Jackie Schuld Art Therapy Blog

Late-Identified Autism Interview: I Have Fought Hard to Value Myself

This is the 20th interview in my series Interviewing Late-Identified Autistics. The interviewee requested to remain anonymous. My questions are in bold and her responses are in regular typeface.

 

What is your name and pronouns?

I would like to remain anonymous. I am a 54 year old female. I use she/her. Maybe I would use “they” sometime in the future, but for now, I’m not changing anything external.


How old were you when you learned you were autistic?

I have been investigating the idea for about 5 years now.


Photo by Caroline Hezza, selected by Jackie Schuld

How did you learn you are autistic?

When I was in my twenties I was having a very difficult time with stress at any job. For example, I was working as a stylist in commercial photography, and found the stress of brutal deadlines, and lack of clear direction of what was expected of me extremely difficult. I learned through a boyfriend that my nickname was “squeaky” because my voice would probably get squeaky and high when talking to people in the studio because I was feeling so stressed. I found the book “The Highly Sensitive Person” by Elaine Aaron and greatly identified with her theory. She says that about 20% of the population has a sensitive nervous system and that we that have that naturally are going to pick up on more information around us, get over-stimulated easily, and require more rest. I have recently read a few articles where there are authors that are saying that basically, being an HSP (Highly Sensitive Person) and Autistic are the same thing. Anyway, that was my introduction into learning about, and accepting that my brain and nervous system could possibly be wired differently than the majority of people’s.


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

In my early 50s I asked a friend if she thought perhaps both us were “on the spectrum.” She basically said, "Yes!” I read a lot, took online quizzes, scored quite high on them, and basically have landed on a self-diagnosis.


How did you feel when you learned you were autistic?

I feel relieved, because I have been VERY hard on myself for my whole life. I have been perfectionistic, anxious around people, I’ve felt uncomfortable in groups, group living situations, I’ve had trouble keeping friendships, I’ve felt a tremendous amount of inner tension that never seems to leave

.

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

I’m not really sure. I am female and I have come to the conclusion over the years that I am bisexual. I have read that many folks that are autistic tend to be LGBTQA+. That came as a relief to me - I forced myself for years and years to appear “straight” - I am sure it is a form of masking, because confrontation makes me so miserable and stressed. I was just trying to fit in and not cause more stress, but in the end, it has caused me unhappiness, not to feel more out. It’s been tough on me - I thought for years that I would be rejected because of my sexuality and I probably still have a lot of processing to do around accepting myself. I am honest with people about it if the topic comes up.


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

I haven’t told many people. I did tell my mom. I started by talking about my father; I am quite sure he was autistic. I talked about traits he had, such as: verbal tics, he startled very easily, he was extremely uncomfortable in social settings, and hated small talk. He had two special interests that he talked about all the time, and never took an interest in our lives. I basically have told my mom over he years that I have a similar sensitive nervous system to him - I am very much like my dad, and my mom has seen that. Now that I am using the word Autism, and talking about going for a diagnosis, I am happy that she hasn’t seemed resistant. She has seen me struggle with chronic Lyme Disease - I had to move back home with my parents in my late 30s and still cannot work full-time.


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

Not yet. What I have done is work with brain retraining programs that work to calm down the limbic system and rewire the brain out of deep grooves of hypervigilance and worry.


How has learning you are autistic impacted your life?

So many ways. I’m working on being much gentler with myself. I still see myself comparing myself to NT people but now I am working on accepting that I have had so many internal obstacles that go with being neurodiverse. I don’t think the average NT person has endless anxious nightmares about having to travel with others and sleep together in the same room. I’ve had themes of dreams about not having enough space to myself - literal nightmares where I cannot get away from others. Now I understand on an even deeper level that there is no need to try to “overcome” this feeling or try to “train” my nervous system to handle this. If I simply need my own space and lots of downtime, and I always will, then I am willing to work to structure my life to provide that for myself. I currently live with a roommate. She is quiet and understanding, but I still hope to find a career that will allow me to support myself and be able to live alone, or, ideally, with a loving partner that deeply understands my need for space alone.


So I guess what I am saying is that, looking back at my young adulthood, I see how much I struggled - to be social, to be self-supporting (I worked at all kinds of jobs, including as a stylist in commercial photography). I struggled with anxiety, depression, and then several car accidents that were not my fault caused me to become extremely depressed, and then become chronically ill. It took about 10 years to have Lyme finally diagnosed; Chronic Fatigue Syndrome was the diagnosis for a long time. I have had that for years, but Lyme was really the culprit. People talk about autistic burnout, and I am wondering if that might have been what started the downward cascade for me into illness. Perhaps because I masked for so many years, it just exhausted my whole system, and I had no support.


Your Current Life


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

I’ve tried to let myself experiment more with stimming! I used to bounce my leg at the table, and I’ve always loved jumping up and down. I like to clap my hands, too. I love to sing, and I remember now when I lived alone, I would spontaneously sing nonsense songs and make up nonsense phrases and sing them to my cat. Echolalia? I think it’s called. I find that I seem to repeat the last few phrases I have said in a conversation, when I hang up the phone. My dad used to have whole conversations in the shower after work - perhaps that is part of Echolalia? Or the delayed processing of a stressful situation?


