelings.


What are some of the challenges you face in being autistic?


I am driven by deep dives into special interests. I love that part of me, but in the past, I felt like I was riding on the back of the many tigers of my special interests. When it got to be too many or when the interests would fade, I would feel defeated and depressed and a failure. Now, I understand that I will always have that drive, and I can choose carefully when to jump off or when to keep riding a tame tiger!


In what ways have you noticed you’re different from neurotypical people (behavior, preferences, communication styles, etc.)?


A String of Game Code and the Commodore 64

First, let me share a behavioral example from an old memory. I was 14 years old and had saved up enough money for a Commodore 64. I had a subscription to COMPUTE!’S Gazette. There was always a “featured game” in each issue, and they even included the machine code for it if you wanted to type it in. Well, I was going to type in all of those numbers and have myself a video game. I remember spending days upon days moving my ruler up and down the page. I don’t think I remember there being a way to proof it, I was just hoping to not mess up a number! Eventually, I finished and although I had hoped, I wasn’t surprised that it didn’t run I don’t think that was a neurotypical girl activity at the time (and investigating my memory to find these pictures was a hyperfocus moment, as well)!


Chicken Pangea

Secondly, I have a more recent observation along with a question for you.


When making chicken pangea, I ask you, do you just throw your chicken into a baking dish willy-nilly, or do you strive for the best fit, as if you are realigning continents, like I do?

Ha ha!


Do you experience any other mental or physical differences (including disabilities, other neurodiversities, etc.) that impact you? How have these influenced your autistic journey?


I am also affected by C-PTSD. I am learning how my early childhood trauma responses fed into my masking and camouflage survival behaviors that could be attributed to life with ASD at home, school, and beyond.


Is there anyone else in your family who is neurodiverse, autistic, or otherwise?

Yes, my son and likely some of his grandparents are on the autism spectrum.


What helps you prevent or cope with moments of overwhelm?


Routine and a balanced schedule help me keep my nervous system from building up to a state of overwhelm. To cope with specific situations, I will use grounding techniques (meditation and hypnotherapy apps) and distractions (reading and familiar TV shows).


How does your autistic identity impact your friendships?


Looking back over time, I have never “kept” any friends from one phase of my life to the next. I would typically have one or two people that I would interact with deeply, but I was definitely masking myself to appear more interesting, fun, or worth hanging out with. If I was among groups of people, I would find my place in a physical corner or attached to a safe person and pull out my cynical sense of humor to make observations that others wouldn’t typically catch. It felt like more of a performance than a shared conversation. Over the past 6-7 years I have maintained a few deeper friendships out of connections through my youngest son. I hope to build on these more authentically and reciprocally now.


Your Past


How did being an undiagnosed autistic child impact your childhood?


I lived entirely inside myself as a child. My family circumstances were such that there was no one to attempt to bring me out of myself or help me integrate with other children. This compounded until high school where I was able to camouflage and mask enough to allow people to let me hang out on their periphery. I wasn’t ever sought out as a friend, but I could attach myself to their groups.


How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?


As memories come back to me, some make a lot more sense now. I am in the process of looking at my childhood and my parents in a different light. I know that I have been a present parent to both of my boys to the best of my ability. It gives me pause to contemplate that I was a child who was not understood or helped to integrate with others, but that it wasn’t necessarily something my parents were capable of doing under the best of circumstances. So, it is a time of finding closure and moving forward for me.


Talking to Others About Autism


How do you describe autism to people who are not familiar with it?


Pie Chart Spectrum by Claire Jack, PhD

I try to describe how my brain is different. Inputs may be heightened or suppressed. Inputs may also be processed differently. As a result, I may become overstimulated or stuck depending on the situation. Those conditions can then present challenges to meeting responsibilities of communication, social participation and living skills. My brain has developed its own survival responses, which may or may not be making things worse!


I have found this pie chart spectrum helpful to show the different areas of challenge for autistics. This chart helps me to have a conversation when someone wants to have a deeper understanding of how autism affects me:


by Claire Jack, PhD, August 16, 2022


* If an area feels okay to you, score it as 1. 10 represents an area where you have extreme challenges.


What do you wish others knew about autism?


  • That the range of impact is great, from those of us who have assimilated in a neurotypical world to individuals whose bodies are not stable and who do not have communication methods or living skills.

  • That everyone deserves a chance to find their version of peace.

  • That sensory issues are so important and so unique to each individual and can vary by environment, time of day, or color of the sky. Learning to be aware and attuned to you/your loved ones' signs of dysregulation is a gift.


What is your advice for someone who thinks they might be autistic?


Write down your feelings and observations. Pay attention to yourself over a period of time within your regular routines. Think about the times that have felt both good and bad within your past. Find people (online or in person) to help you discern your situation.


Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?


As a late diagnosed adult, I have been helped by reading other people’s writings on Medium that let me know I am not alone in my experiences.


The most recent book I have connected with is Women with Autism by Claire Jack, PhD.


Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?


I would recommend the Embrace Autism website and the book, I Think I Might be Autistic, by Cynthia Kim.


Are you involved in any forms of autistic activism?


I’m not involved with autism agencies specifically, but my son is now an adult trying to find his way to exist. I support the local non-profit agencies that have been supporting his daily living and work placement needs.


Connecting with You


If someone would like to connect with you, how can they reach you?


Feel free to email at T.happytrails@gmail.com. Also, on Medium, my username is HappyTrails. I have built a public list there called “Adult Autism-me” where I have gathered and saved stories for over a year that were relevant to my autism journey (my rabbit holes)!

 

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