As a late-identified Autistic person, one of the most important moments of my life was when my Autism was officially identified a few months before my 30th birthday (over 10 years ago now). For me, this moment was a critical turning point because, up until then, I didn’t truly know myself and depended on other people to tell me who I was and what I needed and wanted in life… people whose experiences, desires, and minds were very different from my own.

Over the years of not knowing my own brain, I got used to people dismissing me when I tried to tell them what I needed to be successful and happy in life, so much so that I stopped trusting my own instincts, will, or desires.

The dismissals started in childhood.

In school, when I told my teachers the classroom lights hurt my eyes and tried to hide from them, or wear sunglasses and hats to protect myself, they told me, “Nobody else was complaining.” My teacher confiscated my sunglasses and hat, saying they weren’t allowed at school, especially indoors.

Not knowing I was Autistic, or even what Autism or sensory differences were, I assumed everyone felt the same discomfort I did, and everyone else was toughing it out… so I tried to do the same.

Eventually, the pain in my eyes from the bright lights and busy sensory environment turned into headaches, and I asked to go to the nurse. However, when I got to the nurse’s office, she took my temperature and, since I didn’t have a fever, sent me back to class.

Day after day, the same thing happened; the eye pain would escalate to headaches that grew stronger and more intense as the day progressed.

When the headache became too intense to concentrate, I would ask for the nurse’s pass and back down to the office I would go. Once in her office, the nurse would take my temperature again, and since I had no fever, she would send me back to class each day.

Eventually, after days of headaches, the nurse told me I needed to stop coming to her for headaches because there was nothing she could do for me since I was not contagious, and because the rules were that, since I had no fever, I must stay in class.

So, I went back to class and stopped mentioning my headaches (though they kept happening regularly).

The headaches became my normal, something I assumed I would always live with, because I didn’t know they were preventable, or what was causing them (yet).

Eventually, the headaches evolved into stomach distress, dizziness, and vertigo that would make the world around me spin until I threw up. The vomiting was a much more visible symptom that was harder for my teachers and the adults in my life to ignore.

With this new symptom, I finally started receiving medical care, tests upon tests trying to evaluate what was happening with my digestive system… but they were looking in the wrong place.

I didn’t know it then, though I know now, that the problem wasn’t in my stomach. It was in my brain.

In elementary school, and as I grew older, I didn’t understand that the vertigo and dizziness were important symptoms that I should have shared with my doctor and the adults in my life, because I assumed they were just part of the nausea, instead of realizing they were part of the cause of it (along with sensory overload).

While my doctors and the adults in my life were focused on testing and treating my stomach (because the vomiting was a visible symptom), the real culprit (my hypervigilant and overloaded brain) was ignored.

Eventually, the doctor concluded my stomach was fine and assumed the symptoms were all in my head, or possibly a strategy I’d used to avoid school. I definitely wasn’t contagious, and nobody around me was going to catch whatever was going on with me.

After they got this information, the school decided that because my doctor had cleared me as “not contagious” and said I “could go to school,” my stomach-related absence would no longer be excused.

Because the school refused to excuse my absences, my mom had to send me to school even if I wasn’t feeling well (as long as I didn’t have a fever). If she didn’t, the school would consider the absence truancy and come after my mom and me for the days I missed.

Truancy was, and still is, a crime in Texas (where I grew up).

This taught me that, no matter how bad I felt or how much I needed to rest, those needs didn’t matter. I had to show up and do my best, no matter what.

The headaches, dizziness, vertigo, and nausea continued with varying frequency, off and on, for over twenty years.

For most of my life, I assumed I’d always have this mystery illness, with no known cause or trigger plaguing me.

Sometimes I would go weeks, months, or years without an attack. Other times, they would come frequently (multiple times a week).

Though the cause was unclear, these attacks often popped up when my life changed, or new routines or tasks were added to my schedule.

Even in times of remission, I struggled to enjoy the periods of good health, because I found myself anxious, wondering what would trigger the sickness to return.

After a period of relatively good health, in my mid-20s, much to my horror, the mystery illness started creeping back into my life with a vengeance.

At the time, I had what I thought was a good corporate job, the kind I’d been told I should aspire to my whole life, and this sickness, the one doctors could never pin down, was sure to take it from me if I didn’t find a way to get it under control.

As the headaches started, I did my best to ignore them, but each day I went to the office, within hours I would find myself in great pain.

By the end of the day, it would feel as if the office floor and walls were moving, and the spinning would make me feel (and get) sick to my stomach.

