Jackie Schuld Art Therapy Blog

Late Identified Autism Interview: I Feel a Bit Cheated to Find This Out so Late in Life

This is my 13th interview in my series Interviewing Late-Identified Autistics. Millie Phillips is a late-identified autistic. My questions are in bold and Millie’s responses follow in regular typeface.

 

How old were you when you learned you were autistic?


It was a gradual process. In my mid 50’s I read the book Look Me in the Eye, by John Elder Robison, and even though his skillsets and gender were different from mine, I felt a strong kinship and began to suspect I was on the autism spectrum, too. A few years later, I “retired” and went to seminary, where I took a pastoral counseling course. We read the DSM. In the description of what was then called Aspergers, I saw myself as a child, though not yet as an older adult, since I did not know about the adult phenomena of masking. I kept reading on the subject and two years ago, at age 65, I started seeing an autism therapist and attending a support group for autistic professionals. So here I am at 67, now convinced, though still self-diagnosed.

Photo by Stephen Kraakmo on Unsplash

How did you feel when you learned you were autistic?


Relieved. Finally, I had an explanation that rang true for negative experiences and allowed me to move to self-compassion and acceptance, rather than shame and self-blame for all the ways in which being perceived as abnormal triggered others misplaced assumptions and abusive and critical reactions. I also felt some sadness. I spent a lot of my life very depressed and filled with anxiety and self-hate. I’m now old, so I wonder how much time I have left to finally emerge as my authentic self. I feel a bit cheated to find this out so late in life.

How has your identification as autistic changed how you view your

adulthood?


I have way more self-respect since recognizing that there was an objective reason for my difficulties that was truly not my fault. Throughout my adult life, I became increasingly competent and effective in all sorts of outward ways, but I still felt defective and ethically inadequate, and believed I was morally obligated to atone by working twice as hard to compensate for harming others with my deficits, and thus I should be grateful for achieving half as much (and I wasn’t truly grateful, which made me feel even more sinful). Now, I respect how hard I have worked; how I kept reinventing myself after each defeat and rejection and disappointment.

How has learning you are autistic impacted your life?


Mostly very positively. My life-long fascistic self-critic has shut up. Now, when I react to something in an autistic way and it bothers someone else, I just take note and make conscious decisions about what I want or need to do with that information, rather than beat myself up. Finally, I am no longer masking to myself. I get who I am, and that gives me choices I never had when I didn’t understand why I was having difficulties. My self-confidence has radically improved.


In what ways does being autistic enhance your life?


I don’t think it enhanced it much before knowing. But now I see some of my most positive traits as likely connected to autism, such as honesty, managing tragedy and danger effectively, being able to focus on one thing for a very long time, and, especially, my affective empathy, which is reflected in my life-long passion for social justice and sense of solidarity with all who suffer abuse. Also, I’m no longer feeling ashamed of my quirky hobbies and “guilty pleasures.” They make sense now. So what if frequently re-sorting my huge quantities of jewelry and jewelry-making supplies seems weird, if I’m enjoying the calm it brings me after a stressful day?

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


Poor cognitive empathy: I’m not good at recognizing or interpreting social cues, a real problem when such cues are intended to nudge me to act differently than I am in the moment. I forget names and faces easily and generally have a very poor memory, a problem for a minister and social justice organizer.

Sensory overload: I can’t stand competing noises or other excessive sensory inputs, and sometimes have panic attacks when exposed to them. Being confronted with too many tasks, interruptions, or contradictory instructions can do the same.

Handling distraction and pacing: I can only focus effectively on one task at a time and experience a lot of anxiety when I need to shift tasks involuntarily. It’s hard to pick up where I left off. Sometimes, I don’t hear or see some inputs at all if I am focused on other things, a kind of hyper-focused tunnel vision. I get very anxious if I can’t do tasks my own way, so I can melt down when confronted by micromanagers. It takes me longer to make decisions than others would like, because I want to explore systematically all the pros and cons.

Literal language: I hear words very literally and constantly need to question, interpret, and translate in my own head. I’m terrible at following instructions because allistic people often leave out steps, don’t write/speak exactly and sequentially, and use words that have slightly different meanings interchangeably. A lot of humor confuses me. When people don’t understand me, I tend to repeat myself, which others find very annoying.

