The process of realizing one is autistic

For many autistic individuals, the journey to self-discovery is not straightforward. It often unfolds in stages, influenced by personal experiences, societal expectations, and available information.^[1]Experiences of Adults Following an Autism Diagnosis (Hens & Langenberg, 2018) While no two experiences are identical, many late-diagnosed or self-identified autistic people describe a similar progression—from a vague sense of difference to profound self-understanding. This post outlines those stages and my personal experience navigating them.

Realizing one is autistic can be a life-changing process. For some, it brings immense relief and clarity, while for others, it stirs up feelings of grief, anger, or self-doubt.^[2]Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults (Lewis, 2016) This journey is deeply personal, and the timing and circumstances of each person’s realization vary widely. Some may recognize their autistic traits early in life, while others may not piece things together until adulthood. Regardless of when this realization occurs, self-discovery at any stage of life is valid and meaningful.^[3]“Autism is me”: an investigation of how autistic individuals make sense of autism and stigma (Botha, Dibb, & Frost, 2020)

Pre-discovery: feeling different but not knowing why

• A sense of being different from others without a clear explanation
• Feeling alone, disconnected, or misunderstood
• Noticing personal challenges that others don’t seem to face
• Recognizing unique strengths but struggling with aspects of daily life
• Mental health challenges, possibly misattributed to other causes^[4]Identifying the lost generation of adults with autism spectrum conditions (Lai & Baron-Cohen, 2015)

☞ My experience

For most of my life, I had no idea I was autistic. I just knew that I felt different—like I was on the outside looking in, trying to understand a world that never quite made sense to me. No matter where I was, I felt separate. Alone in the world. Alone in my family. Even when I was surrounded by people, I felt like there was an invisible barrier between me and everyone else, one that I didn’t know how to break through.

Others might relate to this feeling in different ways—perhaps experiencing extreme social exhaustion, struggling with sensory sensitivities, or feeling a sense of isolation despite external success. The specific challenges may vary, but the underlying sense of difference remains a common thread.

☞ Eva’s experience

I felt disconnected as a teenager and had a fear of social life, such as going to bars twice a week. My parents would urge me to visit my friends and had to push me to connect with people. I longed for connection, but at the same time, I was not actively looking for it—I was hoping it would simply fall into my lap. I got my first girlfriend because she was the one who reached out to me.

☞ Hailey’s experience

I definitely felt different from a young age, although I had always attributed those differences to social anxiety. I excelled in ways my peers didn’t but struggled in ways no one else seemed to. For example, I attended an online high school, and I had no difficulty finishing my last 3 years’ worth of coursework in a period of 18 months. Nevertheless, once I went to college, I used to excuse myself from class at least once daily to cry in the bathroom. I was so overwhelmed by having classes at specific times, even though they “only” consisted of listening to lectures. None of my peers seemed bothered by it, and it was mindboggling to me.

The emotional toll of feeling different

• Self-esteem struggles: Growing up with the belief that something is “wrong” or “off” about oneself can lead to feelings of inadequacy and low self-worth^[5]Mandy et al., 2012
• Identity confusion: Many people shape their identities based on their interactions with the world. When social interactions feel unnatural or exhausting, it can create a fractured sense of self^[6]Experiences of Autism Acceptance and Mental Health in Autistic Adults (Cage, Monaco, & Newell, 2018)
• Emotional loneliness: Even in the presence of others, there is often a sense of isolation^[7]“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions (Hull et al., 2017)
• Anxiety & depression: These feelings of disconnection, combined with repeated social difficulties, can contribute to mental health challenges, which may be misdiagnosed as primary conditions rather than symptoms of undiagnosed autism^[8]Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis (Hollocks et al., 2019)

The ‘something’s not right’ phase

Over time, many people begin to notice recurring patterns in their struggles. Research has shown that autistic individuals often experience a mismatch between their internal experiences and societal expectations.^[9]The ‘double empathy problem’: Ten years on (Milton, 2022)

