My Late Autism Diagnosis

Since I can remember, I have asked: “why do people do that?” This question was enough fuel for a decade of psychotherapy, and yet my confusion remains. I often feel that I am from another planet. I spent years considering whether souls come from different places and wondering if it could be possible that my soul was accidentally born on the wrong planet. THAT’S how different I felt! I would later learn that “wrong planet syndrome” is commonly shared by autistics. (More on why psychotherapy falls short for Autistics)

As a child I had the telltale signs. I refused to wear anything but pink cheetah spotted stretch pants for months on end. All my other clothes felt tight and scratchy. I hand flapped so much as a young child that my parents continued to imitate the motion well into adolescence to remind me of how “quirky” I was. I ate the same lunch everyday for literally years in elementary school (dry chicken patty, anyone?). I had a meltdown coming home from my first day of middle school because the chicken patties were made by a different brand and they tasted funny. My play was rigid and I always had to be in control. If my playmate did not say the exact right words in the exact right tone at the exact right time, I would have a meltdown. I wasn’t interested in other children, I just wanted to lay in bed and read. I was blunt and direct. I frequently got into trouble for pointing out when adults were wrong. I was awkward in middle and high school. I didn’t understand relationships. I almost never spent time with my high school “boyfriends.” Having a boyfriend felt like something I was supposed to do, but never understood. I tried to copy other girls to fit in better, but it was like walking in shoes that didn’t quite fit. I didn’t really care about hair, makeup and other things I was supposed to care about as a teen girl. I had anxiety… A LOT of anxiety and frequent meltdowns. I became hyper-focused on specific interests. While I never fully learned how to read music, I taught myself to play viola at a semi-advanced level just by listening to classical music and imitating what I heard for hours on end. (More about signs of Autism in girls)

Today, many of us recognize these autistic characteristics, but in the 90’s, Autism was not well understood. It was assumed that because I was intellectually gifted that I was fine. Further, Autism was assumed to be something that only or mostly affected boys. The signs were easily overlooked in girls. This is especially true because, as a result of gendered expectations, girls learn how to mask in social settings in order to pass as neurotypical (NT). This doesn’t mean that NT ways of relating are natural or intuitive for us. (More on high masking Autistics)

As a child, I was exposed to every kind of trauma possible in my household. When I left home and gained safety from my abusers, I suffered from chronic PTSD and experienced new traumas and challenges. During my first year of college, I became pregnant, miscarried and experienced a volatile emotional storm that I later learned was a probable result of severe postpartum depression and ended up hospitalized. At the time, I attributed the rigid patterns of thinking, sensory overload and social challenges that characterize Autism to trauma. Truth be told, many of my symptoms were related to trauma. Autistic trauma survivors can never completely separate trauma from Autism. They are inextricably linked. However, when my PTSD symptoms decreased and I reclaimed my “native” self, my autistic traits remained.

Throughout my young adulthood, I tried to leverage my intellect to navigate the strange and foreign world of NTs. I bounced around to a few different colleges and finally ended up in a supportive learning environment. From then on, college was a wonderful experience for me. I studied only topics I felt passionately about. I got to read and write. I love to read and write! I could finally speak with professors bluntly and directly and not get into trouble for lack of compliance. In fact, I learned that my perspectives were radical and valued. I belonged to social justice circles where truth telling was encouraged. It seemed that (what I would later learn were my very typical autistic) personality traits were celebrated rather than scorned in these unique social circles. With the support of my professors, I applied to PhD programs right out of college and was admitted to every one, and most on a full scholarship. I thought an exciting future awaited me in academia; one were I could devote my time to intellectual pursuits and special interests. However, graduate school was a very different monster. I learned quickly that graduate school is a process of professionalization rather than a place to grow intellectually. It is more about learning how to behave and to fit a role than it is about pursuing one’s passions. This was very disillusioning for me and the complete opposite of where my strengths lie. At first I became aware that people didn’t like me. Professors and students alike tired of my long monologues. They became angry and defensive when I challenged their problematic perspectives. My blunt and direct manner of communication was seen as a personal attack. I was once pulled aside by a fellow student who proceeded to explain to me that I clearly was very smart but that no one liked me and I should try harder to please others. I responded honestly that I didn’t spend much time thinking about other people’s opinions and that it felt more important to speak my mind. He was completely shocked and did not know how to respond. Looking back, I think it was hard for him as a NT person to comprehend that popularity or social standing were so low on my list of priorities. I eventually decided to leave when a professor permanently kicked me out of a class for so-called intimidating students and stated that I should be more “kind, gentle and feminine” if I was going to succeed in academia. I think deep down I just knew that was something my brain wasn’t wired to do. The discrimination was clear. As a person with strong opinions about matters directly related to my life and lived experience, I was being told to shut my mouth, conform to expectations and change my tone to make my colleagues comfortable or face the consequences. Not wanting to play by the rules of the institution, I decided to leave. The traumatic nature of these experiences restimulated childhood trauma and I decided to spend more time working on my mental health. Soon trauma became one of my special interests. I researched and learned everything I could about trauma and trauma informed care. Eventually, I started teaching trauma-informed yoga and mindfulness for children and families. 