Emotions: I often have delayed emotional reactions to disturbing events or reactions perceived as insufficient, excessive, or inappropriate. I can handle the big stuff (deaths, disasters, physical danger, injuries) better than most people, but can fall apart over small stuff, experiencing occasional meltdowns and, more often, depressive shutdowns.

Physical traits common among people with autism: IBS, reduced fine motor skills, issues with balance and posture, clumsiness/reduced proprioception, very sensitive and itchy skin, subtle stimming.

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


As a different kind of neurological wiring. There is evidence of more connections than typical in some parts of the brain, but maybe less connective wiring between them. Generally, it shows up as difficulty interpreting social cues, thinking in rigidly logical ways, hearing language literally, doing things in very specific sequences, experiencing anxiety if have to change routines, being easily overwhelmed, having intense interests in certain topics, sometimes engaging in visible stimming, and having little cognitive empathy but often greater affective empathy.

What is your gender? Cis-gender female. How do you feel this impacted your journey as an autistic individual?


Women, even more so in my generation, were socialized much differently than men, with an emphasis on being accommodating and subservient. I believe this led autistic women to learn to mask more effectively than men since autistic traits can be very triggering to others and don’t fit into acceptable feminine behavioral norms. I learned to mask well enough that when I got therapy for depression and anxiety in middle age, no one suggested autism as a possible diagnosis, despite working directly on issues such as learning to make eye contact and remembering to say to say hi to coworkers passing me in the halls, even being videotaped to better understand how my facial expressions were often incongruent with my emotions.

Are there any other identities that are important to you? Did they impact your journey as an autistic individual?


I grew up identifying as working-class or lower middle-class, with enough money for necessities but not luxuries. As a tween, my family became very downwardly mobile, left almost broke by my mother’s medical bills. We lived in a low-income neighborhood, and I went to very multiracial schools. After my mother died of cancer, my father became very mentally unstable, and I had to become self-supporting at 18, with the social experience of a 12-year-old.

The impacts on my journey were:


1) Having my behavior problems considered a discipline issue in my youth rather than a condition deserving treatment or compassion, as might have been extended to children in more affluent circumstances.


2) Internalizing family assumptions that success is never a given and must be earned by hard work with no excuses or special favors, and can be lost with the slightest faux pas, contributing to life-long anxiety and hypervigilance.


3) Experiencing lots of bullying by people who tended to see my childhood bluntness, standoffishness, and intellectual pursuits as caused by attitudes of entitlement (being labeled as a “spoiled brat,” a ”princess,” “putting on airs,” not “knowing my place,” etc.). Acting as if you are superior to your peers or acting more emotionally fragile than them, are major sins in white working-class culture, much more tolerated as you move up the social ladder. I internalized this criticism and became very subservient to the extent I could pull it off with my then minimal masking skills. I still can feel guilty or ashamed when I put my needs first or express my emotions openly. This shame left me vulnerable to domestic violence, requests to do dangerous and even criminal behavior, and joining a very disciplined, cult-like left group as a young adult.

I did go to college in the 1970s. (Tuition was cheap back then and I worked 20 hours a week in “work study” jobs and lived in dorms.) It was a college known then only for football and partying. 10 years ago, I started attending a graduate school seminary focused on decentering whiteness in my religious denomination. The students were mostly younger, white, and upper-middle-class, often with very elite academic backgrounds, who were trying very hard to prove their “wokeness.” Some of my traits were labeled as white supremacist entitlement attitudes and my efforts to explain them as white fragility, which was very painful to me as a 40+-year activist far more comfortable in multiracial and working-class spaces than in mostly white and upper-class ones, and who had had similar accusations thrown at me as a child, albeit usually not for being white. I felt back in middle school. The way I see it now, the problem was that, during my first semester, I didn’t understand the context I was in. Like I did in school during my childhood, I asked lots of clarifying questions and challenged categorical statements and stereotypes to figure out how literal or accurate they were, AKA “whataboutism.” People saw my honest confusion over terminology and dense academic theory as manipulative, feigned naivete designed to try to get out of admitting how racist, fragile, and mediocre I was.