• Noticing patterns in difficulties (social, sensory, communication, etc.)
• Feeling like the explanations given (e.g., anxiety, depression, personality differences) don’t fully fit^[10]Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis(Russell et al., 2019)
• Becoming aware that mainstream advice on socializing, relaxation, or self-care doesn’t work^[11]“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum (Nicolaidis et al., 2015)
• Observing that others don’t struggle in the same way
• Possible first encounters with autism-related content but not recognizing oneself in it yet

☞ My experience

For a long time, I knew I experienced the world differently, but I never thought much of it. I just assumed something was wrong with me—that I was broken in a way that other people weren’t. I struggled to connect with people in the way they seemed to connect with each other. I felt unlikable, like there was something fundamentally off about me that I couldn’t quite fix.

☞ Eva’s experience

I discovered I was autistic at 19 and was diagnosed at 25. Other people displayed a lot of innate social behaviors, while I had to exaggerate mine. I had to demonstrate behaviors that were not authentically mine. I would adopt behaviors to fit in, and it always puzzled me. It made me feel wrong, dirty, and borderline evil, and I wondered if I could be a psychopath because I wasn’t being honest. It made me feel defective.

☞ Hailey’s experience

Everything seemed to fall apart once I started college. That year, I moved out for the first time, began living with my partner, worked 5 days a week, and attended a college that required a more-than-one-hour commute each way. My partner was extremely social at this point in their life, so people were constantly in my home. I was overwhelmed, I was exhausted, and I was miserable. I didn’t have the word for it at the time, but that was one of my first serious encounters with autistic burnout. I somehow stumbled upon the RAADS-R at this point in my life, yet for some reason, despite surely scoring above the threshold, I forgot about autism entirely. I just thought I was broken or too fragile for the world. If I had known what I know now, I would’ve given myself more grace during this period, but instead, I kept pushing myself until I snapped. I thought to myself, “Everyone else is managing this, so the issue is clearly me, not the demands. I’ll just force myself to do this, too.” 

Self-assessment & initial recognition

This growing sense of dissonance often pushes people to seek answers, leading to the moment when they first encounter autism as a possible explanation.

• Encountering a description of autism that resonates (articles, videos, social media, or meeting an autistic person)
• Taking online autism self-assessments.^[12]Predictive validity of self-report questionnaires in the assessment of autism spectrum disorders in adults (Sizoo et al., 2015)
• Researching autistic traits and beginning to piece things together
• Feeling both excitement and fear at the possibility of being autistic.^[13]Deficit, difference, or both? Autism and neurodiversity (Kapp et al., 2013)

☞ My experience

I had never really considered autism as a possibility for myself. I had only been aware of autism in individuals with intellectual disabilities—the kind I had seen in clinical settings or stereotypical portrayals. I had been taught that autism prevented people from working, marrying, or leading independent lives.

Many others share this experience—growing up with an incomplete or inaccurate understanding of autism, only to later discover that the diagnostic criteria and common stereotypes had failed to capture the full spectrum of autistic experiences.

☞ Eva’s experience

The Big Bang Theory was pretty relevant to me. I resonated with Sheldon. Yes, he was an exaggeration, but he displayed many of the characteristics externally that I was experiencing internally. I was more masked than he was. I also saw a pamphlet in a doctor’s office about gifted autistic adults. That pamphlet really resonated with me and ultimately led me to push for an assessment.

☞ Hailey’s experience

I also resonated a lot with media, although, in some ways, it was subconscious. I remember watching the show Alphas, which had an autistic character named Gary. I just adored him and couldn’t help but feel the impulse to adopt some of his mannerisms, although I didn’t consciously decide to. It wasn’t that I was trying to mimic that character, but rather that seeing the character made something click in my brain—it was the “permission” to be myself, and in some ways, I am a bit like that character in my mannerisms.