I see now that I have not allowed myself to stim much over the past 15 years, actually, and I find it embarrassing to do with people around. I hope that can change. I love to lie in bed and rub my bare feet together. I’ve always been particular about fabric and textures - I either seem to love or hate them, so I am trying to find those that I love, and embrace them. At times, I’m letting myself eat the same things every single day, if that is what I feel like doing, without any judgment.


Photo by Katerina, selected by Jackie Schuld

In what ways does being autistic enhance your life?

I think it GREATLY enhances my life in so many ways! I am a good singer, and notice and can mimic nuances in vocals that I can imitate. I see details so easily, I am so easily entertained just looking at things like trees, anything beautiful in nature, or art. I love natural things like wool, feathers, leather, high quality art paper, inks, graphite, and more. It helps my art - I have been making art since I was a kid; I majored in it in college. It helps me cope with life to know that I am a “maker of beauty”. I love refined things and can spot them easily, like when I go to thrift stores. I am deeply empathic and while I get tired easily, I think autism helps me to sometimes conclude what the “essence” of a person is all about. I may be easily fooled by their motivations or actions or words, but I seem to get an accurate “read” of them when I meet them, and that may have something to do with the ability to read patterns.


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

I get super nervous talking to people I don’t know. And often, even with people I do know, LOL. I feel like they are judging me or find me “weird.” I often have that feeling of being uncomfortable in my own skin, so that has been challenging; it has historically been so hard for me to relax. I grind my teeth; I have since my early 20s, and have really tried to dig to see if that is also a part of autism. I have finally found that on a list of traits. I don’t often see it listed as a symptom but I would love to know if others struggle with that. It has greatly impacted my health; my gums have receded badly and I have major bone loss in my jaw because of it.


Other challenges - I have felt so “reactive” in life - it has been SO extremely difficult to imagine a future, to make concrete plans and goals and just go for them. I always knew I wanted to go to college when I was little. I was adamant about it. I did go to a prestigious school. I graduated with honors and even as a Phi Beta Kappa. Now in my 50s, I just seem to have no clear ability to guide myself to a productive and safer future. I only have one supportive relative - my mom, and she is elderly. I know I need to make a plan for myself - I just don’t seem to know where to turn.


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

I get so exhausted talking to neurotypical people because I’d much rather talk deeply about a subject and they seem to just be happy to “hang out.” They seem comfortable for the most part just showing up as who they are ( I am sure they “mask” a bit too, to be seen favorably”) but I notice I have scrambled to try to be the person I think they want me to be - so it has been just exhausting trying to figure out how to please them, so as to feel safer around them and avoid conflict. I am working on changing this because I realize it is so unfair to me. I should be able to feel a bit more comfortable being direct. I grew up talking in circles because I am sure I noticed that it is not well-received for girls to be direct, and to not smile, etc. I notice I have a nervous laugh sometimes and I am sure that is from the stress of masking. I think I tend to “overexplain” myself, my feelings, my thoughts, because I am so unsure of how I am being received. I have a friend that jokes with me that I “like to tell the long version” of things. At least he thinks it’s funny!


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

Well, having Chronic Fatigue Syndrome and Lyme Disease have had a major impact in my life. It interrupted any career path for about 20 years, and it’s been difficult to date. I am working now on finding more people like me - I need the support. Because I had to go on federal disability, I have had to live very “under the radar” on social media, etc. because I need the benefits and can only work part-time in a low key retail job. I don’t know if it would help me in any way to get a diagnosis so late in life in terms of help with finding a better career.


If you work, what do you do for work? How does your autistic identity impact your work?

As I mentioned, I work part time in retail at the limit I am allowed to for my disability benefits. Actually, my autistic identity is great for my position at work! It is a niche market in the organic industry. I am able to spot mistakes in all of the paperwork, and at times that has saved thousands of dollars. I am good at correspondence, so my boss sometimes has me craft email responses for customer service issues. I am really good at working with customers one on one; luckily this is not a busy shop, it is not a typical retail place. Customers often do comment that they appreciate my depth of knowledge and expertise. Sometimes I can feel short with them, if they are not following what I am saying. I have to look away and just stay calm, and re-state what I am saying.


Is there anyone else in your family who is neurodiverse?

As I mentioned earlier, I am quite sure that my dad had Asperger’s or, simply had ASD as it has now been revised. I am now wondering if perhaps my grandmother was autistic as well.


What helps you prevent or cope with moments of overwhelm?

Rest in bed with a darkened room. Or if out of the house, closing my eyes, pressing my fingers on my eyelids.


What skills or strategies have helped you to work with your autistic mind?

