top of page

“You’re Autistic”: Receiving a Later-in-Life Autism Diagnosis

Updated: Sep 20, 2023

**TW: depression, substance use, suicidality and some curse words**

Friday, January 29, 2015, at 7:48 PM: There is this general malcontent with my life that permeates absolutely everything. Sometimes it seeps into my soul, my cells, plagues me from the inside out.

Sunday, May 15, 2016, at 12:25 PM: She told me yesterday, “Forget about your hurt feelings,” when I tried to tell her, like an adult, that my feelings were hurt.

Thursday, July 23, 2020, at 2:01 AM: If I start off this entry with, “I can’t stop crying right now,” it would be an echo of a cliché — every entry I wrote through middle school, high school, college — maybe even part of elementary school. And yet — here we are. I can’t stop crying.

Monday, August 15, 2022, at 10:06 PM: I welcomed the cover of night because nobody can really see me crying — I don’t like people seeing my eyes — I like the shroud of darkness because no one can see my eyes. I can feel my feelings, and nobody bears witness. I feel like I have to hide. I cried and heaved and wished that I could just be “normal”.

Thursday, June 22, 2023, at 10:44 PM: I don’t feel like I am deserving of life. I don’t care to try, sometimes; my brain is such a hostile environment to be in, sometimes. I can’t breathe. My heart hurts so fucking much. We’ve been here before.

The upward spiral- Grappling with internal struggle:

Malaise. Rejection. Exhaustion. Burnout. Feelings of overwhelm. Painful eye contact. Furtive emotional breakdowns followed by promptly pulling myself back together. Feelings of worthlessness. Thwarted belongingness. These are all experiences and feelings that I have come to know all too well, stemming back from journal entries and reflections of even my early elementary school-aged days.

Up until about a year ago, I chalked these chronic, ongoing feelings—of rejection, perceived burdensomeness, feelings of alienation, burnout, cycles of exhaustion and overwhelm, and unhealthy perfectionism—to various other conditions. Growing up, I was labeled as the quirky, shy, quiet bookworm. Social skills weren’t my strength. I liked being alone or I followed my big brother around. I struggled to initiate conversation and make friends often, until I hit puberty. I had to grow up fast back then.

Ever since I was 10 years old, practitioners attributed my mental health manifestations to various singular conditions including Major Depressive Disorder, Post-Traumatic Stress Disorder, and Generalized Anxiety Disorder. That is, up until about a year ago.

Opportunities and room for growth:

I had started seeing a new therapist. In the summer of 2021, I uprooted my entire life and moved to North Carolina to pursue an academic dream I have always strived for. I found myself in a very stressful, highly competitive doctoral program in social work. Though rewarding in many ways, academia can feel toxic, stressful, demanding, and overwhelming. After some time together, hearing my history and current struggles and observing my behaviors in session, my new therapist suggested that I might be Autistic.

Hearing the suggestion that I might be Autistic was earth-shattering for me for a number of reasons. I grappled for almost a year with my own internalized stigma and the damaging stereotypes and misconceptions about Autistic people I was familiar with hearing or seeing. As a society, we are ableist and tend to stigmatize any type of deviance from the “norm”, like neurodivergence.

Challenging my own inner critic:

In May of this year, I was referred out for a clinical diagnostic exam. After an extensive intake process and over five and a half hours of an intensive clinical interview and several meetings, I was officially diagnosed as Autistic at the age of 33, all whilst concurrently doing intensive individual trauma work and entering the most grueling and demanding year of my PhD program.

Receiving a new diagnosis of any sort can elicit a mixture of both trepidation and elation, as well as relief, confusion and understanding. Not only am I Autistic, but I was also diagnosed with Attention Deficit Hyperactivity Disorder during this diagnostic assessment. I have a childhood history of Major Depressive Disorder, recurrent, Generalized Anxiety Disorder, and Complex-Post Traumatic Stress Disorder (C-PTSD). In addition to my other intersectional identities that are systematically oppressed in society (e.g., biracial person of color, queer, transgender/genderqueer, etc.), my mental illnesses also mean that I am disabled.

Lessons in self-love and self-worth:

I am personally unpacking this and learning that disabled is not an ugly word; I can be disabled but it does not have to define me. I can be proud, I am worthy. I am using the word “disabled” because I feel it is important to label and recognize my conditions as such. Our society stigmatizes disabilities. I have found that the “invisible” disabilities are the ones often rebuffed.

I am not my diagnoses, but my mental health diagnoses do make my existence in this world feel that much more difficult at times, despite how things appear externally. In an ableist, racist, homophobic, transphobic, unsupportive environment, the problems lie within the systems in which we exist, not the individual with varying diverse identities.

This journey of self-discovery and understanding has been tumultuous in many ways as I attempt to navigate a world that is not set up to support the needs of people who show up differently. Being neurodivergent in a demanding neurotypical world is exhausting and can be traumatic in-of-itself.

I am unpacking my own internalized shame and stigma around the identities I hold, not because I inherently think I am unworthy of love (though my C-PTSD will flare up at times and tell me otherwise), but often because the implicit message has always been: You do not belong here. You must change yourself to fit in. You must acclimate to our world and our norms to survive.

Self-compassion and coping:

Most of us have learned to mask or camouflage our true, authentic selves to some degree, depending on the various social settings in which we show up. Different people in our lives may see different parts of us, but for Autistic folx*, we often mask or camouflage to a damaging extent because we are told that our stigmatized traits are just us being difficult, overly sensitive, or overreactive.