It was around this time that my younger brother was diagnosed with autism, which only further solidified what I had come to know. My family’s first thought was, “Oh, Hailey did all of those things, too!” to explain my brother’s characteristics, but after his autism diagnosis, the tone of that changed to, “Wait a minute… Hailey did all of those things, too.” I am so grateful for the support I had during that discovery period because it was a lot to realize and involved several months, if not years, of analyzing each and every one of my characteristics. It was exciting but also exhausting. 

Researching autism: the shock of misinformation

• They’ve been misled: Many autistic people grew up believing myths about autism—such as the idea that all autistic people lack empathy, struggle academically, or have obvious communication difficulties^[14]Gernsbacher, 2017
• Past misdiagnoses were avoidable: Many late-diagnosed autistics recognize that they were misdiagnosed with anxiety, depression, or personality disorders, when autism was the underlying cause all along^[15]Gender differences in self-reported camouflaging in autistic and non-autistic adults (Hull et al., 2020)
• Invalidation can be traumatizing: Sharing their realization with others and being met with skepticism can be deeply painful^[16]Arnold et al., 2020

☞ My experience

The hardest part of my self-recognition wasn’t internal—it was external.

I was excited about my discovery, so I shared my thoughts with everyone. I wasn’t prepared for what happened next. The people who knew me best said, “There’s no way you’re autistic.”

It was traumatizing. I had spent my whole life feeling lost, searching for an explanation, and the moment I found one that made sense, people refused to acknowledge it. I was desperately trying to understand myself, but instead of support, I was met with dismissal and rejection. That was the moment I discovered invalidation trauma—the deep psychological wound that forms when people deny your reality, when they tell you that what you know to be true about yourself isn’t real.

I did struggle deeply with imposter syndrome.

☞ Eva’s experience

When I came out to my friends as autistic—which was called Asperger’s at the time—I said, “I think I have Asperger’s.” They laughed and called me “Ass-Burgers” for half an hour. As it turned out, most of them were autistic. This is just another example of how autistics often don’t realize they are autistic because the people around them are also autistic.

My friend Tom saw me in high school and said, “That’s a character,” because of how I was dressed. We were naturally drawn to each other. The researching came later in time. Tests were not accessible. It was only after I was diagnosed that I did research.

☞ Hailey’s experience

I was extremely fortunate to have a very supportive family and group of friends, but I struggled deeply with imposter syndrome. In my case, the barrier was myself. I’d tell people that I was autistic, except, at that point, I hadn’t yet pursued a formal diagnosis. I felt obligated to give a big disclaimer about how I hadn’t pursued formal diagnosis and that was where I lost people’s interest and belief. Because of that disclaimer, most others didn’t take me seriously, and tried to make me “feel better” by telling me that I was surely wrong.

I even encountered this in therapy. I still remember being moved to a different therapist because my previous one, without any prompting on my part, suspected that neurodivergence was a better explanation for my traits and experiences, but she didn’t have the skills to support me with that. When I met my new therapist, I told her my suspicions about being autistic, and she said, “Oh, honey, no, of course you’re not autistic. You just have textbook anxiety.” It was really invalidating, especially coming from someone who was supposed to be an authority figure.

Emotional processing & identity shifts

• Relief – Understanding oneself better and realizing past struggles weren’t due to personal failure^[17]“Autism is me”: an investigation of how autistic individuals make sense of autism and stigma (Botha, Dibb, & Frost, 2020)
• Grief – Mourning the difficulties and misunderstandings of the past.
• Anger – Feeling frustrated about missed diagnoses or harmful advice received in the past^[18]Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults (Lewis, 2016)
• Validation – Feeling empowered by finding a community and a clearer sense of identity^[19]Kapp et al., 2013

☞ My experience

Receiving my autism diagnosis brought a wave of emotions. The strongest feeling I experienced was relief—finally understanding myself and realizing that my struggles weren’t due to personal failure. I belonged somewhere, and for the first time, I felt truly understood by other autistics. Having a framework to make sense of my experiences was invaluable. Unlike many others, I did not go through a period of grief, though I recognize how common it is among late-diagnosed autistics who mourn past misunderstandings and missed support. Instead, I felt anger; anger at the years of invalidation, at the professionals who overlooked my autism, and at the harmful advice I had been given. But above all, I felt validation. Finding a community and gaining a clearer sense of identity empowered me in ways I never expected.

