Thanks for coming around to read my words and experiences. This is my first blog post on this site, and I’m thrilled that you are here and that I have an opportunity to share my story. This post is a lengthy one and focuses on my story of how I discovered I was autistic.
*Trigger and content warning for mentions of certain topics that cover things such as medication, mental illness, abuse, and self-harm.*
I am proud to be autistic. It’s not something to be ashamed of. It’s not something to hide. It’s worthy of pride in ourselves and acceptance from others. I love my mind, and I love the way it works. Sure, I have my own struggles and challenges – but these aren’t because I am autistic; they arise because of the external systems in place that are not designed for neurodivergent people. They are steeped in neurotypical social standards, ableism, expectations, and judgment that can prevent forward motion when there is also a lack of support. When I am in an environment that is accommodating to me, or if I am allowed to create my own environment; I thrive. I love being autistic. I want others like me to feel the joy and pride of being autistic as well. When we are given the ability to practice autonomy and exercise our right to choose how we exist, these hardships often tend to improve. Improving these hardships is a large part of my advocacy, and it is my hope that by sharing a bit of my origin story you may glean hope from it too.
My Experience in the Public Education System:
Currently, I am 34, and I was first diagnosed as autistic at 27. My autism diagnosis was later in life than most, and while I feel that life would have been a lot easier if I was made aware as a child, I am grateful for my journey despite the challenges. Before receiving my diagnosis 7 years ago, I really struggled with understanding myself in my youth. Like many other autistic folks, I grew up with an IEP and was in special education. A lot of that experience was complicated, especially back in the ’90s when our cultural understanding of disabilities and neurodiversity wasn’t as evolved and as inclusive as it is now. I was sort of the poster child in the 90s for the over-medicated, misdiagnosed “Ritalin generation.” I moved a lot growing up, and a huge part of that was due to my family trying to find the “perfect school system.” (Spoiler alert; it didn’t exist, and still does not, though it is a lot better now than it was 20 years ago.) I was first diagnosed with ADHD at the age of 4, and sensory processing disorder at 5. (The only two correct diagnoses that still exist from this time.)
I was placed into “special” education and received my first IEP in 2nd grade. From 2nd grade, all the way up until 10th grade I was in some sort of secluded resource classroom. This seclusion was just not from the general classrooms but also from most of my peers as well. This seclusion led to me always feeling dehumanized and “othered” as a child. With countless therapists and psychiatrists, and countless meetings with teachers, I felt as if my childhood was placed under some sort of constant microscope. I was a fairly calm kid, but I really struggled with feeling misunderstood and I wasn’t given accommodations that best served my needs. Due to these challenges, I would often exhibit self-destructive “behaviors.” I use the term “behavior” loosely here because I now understand what they really were, a cry for help and a way for me to communicate and be understood the only way I knew how. Looking back and knowing I am autistic, these were clearly “meltdowns,” and not tantrums or behavioral issues. They were a reactionary response to not having the accommodations I needed. These would often lead me to being seen as “problematic,” a “disturbance,” or “attention-seeking.” It would create reinforcement to my teachers, therapists, and elders that there was something wrong with me that needed to be fixed. It would lead to being placed in seclusion rooms for “punishment,” it would lead to problems of disagreement with my parents in IEP meetings with educators, and it would ultimately lead to another misdiagnosis, another medication I should have never been on, and a few times; lead to us moving to find another school district that could “help.” It would become like an ouroboros. A repetitive cycle of a lack of accommodations and understanding led to me “behaving” in a way that would be deemed challenging. I was placed on heavy medication, and many of them were best suited for people who had the correct diagnosis that they were used for, not the actual neurology that I had. I was given diagnoses based not on the root of the issue, but the symptom of it. There wasn’t a panoramic viewpoint of my situation, but rather, a single pointed focus on how I was “unable to conform and adapt” to my peers and the environment. It was not based on why I was struggling, instead, it was based on how I acted when I wasn’t being given the time, understanding, or accommodations that I actually needed. It was a very pathologizing view, and it led to years of severe mental health issues, even leading to two suicide attempts and in-patient hospitalizations before I turned age 12. I’m not saying I am against medication, as many prescriptions have been really beneficial to me. I am just very much against giving someone the incorrect medication based on an incorrect diagnosis that they themselves did not have and an incorrect understanding of what someone’s actual challenges are. I was only reacting to the situations I was placed in, I was only pushing back on how I was treated, and I was only responding to the environment I was given.