This is exhausting. Research shows that masking can lead to severe mental health problems including depression, substance use, and suicidality—all issues that I have dealt with in my life that are likely exacerbated by my other diagnoses and societal treatment of my various marginalized intersectional identities.

I’ve been wondering a lot about what it would mean for us to live in a world that does not ask people to mask themselves—one where we can show up as our authentic selves. One where we can exist without receiving dismissive remarks or ableist, disparaging comments cloaked as jokes that infantilize and minimize our experiences and our struggles.

Even in the very short period of time since I have been diagnosed as Autistic, leaning into my new understanding of self and learning more about Autism, I have heard hurtful comments such as, “You don’t seem Autistic! I don’t think you’re Autistic.” Most recently, during my attempts at practicing better communication about my emotions and past traumas in the context of dating, I received ridicule about my communication style and difficulties. Though they may have been "well-intended" or lighthearted, jokes about disabilities with a person who is struggling are not appropriate.

The underlying, implicit messages behind these microaggressions struck deep, implying that I am inept, something to be dealt with, fixed, made fun of. One person relegated our ongoing communication struggles to me being “fucking Autistic,” all with a laugh. I’ve cried so many tears over this diagnosis, especially when my C-PTSD flared from the chronic stress of the PhD program and my difficult research topics: mental health (i.e., depression and suicidality) among queer youth and young adults. Living with a disability is not funny. We can find lighthearted joy, but having non-disabled peers making fun of us is not it.

Embracing the beauty of human diversity:

Disabled people are people. Autistic people are people. Individuals with mental illness are people. We are all on our own journeys of self-discovery and healing growth. I implore people to be more kind, considerate, and compassionate to all people, especially when they are coping with new mental health diagnoses and disabilities.

Tender loving care and critical self-reflection is necessary in all contexts, always. Ableist jokes about a person’s disability or differences can be incredibly harmful and exacerbate feelings of worthlessness and alienation, feelings that are all too common amongst some of us, and they are especially harmful during moments of fragile vulnerability.

So many of us have internalized the negative messages we have received throughout our lives; we need to identify ways to mitigate harm and help all people feel supported. I have since decided that anyone who does not have the ability to recognize how insensitive and hurtful it feels when people make fun of my mental health struggles and disabilities (or those of others), especially during times when I am actively struggling, are the problem; not me.

I am not overly sensitive; I am perceptive and emotionally attuned. I am not weird; I am unconventional. I am not "too much"; I am just enough. I am not childish; I am joyful and curious. I am not cold and unfeeling; I am rational and analytical. I am talented. I am hardworking. I am a complex human being worthy of respect. I am Autistic and I have feelings that are valid.

Though my world has been turned upside-down in many ways since being diagnosed as Autistic, I feel lucky to have supportive people in my corner who remind me that I am still me, and who love me unconditionally. I am who I have always been. However, I am also reconfiguring who me really is. I am unmasking, which can feel uncomfortable and terrifying, albeit, refreshing with supportive, affirming, safe people.

When you spend so much time unconsciously and consciously masking, from childhood to the age of 33-years old, how do you know who you really are? I am rediscovering myself, the other parts that make up me that I kept locked away for so long. Though this can feel very unsettling and has elicited some grief reactions in me, in many ways this new discovery also feels life-changing and empowering.

As I learn more about myself and how Autism shows up in diverse populations and with co-occurring mental health diagnoses, I feel the slow unmasking process sinking in. I’ve begun giving myself permission to do things to self-soothe that I previously had to hide, like rocking back and forth, listening to the same song on repeat for long periods of time, carrying rocks in my pockets, and wearing sunglasses even when it’s raining because my eyes are sensitive and sometimes eye contact with strangers on the street is jarring.

I’m asking for accommodations in school and giving myself permission to take up space and ask for what I deserve. I’m reading more about Autistic lived experiences and seeking out connections with other Autistic and neurodivergent people. I’m finding shared experiences and commonalities between myself and other neurodivergent individuals that help me feel accepted, seen, and validated.

Most importantly, I’m leaning heavily and learning to trust fall into my loving, non-disparaging social supports, and special interests that keep me functioning, like running, biking, backpacking, rock climbing, journaling, writing, and artwork. Most recently, I gave myself grace and permission to take psychotropic medication to help support me through this difficult transition in life, something I have often struggled with internally because of my culture’s stigma against mental health supports.

Growing pains and refrains- Giving ourselves time:

I’m a work in progress, but I’m feeling better about it as I power through these growing pains. Some days are harder than others. Some days I wake up and want to hide in the cocoon of my weighted blanket; other days I jump out of bed with a zest and zeal for life. I’m cracking my mask and my walls wide open. Some days it feels terrifying, and other days it feels like absolute liberation.

My therapist reminded me that all caterpillars turn into literal mush and goo before they transform into a butterfly or a moth. I feel like gooey mush, but I know it’s not a bad thing, because I’m molting. What magic! A neurodivergent brain is a beautiful thing. I'm gonna be okay.

Tuesday, July 11, 2023, at 3:32 AM: I started reading “Unmasking Autism: The Power of Embracing our Hidden Neurodiversity”, and the introduction resonates so much with me. Onward, ho!

*Folx is a spelling of folks, used especially to explicitly signal the inclusion of groups commonly marginalized.


By Dee Williams

bottom of page