I worked well (like REALLY well) with neurodiverse children. They just made sense to me. They were honest, direct and straightforward. If they didn’t like you, they would just say so! If they had a feeling about something everyone would surely soon know about it! This felt easy to me. I could work with this communication style. The thing that was hard for most other NT adults caring for neurodivergent children was the very thing that felt easy for me. I also got to move, play and support healing in a magical sensory world of our own making each week. As an undiagnosed autistic woman, this was a dream come true! I received many requests from parents to work 1-on-1 with their children and eventually I started Embody Play. I went from teaching trauma-informed yoga and mindfulness to delivering a trauma-informed, attachment-focused and play-based intervention for the whole family. 

I loved my work, but it drained me. Working with parents was particularly hard. Unlike children, adults don’t always say what they mean and aren’t as open to direct feedback. I’ve learned that I can almost never take an allistic at face value when I ask, “can I be honest?” and they say yes. Many times people will say they are receptive to new and challenging information that might provoke discomfort, but this is not always reflected in their behavior when those moments do arise. What people say and what they actually mean are sometimes two very different things. For an autistic, because we take statements at face value, this is endlessly confusing. Out of necessity, I learned to be more indirect and to attend to emotional needs in ways that felt counterintuitive for me, but it did not come easily. (More on why people are offended by autistics). I was constantly thinking about how much eye contact I was making, my body language, facial expression and whether I was using the right words to convey information. This is called masking, a process by which some autistics put a great deal of mental effort into appearing NT and relating according to NT standards. When I was straightforward, such as in moments when I felt that harm could be prevented by offering direct feedback to parents, I could expect big reactions. It was a very confusing and scary process. Years of masking contributed to a slew of health problems and ultimately resulted in what I now recognize as autistic burnout. 

The pandemic was a real game changer for me. It gave me an opportunity to take a much needed break from this demanding social world. During this time, I stepped back from in person work and moved to the countryside. As life slowed down and my environment became a quiet sanctuary of solitude, my nervous system became more regulated. During this time I picked up my childhood special interests and started reading voraciously and playing music again. I learned how to play violin, baritone ukulele, soprano ukulele and harp. I read holy books from many different religions, including three translations of the Bible from cover to cover in eight months! (More on special interests). I spent all my time cuddling, hiking and playing with my pets. For over a year, I didn’t interact with anyone but my husband. (More on why many autistics love their pets). My intention is not to romanticize the pandemic. It was a collective traumatic experience and many people suffered. I understand this reality. Yet, as a result of my unique positionality (which includes a level of privilege) I experienced it differently. I want to speak to this reality too.

However, the pandemic wasn’t all rest and relaxation. During this period I began to notice my sensory overwhelm in a heightened way. When I went into town, I became keenly aware of how unbearable the bright lights and loud noises felt. Comfortable clothing had always been hard to find, but my tactile sensitivities felt heightened. Eye contact was EXCRUCIATING… literally painful. (More on unlearning eye contact). At first I chalked it up to an adjustment issue. It is understandably hard to reintegrate into social life after a pandemic. However, after two years of social re-integration my sensory overwhelm was unchanged. I always felt sensory overwhelm, but it was so normal that it became business as usual. The pandemic afforded me the opportunity to interrupt business as usual and recognize how much I was suffering. (More on sensory seeking vs. avoidance). (More on the vocal stimm in the previous video). (More on sensory supports).

When I reconnected with a family member and learned that our family hid his disability, I started to reflect more deeply on my own experience. I questioned the way I took my worldview for granted. Didn’t everyone experience what I experienced? Doesn’t everyone learn and relate the way I do? If so, why have I always felt so out of place? Is it normal to shutdown after a trip to the grocery store? Does everyone meltdown at the feeling of spiky hardboiled egg shells on their finger tips? I started to suspect not. I put myself on a long waiting list for a psychological evaluation. I wanted to get to the bottom of it all. 