It didn’t help that I am pretty defensive, but I don’t think it has much to do with race. It stems from way too much bullying and rejection in the past. I got labeled my first semester as a backward old white lady, a label which continued to follow me even though I quickly learned to stop talking. The distress of this, from which I’m still recovering, led me to autism therapy, in part to confirm if I was in denial and really was as backward and ignorant as certain peers and professors assumed I was.

In my current job with a labor-based, 80% BIPOC-staffed non-profit, I am regaining my former confidence that I do work well in multicultural spaces, with humility, willingness to take physical risks, spiritual grounding, affective empathy, and solidarity with oppressed peoples of all identities.

How has your identification as autistic changed how you view your

childhood or other periods of your life?


Generally, a lot more compassion for myself at all ages. I was not a spoiled brat princess, but an expressive, talkative, curious, sensitive, and smart kid who just didn’t understand the subtle niceties of social interaction. This still describes me as an adult, though with much greater social skills than I had as a child.

What are ways you camouflaged or masked?


I’ve tried very hard, and still do, to learn what can annoy others and to avoid doing it, such as making long lists of potentially offensive behaviors that I read often to remind myself what never to do or say. I’m very hypervigilant in group spaces and rarely challenge others for fear they will retaliate. I’ve been successful enough at masking to make a decent living, but at a cost to my sense of integrity and authenticity.

Sadly, I don’t mask as effectively in academic or elite settings where others are actively trying to find fault with me.

I still cultivate my organizer and minister personas, as taking on defined roles gives me more confidence.

What do you wish others knew about autism?


That autism is just a different way of being, disabling in some ways and in varying degrees, depending on the person, but not a moral failing in the sense we might see narcissism or sociopathy. Though there are common characteristics, they manifest very differently for each autistic person. There are autists with high and low support needs, sometimes within the same individual.

I wish more people recognized that empathy is a two-way street. All of us need to be accountable for our behavior. Thus, I accept that I should work to avoid making others uncomfortable, but few neurotypicals act as if that should be reciprocated when dealing with those they judge and stereotype as inferior.

What are some topics or activities you’re passionate about?


Social justice, especially regarding labor and low-income issues. I have been a staunch socialist and union activist my entire adult life.

Ministry – I am not traditionally religious (humanist Unitarian Universalist), but I love the duties of ministry to serve others’ needs via creative life-affirming rituals, pastoral care, and prophetic inspiration. I love planning services by bringing together music, art, and public speaking.

I love to sing, make jewelry, take photographs, and bask in the serenity I find in the beautiful red-rock county of Utah and Arizona, where I spent a lot of time as a child and young adult.

What helps you cope during moments of overwhelm?


Talking to my brother, who also has autistic traits. Being in quiet dark places alone. Writing out what I’m feeling. Surrendering to my emotional state rather than trying to bypass it like I used to, and letting others help me, which I used to believe was an unforgiveable weakness.

How do you prevent overwhelm?


As I’ve been coming out as autistic gradually over the past year, I’m learning to pace myself better and to give myself permission to avoid triggering situations without hostile self-judgment. I’m setting more solid boundaries with others. I’m allowing myself to do activities that seem weird or unproductive without feeling guilty. More than anything else, autism therapy quieted my inner critic, a perfectionist workaholic who kept telling me I was never doing enough to compensate and was driving me to physical and emotional exhaustion.

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

autistic?


My husband of the past 7 years questioned it at first: as imposing a negative label on myself or coming up with an excuse for not working hard enough to overcome my limitations, or, if true, that I had been inauthentic with him. That created some friction in our marriage. He has come around a lot now he sees I am happier, more confident, and less stressed out. He is very direct and sets very firm boundaries on what topics are off limits and how long he will listen to my concerns, especially if he doesn’t think I am following his advice on how to resolve them. I used to be a lot more submissive and indirect, so we’ve both had to navigate my new ability to act a bit more like him. He is more empathetic now he gets that standard advice for neurotypicals often might not work for me.