My parents were always supportive of me, and they really did their best. There was a time when I felt bitterness towards them, but in hindsight, I know now they were doing the best that they could with what tools they were given. It was the system that provided them with those tools and directions that weren’t beneficial. There was this bizarre kind of oxymoron between my testing and my actual performance. I would read books well beyond my grade level. I was obsessed with learning independently and from resources that weren’t available or given to me in my school setting; all sorts of topics that I was deeply interested in. This was a clear indication that the system was not accommodating to different neurotypes and learning styles. This led to a lot of misunderstandings and confusion in IEP meetings. I would score at a college reading level in 4th grade but would test well below my age group in social skills. My mother was always so outspoken and defiant towards those in the meetings who would read the results of these arbitrary and ridiculous tests that did not fit with who I was. I was given many different labels that would view me in ways that would reinforce these feelings of separation. I was labeled as “gifted and learning disabled.” Nearly every one of these meetings would lead to my parents being livid and advocating for me in a way that wasn’t being heard by my teachers and therapists. The educational system failed me, as it has for so many others like me. I was never given the tools to learn how to navigate through that system, I was shrugged off as “too challenging” of a student. I never learned how to navigate school and I never learned how to study in a way that caters to my neurodiversity. The problem is, it was never about my intellect, it was never about my drive. I tried harder than most, but was never given the correct environment or the correct accommodations.
In high school, around my sophomore year, we moved from Colorado to California and entered a new high school. This was the first time in my entire education I was taken out of traditional “special” education classes. Perhaps it was my family realizing the approach they were taking and the trust they had placed in the system wasn’t working. I was instead put into a small resource class, with about six or seven other students. Instead of desks and chairs, there were couches. Instead of memorization of texts and test-taking, there was kinesthetic style learning and open discourse. Instead of being seen as children without autonomy, there was respect and being seen as peers by the teachers. Instead of seclusion, there was solidarity and access to “general education.” The entire approach was based on person-centered care and the humanist approach. It worked. It worked well. I started getting better grades. I started feeling heard and understood. Despite these newfound accomplishments, high school was an incredible challenge for me from a social perspective.
Navigating Social Skills & Settings:
These challenges extended well past the school setting. Growing up, any social event was a massive hurdle for me and my family. It was tough getting out to eat as a family, and going to social events or gatherings because everywhere we went was too loud, too bright, and filled with too many expectations I could never meet. (Explains a lot in retrospect.) To add to that, I never really had many friends growing up. I had extreme interests, and my social interactions were generally focused on those interests. I was bullied a lot for my way of communicating and expression, I was often seen as “the weird kid” who flapped when talking, the strange boy who couldn’t hold eye contact or a conversation in a conventional manner. Despite being a loner, I was always friendly with strangers and was always so happy to meet new people, but making friends was nearly impossible. I found over time, I just preferred to be alone. Sure, I got lonely seeing my siblings make friends a lot easier than me or the neighborhood kids out and about playing together, but over time, I found peace in my own solitude. At first, that solitude was forced upon me, but over time it became a place I could be free of the extreme pressures of feeling pathologized by the adults in my life. It was a place where I could feel free to be myself without the feeling of judgment. This led to me being an introspective child. I was always questioning myself, my place in this world, the systems we exist within, our social norms and roles, and what I really am deep down as a person. Funny how this was why I was always labeled as “an old soul” by those in my childhood. I’m not so sure about that label, but there was a foundation of truth in why I always sought answers to questions that were never given to me. I wanted to know and deeply understand “why” I was the way I was. It wasn’t until I was an adult I would finally get the answers, but more on that later.
Punk Rock & Community:
Around the time I was in high school, I started getting into punk rock. For the first time in my life, I felt I had found something that understood me even with being a weirdo, a misfit, and a social outcast, it was accepting of all of that. The music scratched that itch of needing solidarity. It gave me release, and that raw untapped fury of angst towards an oppressive system was like a drug. Being introspective growing up, I always had deep feelings that the world we live in was broken. I had always believed that the system catered to the few and not the many, it rewarded the privileged and those in power and not the disenfranchised and the marginalized. Punk was the avenue that gave me hope and understanding of these feelings, and I dove headfirst into it. I’d love to go more deeply into this, but that may be a story for another day. Regardless, finding punk helped me more than anything else I encountered so far in life. I began to question outside of myself and stopped seeing myself as a problem, and began to see that perhaps it was the education system around me that was.
