Thoughts on late diagnosis, growing up undiagnosed, changes to the definitions and descriptions of Autistic people in the DSM since the 1980s, and how being identified late in life can be lifesaving.

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In a few days, on March 29th, I will be 39.

I am one of many Autistic people who were missed for generations (our needs ignored, and pressured to assimilate with the people in the world around us, often through harsh punishments, abuse, bullying, and the encouragement to deny our own wants and needs).

I was born under the DSM-3 (a book that is now most useful when viewed more as a ‘history lesson‘ than one that contains currently accepted medical facts).

DSM-3 (1980), which was used during my early developmental period, stated that “all criteria outlined must be met and present by age 3“ (when Autistic traits are easiest to assess, because we’ve not yet started to adapt or blend in through masking and other coping skills).

Looking back at my baby and childhood videos (which were reviewed during my Autism assessment 10 years ago), now that I know what Autism is, I can see many clearly visible Autistic traits, starting when I was just an infant and throughout my preteen years (the last video I have is from when I was 11 years old).

Because Autistic traits and other forms of Neurodivergence often run in families, many of the ways my Neurodivergent traits were expressed in my younger years, when the DSM-3 called for Autism to be assessed, were seen as ‘perfectly normal behaviors for a kid my age‘ (especially at home before I started school).

The Neurodivergence was clearly there, but nobody in my life knew how to recognize it (because many of my family members were also unidentified Neurodivergent people, several of whom have also been identified or self-identified themselves in adulthood).

Being Neurodivergent wasn’t much of a struggle at home, especially not in my early years (now, the teen and preteen years, when my hormones kicked in, were a totally different story, however, that happened much later in my journey).

It wasn’t until I entered public school in the first grade (after spending my early years in a very small Lutheran church school with class sizes of 5-10), and was placed in a much busier, louder, faster paced classroom (with around 20 students) under the care of a teacher who had a schedule to stick to and the expectation that we all move at a unified pace she set, that my AuDHD (Autistic and ADHD) traits started to be noticed by those outside my family.

Having autonomy over my environment has always been a key factor in wether I thrive or struggle in various environments I enter.

At home, when possible, I set my own pace as I grew up. I didn’t need permission to go to the bathroom, stand up, sit, or lie down. My family set some controls, when needed, but tried to be flexible with me.

At home, I could move around and take breaks when and as often as I needed, and I could sit, stand, or even lie down to work on projects, but at school, everything was different.

At school, my teachers wanted it to be very clear to me that I was not in control; they were.

At school, I was expected to conform, rest, move, stand up, sit down, eat, and take bathroom breaks, only when the teacher offered them to me or if I asked permission first, often being told ‘no’ or scolded and shamed in front of the class for needing ‘too many‘ bathroom breaks (which was embarrassing).

School was where I learned that I could intentionally dehydrate myself and avoid eating during the day to take fewer bathroom breaks.

At school, there was a very specific way we were expected to sit and stay seated,

At school, getting out of my seat to move around, stretch, or sitting in an ‘improper‘ way (anything other than two feet flat on the ground and eyes forward) would get me in trouble.

The expectations set for me back then are ones I would still struggle to meet today as an adult.

Back then, and to this day, I still need to move around.

I get up and change positions frequently, and often need to stretch and move while working.

I also still don’t find it comfortable to sit with two feet on the floor.

Most of the time, when I am working at my computer, my feet are crossed on the chair or bench I am sitting on. Sometimes I may recline in other positions, but I almost always have a ‘lean‘ to me, where I am placing weight on my arms, or tipped back with my feet up on something… but feet on the ground and ‘sitting up strait‘ and ‘eyes at attention‘ are all still going to get a huge ‘no thanks‘ from me.

In school, I tried to get creative, looking for ‘acceptable’ ways to get up and move around.

One thing I tried was sharpening my pencils as often as possible, because it was one way we were allowed to stand up without asking for permission (as long as we were quiet). Still, eventually my teacher told me I was “getting up too often“ and made a rule that I wasn’t allowed to sharpen my own pencils anymore.

School was the first place I learned to tune out my body’s signals for its most basic needs (like bathroom breaks, movement, hunger, and thirst).

School was where I learned that I could hold my body tense and tight, and this would keep everything quiet and still (even if it created physical stiffness and pain throughout my body).