☞ Eva’s experience

I was relieved to know that I was autistic. I finally had a framework to understand myself, rather than believing I was broken. However, I didn’t acknowledge many of the positive aspects of it. I felt like I didn’t have much going for me. I believed I had no chance of finding a partner and struggled to understand why my girlfriend left me.

I had been alone for a decade. My friends were getting married and moving away, and I thought I was never going to have a partner. I didn’t know how to go about it.
My feelings changed after I met Natalie. She liked me and knew I was autistic. She was also so happy to be autistic. Together, we started researching and learning about all the great aspects of autism.

☞ Hailey’s experience

Because of the positive support system I had, I didn’t struggle with any grief because of being diagnosed with autism. I had also accepted being autistic a couple of years before pursuing a formalized assessment, so it wasn’t such a shock once I finally got a conclusive answer. I did, however, grieve for the younger version of me whose needs were not only unmet but outright disrespected by both myself and those around me. I had a really hard time in the educational system, and I also feel that I pushed myself too hard during those years. A part of me wishes that I could tell my younger self that I’d figure it out soon, if only to give that younger me some hope. Despite all that, I am so grateful to have learned all that I have and to be in a position where I can give myself the love and respect I deserve.

Seeking diagnosis (or not): anxiety & self-doubt

For those who pursue a formal diagnosis, this stage often involves:

• Fear of not being believed: The idea of going through a lengthy evaluation only to be dismissed can be terrifying. Many autistic adults are told, “You’re too high-functioning” or “You made it this far, so why does it matter?”^[20]The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype (Bargiela, Steward, & Mandy, 2016)
• Financial and logistical barriers: Autism evaluations can be expensive and difficult to access, leading some to forgo a formal diagnosis despite strong self-identification^[21]“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum (Nicolaidis et al., 2015)
• Pressure to justify the diagnosis: Even after receiving a diagnosis, some feel pressured to “prove” their autism to others, especially if they don’t match common stereotypes^[22]Experiences of Autism Acceptance and Mental Health in Autistic Adults (Cage, Monaco, & Newell, 2018)

☞ My experience

I received a formal autism diagnosis in 2016. It was something that I felt I needed because I had been wanting to write on the topic, but I did not want to claim an identity that was not correct.

As a trained clinician, I understand the importance of seeking a professional diagnosis from a well-trained and autism-aware practitioner. The accuracy of autism diagnoses heavily depends on the expertise of the evaluator. I found reassurance in working with a practitioner who specialized in identifying autistic females, which made me more comfortable with her assessment. A 2015 study by Bram Sizoo et al. found that self-diagnostic tools can be quite accurate and specific in identifying autism, yet they cannot fully replace professional evaluation.^[23]Predictive validity of self-report questionnaires in the assessment of autism spectrum disorders in adults (Sizoo et al., 2015)

Currently, no biological test definitively proves that someone is autistic. However, this applies to many mental health conditions—there is no objective test for depression or anxiety either. Autism is diagnosed based on a constellation of traits and a person’s lived experience.

Recent research has highlighted the development of self-assessment tools that incorporate the lived experiences of autistic individuals. For instance, the Self-Assessment of Autistic Traits (SAAT) was created under the leadership of autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure.^[24]Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits (Ratto et al., 2023)

☞ Eva’s experience

My diagnosis was covered by insurance in the Netherlands. During the process, the diagnostician suggested that I had ADHD, but I firmly denied it because I was afraid they would diagnose me with ADHD instead of autism. As it turns out, I do indeed have AuDHD.