Dropping Out of School & Finding Employment:
We lived in California for a few years but later on moved to Connecticut and I made the decision instead of finishing my education, it was time for me to leave. So, I did. I dropped out at 16, found a part-time job, moved out of my parent’s house, and chose to live my life the way I wanted to live it. Throughout my early twenties I worked in retail as well as several highly set positions within the field. It was soul-crushing, and I felt I wasn’t doing anything to better myself or more importantly, better the lives of others. A large driving factor in my life pursuits has been to live as altruistic as possible, giving what I can to help others better themselves. I think that this passion came from knowing what it’s like to not feel cared for-and I never wanted anyone else to feel the way that I did. I needed more out of my position in life, something more fulfilling. So, I went to look for work outside of just selling merchandise to others and being a cog in the capitalistic consumerist culture we live in.
I had no idea where to look, but I know I wanted to find a job that had its foundation in service to others. That’s when I remembered the work that I did in high school being a student volunteer in the high support needs special education classroom. I worked my free periods helping out a few of the students in there with lunch, tutoring, and just spending time with them and being a friend. It struck me that there had to be something like that in the working field that I could find.
I found positions working as a direct support professional at a day program/group home that had residents and participants who were disabled. For the first time in my adult life, I felt fulfilled in my work. I loved what I did, it brought me so much joy. I worked at a place that not only respected people, but understood their struggles and honored them. Not only that, I began to notice a growing sensation of solidarity towards my clients. Especially with being misdiagnosed, I had always assumed I was anxious, neurotic, weird, obsessive, and overly sensitive to everything. Working in this field helped me a lot, gaining understanding from my superiors and coworkers. But the most amount of growth came from the people I worked for; the students, residents, and participants. They understood me better than anyone else, and it was mutual. There was a unspoken mutual kinship centered around compassion and immense empathy. This time in my life led me to the realization that I could be missing something that was crucial to finding the truth in myself. It became clear that there were qualities that we shared, something still so intangible and hard to grasp.
I had gone through my entire adult life feeling different, alien, and ostracized. I never really understood why I struggled the way I did, and I blamed myself with immense judgment for all of it. Why can’t I handle my environment? Why can’t I make or keep friends? Why do I always feel so “different?” Why am I so obsessed with these certain topics? Why do I melt down when I am overloaded? Why don’t I understand social rules and constructs? Why can’t I function without a routine? Why do I feel this deep seeded need to move my body in certain ways? The list went on and on and on. And the guilt ridden judgment inwards continued. The judgment from others continued. With that, my mental health was always in shambles. But, there was a change in my perspective working in that field. With the empathy and kinship I felt with the autistic people I worked for, I gained an understanding. They are just like me, and I am just like them. However, there was a long period of time that I didn’t really conceptually understand this point, and I didn’t consciously admit it to myself. But it was a deep feeling, something that reached my very core.
‘Figuring Out’ I’m Autistic:
One day, I was out for lunch with one of the guys I worked for. He was autistic and was about 35. Really sweet guy, he worked at a Waffle House and loved his job. It was a joy to be with him and see how passionately he took his work and the independence and freedom it gave him. I loved sitting with him and just having mutual conversations about our experiences, and our deep shared loved for astronomy. On this particular day, I was going on a rant about nebulae and Carl Sagan. I remembered that he turned to me and said, “Dani, I am really glad that I have an aide who is also autistic.” It hit me like a lightning bolt. The sensation of gravity felt like I was being sucked into a black hole. I kinda froze up, and then everything clicked at once. Holy shit. Oh, man. So, that’s it! It all made sense at that very moment. All the pieces fell into place, and years of not understanding myself finally started to vanish. That simple statement changed everything for me and it sent me on a trajectory of self-discovery. I was taken back for days, how did I never put two and two together? How did he know? He didn’t know that I had never considered being autistic, I never spoke about it because I didn’t l know, nor did I ever consider it. But he did. He knew because he saw something shared between us. We spent a lot of time together each week, and he was the first to point it out to me.
A few weeks later I found groups online, mainly autistic spaces and self-advocacy groups. I started to have a dialogue with others, I read and read and read, and the more that I learned, the more everything made sense. The more I hung out and listened to the experiences of other neurodiverse people, the more I began to better understand myself. I soon afterwards started to self-diagnosis. It took me 4 years to finally see a professional. I was 23 at the time I had that life-changing experience, and I soon began to see the larger picture that I was missing and I self-diagnosed. I was diagnosed ADHD and SPD at the age of 4, and while I related to these diagnoses I began to realize that this wasn’t the full story.