Unlike at school, where they expected me to show up sick, my boss told me not to come to work in that state and sent me home two towns away (though I could barely drive).

Some days I woke up sick (and called in to work); other days, the sickness crept up on me at the office (and I would go home early).

I did my best to work through the frequent headaches (that were happening at least 2-3 days a week), but always tried to leave before the spinning (and debilitating vomiting) made an appearance (since they made it very difficult to drive safely).

Desprate to keep the corporate job (that I now know was a big part of what was triggering my sickness), I started seeing a doctor about what was happening to me, even though no doctor before had ever been able to get to the bottom of what was happening.

Eventually, after months of tests, diet changes, and probing, I was only getting sicker, and despite wasting down to 94 lbs, the doctor had no answers.

“Physically, there’s nothing wrong with you,” she said. “I would like to refer you for a mental health assessment, and for you to be screened for anxiety.“

Apparently, she thought it was “all in my head” – something I’d been told before.

I was frustrated by her assessment; it felt like a dismissal, but a voice inside me reminded me of something I’d almost forgotten.

Months earlier, while reading books about animal behavior, I came across a book by the Autistic author Temple Grandin.

In the book, Temple described her experence of being Autistic and how it had made her better at understanding the needs and experiences of non-human animals, and I related to her experience greatly, more than I’d related to almost anything else before. However, after reading Grandin’s description of what being Autistic was like for her, I’d gone to the internet and Googled Autism, and the words I found (by non-autistic people talking about Autism) weren’t relatable to me, so I’d shelved the idea.

It didn’t occur to me at the time that the medical professionals and parents of Autistic children, viewing Autism from the outside looking in, could be so wrong about the Autistic experience.

Had the doctors, parents, and ABA (applied behavior analysis) providers been the only voices I’d found, I might never have even considered that I might be Autistic. However, something about Temple’s experiences had stuck with me, so I asked my doctor if it would be possible, since I was going to have a mental health assessment anyway, if I could see someone who understood Autism so I could “rule that out“.

My doctor told me she “didn’t think I was Autistic,” but agreed that being assessed couldn’t hurt, as she handed me a white business card with raised blue text and contact information for the Texas chapter of the Autism Society.

I called the number on the card and asked for providers in the Austin area who worked with and diagnosed adults.

Out of hundreds of providers, only three or four were even willing to assess someone like me (an adult who was almost 30). Many worked in ABA centers and only focused on Autistic children (who the centers could sell ‘services‘ to).

In the end, I ended up with a provider who specialized in Autism and anxiety.

My assessment was in two parts.

First, there was the initial meet-and-greet session, where I filled out multiple questionnaires, met with the doctor, shared baby videos of myself, and went over the 10 pages of typed notes I’d brought with me, explaining why I thought I might be Autistic.

Before I left the initial session, the doctor asked me for a list of people she could interview who knew me growing up, so I gave her a list that included my grandmother, my childhood best friend (who’d known me in pre-school and elementary school), and my high school best friend (who also was working with me at the corporate job that was breaking my brain).

Weeks later, after all the interviews were complete, I came back for the second half of my assessment.

Part two, for me, was where I was given the news (along with a 14-page report) about how I was (and always had been) Autistic.

The report included all the doctor’s findings, along with information gathered from interviews with my family and friends. It was a lot to swallow.

At first, I felt many things (anger, sorrow, relief, denial, and curiosity). Part of me felt as if the assessment couldn’t possibly be correct.

Luckily for me, the doctor had recommended a decent list of resources written by and for Autistic people (that I quickly devoured).

I say “lucky” because, in my state of denial and doubt, had these recommendations not been given to me, and I’d gone back to reading what non-autistic people had to say about Autism, it would have been easy for me to convince myself that the doctor had been wrong. However, because I’d been steered towards Autistic lived experiences first, and found myself relating to their stories even more than I’d related to Temple’s story previously, the more I read, the more the truth became undeniable.

Each Autistic story felt, to me, like the song ‘Killing Me Softly.’

By the time I was done digesting the books my doctor had recommended to me, I’d come to terms with the fact that I was (and always had been) Autistic.

I knew I was Autistic, but I didn’t yet know exactly what Autism was, or what being Autistic meant to me on an individual level… yet.

Hungry for more, I turned back to the internet and Googled Autism, as I’d done months earlier. Once again, I was disappointed by what I found.

Ten years ago, the online Autism landscape was very different from what it is today.

Autistic people were not the main ones leading the online conversations about what Autism was. Instead, non-autistic parents of Autistic children and medical professionals were the main ones talking (over Autistic people) about Autism.