I was deeply invested in receiving an autism diagnosis because I had spent six years believing it was the cause of my challenges. If I wasn’t autistic, I would have had to reconsider everything about my life. It would have been devastating, and I would have been right back to asking, What is wrong with me?

☞ Hailey’s experience

Initially, I had no intention of pursuing an autism assessment, even after discovering that I was autistic. That knowledge was good enough for me, and I had no interest in sharing it with my healthcare provider. I was diagnosed with sensory processing disorder as a child and later, at age 19, with social anxiety disorder. I had my “secret” phrase; I’d tell healthcare providers about those two diagnoses, and the ones who understood, understood. The ones who wouldn’t have understood in the first place didn’t understand, and that was fine by me.

However, I did struggle with imposter syndrome, especially with the disclaimer about not being formally diagnosed that I felt obligated to give each time I disclosed my identity. I ended up pursuing an assessment at age 21 so that I could feel confident in my identity and share that information with others. I wanted to know, conclusively, whether or not I was autistic, and for me, the only way to banish those lingers “what ifs” was to have a clinician tell me.

Integration & self-acceptance

• Adjusting self-expectations based on neurotype^[25]“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions (Hull et al., 2017)
• Setting new boundaries and advocating for accommodations
• Finding community and connection with other autistic people^[26]“Autism is me”: an investigation of how autistic individuals make sense of autism and stigma (Botha, Dibb, & Frost, 2020)
• Experimenting with autistic-friendly self-care and lifestyle changes^[27]Milton, 2012

☞ My experience

For three years after my autism diagnosis, I struggled with imposter syndrome. I found it difficult to reconcile how so many professionals had overlooked my autism. My realization began when I noticed that my trauma patients were improving, yet my own anxiety, rumination, and meltdowns remained unchanged. These symptoms had been misattributed to trauma rather than autism.

Learning about my autism initially deepened my self-doubt. Friends and family did not see me as autistic, and their misconceptions about autism led them to question my diagnosis. To cope, I created a small Facebook group with 11 other autistic adults, which provided immense validation and support.

My journey of navigating life after my autism diagnosis led me to co-create Embrace Autism. At the time, I found that reliable and accessible information on adult autism was scarce. Determined to bridge that gap, I began researching and writing on the topic. Additionally, I noticed a lot of negativity surrounding autism—perspectives that didn’t resonate with me. I wanted to offer a different narrative—one that embraced autism with insight, understanding, and empowerment.

☞ Eva’s experience

I wasn’t actively looking for a community, but ironically, my friends were clearly autistic. My very best friend once asked if she could be autistic, and I told her, No way, you’re too different. As a result, she didn’t pursue a diagnosis for many years.

This experience showed me that just because you’re autistic doesn’t mean you can easily recognize it in others. It takes a lot of learning before you can begin to identify it. I thought I understood quite a lot at the time—but in reality, I didn’t. This is probably why so much information on TikTok is considered inaccurate.

☞ Hailey’s experience

Autism became quite a passion of mine, especially around the time of my pursuing a formal diagnosis. I’d always been captivated by cognitive psychology and loved learning about different conditions and neurotypes. With autism being so personal to me, that bloomed into a full-blown special interest that has stayed with me for a number of years. In a way, though I didn’t realize it at the time, my realization of being autistic would help shape the rest of my life. As you can probably tell from my experiences being shared in this article, I’ve gone on to work in the neurodiversity field, specifically here at Embrace Autism where I get to be a part of the journey to self-discovery for so many. I like to think that while I can’t go back in time and take away all the challenges I faced when I was younger, I can exist in a role that allows me to help other people who might be at similar stages in their journey. I feel like I’ve found a community where we’re all loved and accepted for who we are, including for all of those traits that make each of us unique.