At 27, I made the decision to reach out to my former school districts and requested my scholastic records and history. I received over 300 pages of everything. Every IEP report, every meeting I ever had with a therapist, doctor, therapist, hospital visit, and every diagnosis and medical record I ever had. I dedicated weeks to reading through it. It was one of the most challenging tasks I ever set for myself, but I am so glad that I did. It was a little traumatizing to read through every word on every page of this documentation. I realized there was a lot of trauma and a lot of repressed memories. It was like opening an old wound, but I knew that in order to get the answers I needed, it had to be done. I decided it was time for me to seek out therapy and a specialist on my own time, and by my own power. It was time to get the answers to the questions I had for so long. A few months later, I found a neurodivergent therapist. I brought in the tome of paperwork I had struggled to get through into my meeting. I explained my experience, my story, and my self-diagnosis. Fortunately, I was almost immediately validated by her. Within the first 30 minutes of our first session, she simply said; “Yeah, you are right about this.” I said, “I am?” She responded “Yeah, within the first 10 minutes of meeting you, it was very apparent you are autistic, and after hearing your story and past it’s unfathomable to me that no one ever even bothered to bring up autism to you and your family as a child. I am sorry you have struggled with not understanding this for the entirety of your life, and I am sorry you have missed out on a proper diagnosis. It must have been really hard not having the answers.” Those words she spoke and that first session had the most profound impact on me. It was utterly life-changing. I can’t even put into words how important that meeting was. I was so overwhelmed by it for quite some time. She helped me understand throughout our sessions, she led me to learn about neurodiversity and the community, and I am so grateful for the time I spent with her. I finally got the answer. The answer changed everything. I went 27 years without knowing who and what I am. Now, at 34 I am proud of who I am, I understand myself, and I am no longer ashamed of being different. I can advocate for myself because I have these answers. I can advocate for others because I know how hard it is to navigate through life being different, misunderstood, and ostracized.
Creating Self-Advocacy Through ‘The Punk Rock Autistic’:
As time went on, I was still working within group homes, day programs, and as a paraprofessional. The more I learned about autism and disabilities, the more I found myself seeing the same problems in the system that I experienced as a kid. I found becoming nearly impossible to continue down this path of employment. In another article, I’ll write more and dig more deeply into my experiences of employment in the workforce, but for now, I’ll just leave it at this; being part of a disabled community made me realize even more how problematic the system is, and that this system that is “designed for us” doesn’t include us. Our perspectives and experiences are often ignored. We aren’t given self-autonomy. We aren’t given the opportunity to make decisions on our own behalf as an individual and as a collective. It got to the point that by seeing all these cracks in the wall, it finally crumbled before me. I could no longer be a part of something that negates the experiences of those it claims to serve. So, I made the decision to dive deeper into my own community. Instead of just being a member of groups, I decided to start my own with others. I joined in with the voices of my own community to fight back, share our experiences, and educate others about them. This was a turning point for me, and as these groups and communities online grew, so did my desire to advocate for myself and my own experiences. I left working in my field, I left knowing that while offering direct care has it’s benefits for many and their needs, it would never give me the chance to change anything. I could not change the system while being an active part of it. So, I decided to start my own platform. In 2019 I created my first Facebook page under the name “The Punk Rock Autistic.” I felt that this name was fitting for my DIY ethos and my drive for social justice and intersectionality. I created this page under the slogan, “Challenging the status quo and smashing stereotypes on what it means to be autistic through self-advocacy and the neurodiversity paradigm.” Two and a half years later, the page grew to where it is now; 34,000 followers, countless opportunities to share my own experiences, a chance to educate on the autistic experience, amazing opportunities to network with incredible other neurodivergent online activists, and most importantly, finally have a place to really feel like I am doing something that really matters. Now, at the tail end of 2022, I have launched my own site, I’ve started my own education and consulting business, and I finally feel free. I have come a long way, but there is still so much more to go. It’s a journey, and I am so glad to finally have the chance to pave the road on which it is built, by my own means, and my own efforts.
Thanks for hanging around to read through all of this. It wasn’t easy to share. Hell, it wasn’t easy to write. But nevertheless, thank you for being here and listening to my story. This is the first “real” essay in a lot more to come. I hope that this platform can continue to serve as a means for others to find solidarity and relatability, and know that they aren’t alone in being autistic. Here’s to a better future, and more importantly, here’s to you.