Meditation, singing to disperse energy, allowing myself to zone out on Netflix to just “dump out” whatever I need to, or, conversely, letting myself research something, for as many hours on the computer as I like, that has caught my interest at the moment - it seems to calm and focus my mind.


What accessibility/support have you sought since learning you’re autistic?

I have not sought any specific support yet.


What support do you wish was easier to access?

Not much yet, I seem to still be researching. I would really, really like to find someone who could diagnose me that is not biased against working with someone that is older, and female.

How have you self-advocated for your needs?

I’ve started to self-advocate by simply trying to be more true to myself. I am working up to being able to say things to people like being loud or crude around me is extremely stressful to me. It’s hard, it’s slow going.

How does your autistic identity impact your friendships?

I think it has impacted them badly in the past because I wasn’t a good advocate for myself and my needs. I wasn’t firm about boundaries - like advocating for my sensitivity. I hated conflict, and wouldn’t fight or speak up in the moment of conflict, and many times the whole friendship exploded when I had finally had enough. I wasn’t taught to value myself as a sensitive person, so I tried to downplay that, and pushed myself too hard to be more like extroverts and neurotypical people because that was the “norm” and I didn’t value myself enough. I am learning to change this. I has been hard - I was called things like “clueless” and “fragile” in the past. I had friends I clung to when I was young - I am sure I was trying to mask, and learn from them, and navigate how being a girl is supposed to look.


I was friends with an actual bully in childhood. When I had an awful fight with her in middle school, I became so stressed out that I ended the fight and asked to be friends again. When she replied, “Well, I GUESS we be can friends again,” that should have been my clue to not return. It wasn’t until college hat I really understood how cruel she was; that she used people. She went on to be a very successful magazine editor. I was haunted in my dreams by her - like an internal tormentor, throughout my twenties, because part of my brain still thought I was inferior to someone like her. I have fought hard to value myself and to see her for who she really was, so the dreams have lessened over the years. They have resurfaced lately, but the dynamic seems different - I seem to be trying to learn from her in some way.


How does your autistic identity impact your romantic relationships?

I think it has significantly impacted them much more than I had realized. I think I put walls up because I was too afraid of engulfment, of not getting enough alone time, rest time, and studio time. All of this requires self-confidence, and self-empowerment to stick up for what I truly need. I am working on this - it’s about negotiations and setting firm boundaries for what I need. I did a lot of “retreating” from partners because of the extreme overwhelm that would set in, even though I yearn for intimacy.


What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?

I have had horrendous experiences with mainstream medical systems due to having Lyme, a poorly understood chronic illness. I am sure the entire system could be improved for people with Autism. Unfortunately, as it stands, neurotypical people seem to have residual scorn and resistance toward people they think are somehow “weak” and cannot just “bootstrap” themselves back up quickly. Thank God awareness is rising for Autism.


Your Past


How did being an undiagnosed autistic child impact your childhood?

I either clung to one or two friends or spent the majority of my time alone in my room, reading and exploring. I also obsessively tried to clean the house after school because it was so cluttered and dirty and I was always trying to make it better. My friends made fun of me for it.

What ways did you camouflage or mask?

I think I constantly masked! I must have studied other kids and tried to just fit in.


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

I have such deep sympathy now for that poor little stressed out girl!


How did being an undiagnosed autistic impact romantic relationships?

I think I tried to be whatever I thought the other person wanted me to be, much more than I realized. I did sometimes show up as my authentic self, thank God, but after a point, I remember breaking up with someone neurotypical, and he said a very hurtful thing - “You have so many problems!” It was so cruel and unnecessary to say; I was aware that I had problems and was searching for answers that weren’t coming easily.


Talking to Others About Autism


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

I haven’t had much experience with this yet. I think I would tell them, look, it is simply a matter of being “neurodiverse” vs. being “neurotypical” - an autistic person’s brain may take longer to process information, but they can come up with a much deeper, more nuanced response to a problem, for example. I would also be sure to dispel the myth that autistic folks have no empathy. That may be true for a subset, but also, there are MANY, many neurotypicals these days that seem to have absolutely no empathy. I think autistic people do have empathy; it may not show up in a facial expression, but it is definitely there.


I would tell people that autism is simply a different type of neuronal wiring in the brain that research is still uncovering, and that autistic people are sensitive, intelligent, and often can work in areas that NT people would get bored with or do a sloppy job on - autistic people are highly conscientious.

What do you wish others knew about autism?

All of the above!


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

To read and research like I did!


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

Since I’m not officially diagnosed, I don’t know.


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

I found the book “Women and Girls with Autism Spectrum Disorder” by Sarah Hendrickx to be extremely helpful. The Facebook private group ASD Village is warm and welcoming.


Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?

I don’t know! I have really enjoyed the series “Atypical” on Netflix, but I am unsure how accurate it is. I am also enjoying “Extraordinary Attorney Woo” on Netflix quite a bit.

 

Thank you for reading. It’s my goal to reach 100 interviews. If you are a late-identified autistic, I would love for you to participate in this series. Please email me at jackieschuldart@gmail.com if you are interested.

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