A few Autistic blogs and creators existed. Still, these voices were much harder to find, as they were buried under all the Autism Parent blogs (that were mostly parents complaining about how hard their lives were because their kids were Autistic), people selling Autism services, and others claiming they could somehow “cure” Autism.

In those days, most of what I found was very “gloom and doom.”

Autism was almost always painted by the non-autistic people hogging the metaphorical microphone as a tragedy that stole children, that society must find a way to cure, and hashtags like #NothingAboutUsWithoutUs and #ActuallyAutistic were much more popular than they are now (because it was rare that actual Autistic voices and opinions were included in conversations about Autism at all).

From all of it, I was able to eventually piece together what Autism was, at least through a medical lens, and what being Autistic meant to other Autistic people. However, I was still struggling to pin down what being Autistic really meant to me, personally.

Though I found the stories of other Autistic people sharing what Autism meant to them to be very helpful, Autism is a very wide spectrum, and each of us experiences being Autistic in a way that is unique to us.

It would have been great if the person who’d assessed me years ago had been able to hand me a resource that could have helped me work through learning about my own Autistic identity and brain, but as far as I’m aware, no such resource existed in those days. So I was left (mostly on my own) to figure out what it all meant.

It took me years to untangle it all, but eventually I did finally begin to understand what being Autistic meant to me.

I learned about my communication needs, my executive functioning needs, and, perhaps most importantly (for me), about sensory overload and my sensory needs, and what I could do to protect my sensitive senses.

Once I understood my sensory needs and my sensory triggers better, and stopped exposing myself to those triggers, something miraculous happened – the headaches, dizziness, vertigo, and nausea that I’d experienced for most of my life stopped.

It turned out that, in my case, all of that pain had been 100% preventable, and that all I had to do to stop the pain was to know, honor, and protect my sensory system.

After over twenty years of pain and suffering, understanding myself (and what being Autistic meant to me) finally set me free.

My teachers, doctors, and other adults in my life were very wrong about what I needed to thrive (more exposure) so I could “get used to” and fit myself into the world around me.

I wasn’t the problem (though for most of my life I believed I was).

The problem was that the world I lived in wasn’t meeting my most basic human needs (and other people told me what they thought I needed because they thought they knew better than I did).

In reality, I needed to understand myself and my needs better so I could mold the world around me to meet what I needed to thrive.

Personally, I believe it shouldn’t have taken as long to learn about myself, but I am still proud of how much I learned, given the limited resources available to me at the time.

It would have been great if a resource had existed back then to walk me through that self-discovery process. However, in those days there wasn’t anything (at least not that I could find) to help me with that process. That’s why I am so excited about the book Rebecca Duffus and I are collaborating on, which releases on November 13, 2026 (it has BEAUTIFUL illustrations by the talented Carrie Schneider).

This book is the resource I needed when I was newly diagnosed 10 years ago (but it didn’t exist… yet), and I can hardly wait to share it with you.

Description

Having a positive understanding of your Autistic identity is an indicator of higher self-esteem, confidence, and well-being.

This empowering workbook (Autism, Identity and Me: A Practical Workbook to Empower Autistic Adults) has been designed to help Autistic adults, whether newly diagnosed or self-identifying, develop a positive understanding of their unique Autistic identity.

With a highly structured, interactive, visual approach, the workbook guides readers through key areas, including focus, routine and structure, masking, sensory experiences, and emotions and energy levels.

The book includes a wealth of tools and exercises with first-hand experiences woven throughout, and offers an affirming framework to encourage and build:

• An understanding of what Autism is
• An understanding of what Autism means to you
• A positive sense of self
• An acknowledgment of things that may be trickier
• A pride in being Autistic

This workbook will be valuable for newly diagnosed adults and those wanting to better understand their own unique Autistic identity, as well as the professionals, friends, and loved ones supporting them.

Book Links:

Publisher page: https://www.routledge.com/Autism-Identity-and-Me-A-Practical-Workbook-to-Empower-Adults/Duffus-Rivera/p/book/9781041284567

Other booksellers: https://neurodivergentrebel.com/2026/07/09/get-autism-identity-and-me-a-practical-workbook-to-empower-adults-order-now/

Get 20% off when you buy directly from our publisher!

Use code 26AFLY4* at checkout!

*Expires on 31st March 2027.

https://www.routledge.com/Autism-Identity-and-Me-A-Practical-Workbook-to-Empower-Adults/Duffus-Rivera/p/book/9781041284567