School was where I fine-tuned my ability to dissociate, to disconnect from the physical pain of being tense and hyper-vigilant for 8 hours a day or more.

It was also where I learned to repress and ignore my emotions (moving through the world as if everything was fine, even if internally my entire world was crumbling) and where I learned to run and hide and never let other people see me cry (because those were things that would definitely make the other kids, and sometimes adults, pick on me).

As all of this was happening, those in charge of updating the DSM were preparing to release a ‘new and improved‘ version (DSM-4)… but this new version wouldn’t take into account the assimilation, masking, or acquired coping skills that I (and countless other Autistic people) had developed due to having out needs unsupported and being pressured to conform to out-of-reach and unfair neuro-normative standards and ideals. There would be other problems with this new book as well.

I was 7 when the DSM-4 was published (1994).

The first problem with the DSM-4, was that it did not do well to take into consideration that, if left without support and pressured to keep up with the people around us, some Autistic people might develop and adapt ways to do what’s expected of us, and that, because of pressure not to stand out or make waves, some of us would learn to blend in.

There was another significant problem with the DSM-4. Under this version of the DSM, you could be diagnosed with Autism or ADHD, but not both… however, I am both (Autistic and ADHD).

My teachers/school were pressuring my parents to evaluate me for ADHD and other learning disabilities. However, my family (worried about me being labeled with something that would follow me around for the rest of my life) refused to have me tested.

Because the teachers were pushing for a specific, targeted assessment, one aimed at getting to the root of why I was so disruptive to the learning environment, it is very likely that, had I actually been assessed, they would have been diagnosed with ADHD and not Autism (since they had to pick just one).

ADHD medications were becoming popularized in my early school years, and were being made widely available (and encouraged by teachers) to help make hyperactive ADHDers like me more manageable.

I remember the long lines of kids outside the nurse’s door at medication times, pills and white paper cups in hand. Telling a kid to “Take your pill and go back to class” was a lot less work than whatever my teacher was trying to manage me. Still, there was no similar easy option for Autistic children, who were instead segregated and sectioned off with other disabled children in ‘special education‘.

Special education was not a classroom I wanted to be in… the lessons were below my abilities, the other kids made fun of me for it, and the teachers treated us like we were babies. But the general education classroom was not a good fit for me either. They even tried putting me into advanced placement classes a few times, but none of it worked for me.

I was so beaten down by my time in the central Texas public school system by the time I graduated high school that I was convinced I was garbage and incapable of learning.

I never took the SATs or college-prep courses. However, I do have 1.5 university credits in web media and design (that I got in high school from a teacher who only required me to go in two days a week because I could normally do the full week’s work in one class period – Mondays to get/do the assignments and Fridays to present what I’d created).

With what an education costs in the United States, and how traumatic and invalidating my school years had been so far, there was no way I was going to pay for my torture by institutionalized education to continue.

I graduated high school (barely, and only because my Government Economics teacher passed me, since she was the only Government Ec teacher at the school, and she said she ‘didn’t want to deal with me again‘ – which was fine because the feeling was mutual) in the early 2000s.

I was 26 when the DSM-5 came out (2013).

The DSM-5 finally acknowledged that Autism and ADHD can co-occur together and that Autistic people may mask or compensate for Autistic traits due to learned behaviors.

These changes meant I was finally able to be diagnosed as both Autistic and ADHD, and that Autistic camouflaging could be taken into consideration in my assessment. However, there was one problem… I still didn’t know what Autism was in 2013, or that I was Autistic.

In 2013, I was a year into what I would call my ‘quarter-life crisis’.

After turning 25 in 2012 and not yet knowing that comparisons to others can be some of the biggest thieves of joy, I started looking around and comparing myself to other people (non-autistic people) my age.

Lost in comparisons and detached from my own inner compass after years of self-denial and neglect, I started to feel as if I had ‘fallen behind‘ the people around me, which sent me into a panic and started me on an ill-fated and obsessive journey of self-improvement (based on modeling myself, my behaviors, goals, and dreams after other people).

Looking outside myself for who I was supposed to be wasn’t the answer, but I didn’t know it at the time, because I’d been encouraged to look outside myself (and praised for mirroring the people around me) my whole life.

Eventually, after a lifetime of looking outside myself, I forgot how to listen to me (my own hopes, dreams, wants, and needs) and, as a result, I built a life I thought I was expected to have (the house, the car, the corporate office job). Still, it wasn’t a life I wanted or that supported me and my needs.