I used to assume everyone was aligned with my inner critic, just not as vocally nasty. Thus, when he nudged me to be more assertive and confidant, it felt like criticism, not motivation, and critical feedback felt like proof of my inadequacy and a lack of worthiness to be loved. Now that my inner critic is no longer ruling my life, I trust my husband’s good intent more than I used to, that his “nudginess” is because he wants me (and us as a couple) to be happy, not just to make it easier for him to put up with my anxiety and perceived emotional fragility. I feel more convinced that he loves me as I am, even without consistent compliance with his desires, which my perfectionist critic could not accept as possible. I was trying very hard to become the person I thought he wanted and deserved, and I resented needing to do that. In fact, I judged him negatively for even wanting to be with me as I actually am, despite his demands to be authentic, because I didn’t believe anything less than perfect would gain his respect. Our relationship is more authentic and direct now, which is what he really wanted from me in the first place. Now that he realizes how much I have struggled to fit in and gain acceptance from others, he is more empathetic when I’m feeling down.

My two adult children are supportive, though we haven’t talked about it much. They are glad to see me happier, too. It helps explain some issues they had with me while growing up. I think they respect me more, knowing how hard I had to work to try to be a good parent. (I was a single mom with my older son after an early marriage and divorce, and then after my second husband died in his 40s when our son, my second, was 10. With all the stress I was experiencing, I was not consistently attentive or nurturing to them, despite my best efforts.)

Not all my coworkers know I am autistic, but I did do some minimal disclosure when I applied for my current job and have shared some about specific issues like sensory overwhelm. Like my current spouse and children, my coworkers encourage me to be more confident and assertive. My supervisor, who I have disclosed to, is very supportive, encouraging me to use training funds to get some leadership coaching.

A few ministerial colleagues have challenged my self-assessment, offering ignorant reasons why someone like me could not be autistic, but I assumed others would react that way, so it didn’t bother me much.

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


Read about it from authors with varying perspectives and identities. Do self-assessment quizzes – the results definitely are not an official diagnosis, but I was surprised by how far above the thresholds I scored. Take time deciding if, when, or why you’d like a formal assessment. Seek out an autism therapist or autistic support group, even if you aren’t sure. If you have any autistic-like traits, it will helpful even if you do not meet diagnostic thresholds. Autistic people are usually very welcoming, supportive of their peers, and more inclusive of diverse identities than neurotypicals. And there are way more of us than I would have thought.

Is there anyone else in your family who is autistic?


Yes. The older of my two brothers is severely developmentally disabled, non-verbal, and presents at a 2-year-old behavioral and intellectual level. Autism is among his numerous diagnoses. My other brother is a lot like me and assumes he is low-needs autistic, too, though not as interested in exploring it as I am. We now believe our late father, who died by suicide, was autistic.

What does a typical day look like for you?


Get up, read my email, review my to-do lists, go to work (lots of meetings, calls, and emails and other writing), go home, often to other evening political or faith meetings on Zoom or occasionally go to one of my husband’s jazz gigs (professional bassist), then relax at home making jewelry or watching tv with him, and lastly sleep, though rarely well or enough. Rinse and repeat.

If you work, what do you do for work?


For the last year, I have been a faith outreach organizer for a labor-based economic justice non-profit. It’s a great job, though working full time+ is pretty tiring at 67. I was ordained right before the pandemic and pastored a small rural UU church part-time until it ran out of money due to pandemic hardships and laid me off. The previous 8 years were spent getting my MDiv and interning as a minister and chaplain. In 2011, I had retired from a utility company where my last 11 years were as a tech writer and the previous 17 as a power plant control operator. In my 20s, I did several other blue-collar jobs in heavy industry, which I greatly preferred to doing jobs I was terrible at, like waitressing. I was fired from several service sector jobs for incompetence and poor people skills before that.

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

Yes. Unmasking Autism, by Devon Price. Women and Girls with Autism Spectrum Disorder, by Sarah Hendricxks. We’re Not Broken, by Eric Garcia.


Did you seek out therapy, coaching, or other forms of structured

support for autism?

Covered above, plus I just started autism-informed career coaching to develop leadership skills.

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

Email:milliephillips@comcast.net

 

Thank you for reading. If you are a late-identified autistic, I would love to have you participate in this series. Please email me at jackieschuldart@gmail.com if you are interested.

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