The evaluation was eye opening. During the initial interview, the psychiatrist asked me a slew of questions pertaining to different diagnostic criteria. When we got to the Autism questionnaire, I was totally unprepared for how strongly I would see myself reflected in it. I had so many “aha!” moments during this part of the assessment. For instance, I was asked whether I found it hard to modify my behavior depending on context. After a long pause and some confusion on my end, I asked the psychiatrist to repeat the question, which she did. Another long pause. She then explained that most people modify their behavior depending on whether they are at work, home, with family or at church etc. Without thinking, I blurted out “WAIT! People actually do that?!?” We both had a good laugh. My reaction provided a sufficient answer to the question. I then processed how it could be possible that I’ve never noticed this unspoken social rule. The few times I did notice, I actually felt angry with the people around me. I thought they were being fake or manipulative! In another interaction, I was able to define complex vocabulary words but struggled to explain the meanings of common sayings due to literal thinking. Nobody EVER asks you to define a saying, so how was I supposed to know that I didn’t fully understand them? I simply learned how to use them in the right context enough to pass. (More on literal thinking) Predictably, my results indicated that I had Autism level 1 (previously known as Aspeger’s syndrome) and ADHD.

I used to have label-avoidance because I saw how adults used them to pathologize children. Adults blame a child’s label for all the difficulties present in the relationship or environment instead of reflecting on their own and the system’s role in the outcome. It’s too easy to believe that a child won’t or can’t do something because of their label, then it is for an adult to admit that they are abdicating their own responsibility due to a lack of support or skills. It’s too easy to think, “this child hits others because they have Autism” then it is to think, “it’s my responsibility to keep this child safe, but it’s hard for me to set limits because I’m being triggered. I need more support and skills.” As a result, I saw labels being used to effectively displace blame for society’s shortcomings onto vulnerable children who need the support of a village. I wanted no part in this. However, since being diagnosed, I see how liberating it can be to truly know and understand oneself. I am learning how my brain works and what my body needs to function well and feel safe in the world. I am reevaluating the guilt and shame I carried with me for so long because I couldn’t just be like everyone else. I now have legal rights that protect me should a university professor want to kick me out of a class because I am being too blunt and direct. These are all improvements to my quality of life.

Like many newly diagnosed autistics, Autism became my newest special interest! I am currently devouring every book I can find on Autism over the last several months and particularly enjoy memoirs written by autistic women. Hmm, I wonder why?! I learned about different theories, models and compared different supports. Like most of my special interests, this turned into a career. I am now inviting other neurodivergent people to join me in a process of collective (un)learning and healing. I am particularly excited to continue offering services for children and youth because the vast majority of resources operate from a medical model that supports behaviorist interventions that treat neurodivergence as a problem to be managed and cured. Instead, I aim to draw from a social model and offer an intervention that helps neurodiverse populations understand neurotypicality as a source of oppression and to better understand and embrace their neurodivergence. (More on neurodiversity as the reality of the world).

I am particularly interested in how neurodivergent adolescents and adults can leverage their ND traits to live meaningful lives. As a high masking autistic woman, I learned compensatory strategies that allow me to hide my autistics traits and appear NT. I continue to mask my Autism as needed for safety and security. However, learning to unmask has been a powerful tool for healing. Allowing myself to stim, break eye contact, use sensory supports and ask for help has expanded my tolerance for social interaction. For instance, the other day a friend said something in a confusing tone. I admitted that I wasn’t sure if she was being sarcastic and asked her to tell me directly if she was or wasn’t. She didn’t skip a beat and explained that she was in fact being sarcastic and my confusion was resolved. Small supports that help me make sense of a very confusing social/sensory world make all the difference. I want everyone to have these skills.

After a life of many twists and turns, this is where I find myself: still living my life and doing my life’s work, but differently. The difference is that I now know and embrace my Autism. I am starting to question what it means to work therapeutically with people and not fall back on masking. I am re-evaluating some of the things I learned, taught and practiced. I am learning about my support needs and practicing advocating for myself. Most importantly, I invite you to join me in this process. Let’s learn and heal together.

I no longer feel so alien to planet earth.

Love,

Leticia Garcia Tiwari