On the outside, I’d checked all the boxes I’d been told would define ‘success‘, but I was dying on the inside, because it wasn’t a life that gave me meaning, joy, or purpose; it was a life of obligation.

The combination of my life not being designed in a way that met my basic human needs met (sensory needs, communication needs, right to autonomy, and emotional safety), and our boss opting to pay the team in ‘perks‘ instead of a living wage (while expecting us to work sometimes 60-70+ hours a week) was burning me down, driving me into survival mode.

Eventually, modeling myself after my co-workers and their toxic capitalist mindsets, I only had enough energy to work and sleep, so I let everything outside of work that had brought me joy (my hobbies, passions, relationships, workout routine) go, because I was too tired and run down to do anything fun, and also had so much to do I felt guilty anytime I stopped to do something ‘not productive‘.

Because at work, self-neglect and exhaustion were praised and worn like badges of honor, I pushed myself so hard it nearly ended me.

By my late 20s, things were starting to feel hopeless, and with no end in sight, I was starting to feel as if the world would be better off without me.

In 2016, at the age of 29, I was finally diagnosed as Autistic, and it changed everything.

My Autism diagnosis was a tipping point, because it came at a time when I was mentally and physically depleted, burned out as a result of corporate exploitation, and at a crisis point from years of ignoring and repressing my feelings and needs.

My diagnosis saved my life, as I’m fairly certain that, due to how desperate my situation had become leading up to being diagnosed, without that diagnosis, I wouldn’t be here still today.

Neurodivergent people shouldn’t have to reach a crisis point for our differences to be recognized. Still, unfortunately, I’ve met many Neurodivergent people who’ve had similar experiences in the years since my own diagnosis… and we’re just the ones who are recognized.

Knowing what nearly happened to me makes me worry about those still struggling unrecognized, not knowing why life is hard or that things can improve.

Many may never have a chance to learn what I’ve learned (about Neurodiversity and the systemic barriers in play that can hold us back), or gain the ability to find safe spaces and people who will love and accept them as they truly are (something foreign to me for the first part of my life). This thought is part of what drives me and my work… I want to “wake“ all the “sleeping“ Neurodivergent people up (because just knowing was really helpful to me).

Recovering from burnout as a Neurodivergent person is a privilege… but it shouldn’t be.

It took me between five and six years to crawl out of the burnout that led me to first being diagnosed as Autistic and then as ADHD a few years later.

To recover from burnout as a Neurodivergent person, I had to do several things (that not all Neurodivergent people will have the resources, time, or ability to do).

1. First, I had to get to know myself, my needs, and my boundaries, and learn how to speak up and advocate for those needs to be met.
2. Second, and this is the big one, I had to re-design my entire life in a way that honors those needs, by playing to my strengths, and getting support for (or avoiding) my weaknesses unapologetically.
3. I also had to let go of things I thought I wanted, but that weren’t right for me (a job, a house, a lifestyle, and many people).
4. Another thing (that was harder than it sounds) was to start saying “no“ and turning down things beyond my capacity, and to be more realistic about my need to prioritize rest and downtime (even when the people around me are pressuring me to “do more“).

I was privileged to have a partner and support system I could fall back on, privileged to be able to change my career, and lucky that we could downsize our living situation (something that might have been trickier if I had young humans who depended on my care).

In just a few days, I will be 39.

Each day I go without being triggered, without a meltdown, shutdown, or sensory overload, I am reminded of how far I’ve come, and I am grateful that I’ve been able to shift course.

I am grateful that I get to take on work and a career that supports my healing (because there are definitely jobs and situations that could have made everything worse).

I am also grateful for my opportunities for continued growth as an Autistic person, and recognize that even this is something not everyone can access.

As I grow calmer, more curious, and clearer each day, it excites me to think about what I’ll be able to accomplish now that I know myself better than ever and am much more regulated, no longer stuck in a hyper-vigilant state.

I am excited that I get to personally challenge the medical model of ‘Autism’ that says being Autistic is always equated to struggling and inability.

Hopefully, the journey I’ve embarked on over the past 10 years (and continue to embark on) will be helpful to others who read about it. That’s my wish anyway.

If you wish to learn more, there is a recent video interview I did on the subject that you can watch via the button below (episode 2 coming soon).

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