“The day I was diagnosed as autistic was the day I became ‘normal.’ At the age of 40, my entire life finally had context. I finally had a space from which to speak and a foundation to advocate for my son.
Prior to being diagnosed as autistic, my life was very simple. I worked in the film industry as a Production Sound Mixer, and I loved my job. When I wasn’t working, I was cooking or knitting. My husband and I had a simple relationship where we could coexist and where not a lot of social pressure existed. I had no social life and very few friends, all of whom lived far away.
My son was born in 2013. The first 18 months of his life were bliss. He and I were inseparable, and things were beautiful. However, my marriage was starting to experience difficulties, and when my son was 18 months old, I decided he and I needed to socialize. This is something I heard often as a new mother. ‘Make sure to ‘socialize’ your child.’
Alcohol was something I had used for many years to cope with life. I had stopped drinking during my pregnancy, and I was careful not to drink excessively as a mom, but drinking became a social tool during this time. I attended happy hour gatherings with other families or mama lunches over a drink, and it made social time possible without extreme anxiety.
Because my marriage was facing challenges, and our future felt uncertain, I decided I had to return to work when my son reached the age of two. The film industry is not a mother-friendly industry, and after my son was born, I could no longer do the job of my dreams. I wanted to be around as a mother. I adored this new role of mine, all the while grieving the loss of my career.
As I was thinking about my future, I had no idea what to do as I had spent 10 years of my life working in the film industry. In my twenties, I had invested a lot of time into graphic design and web design. It was all I could make sense of, to try again. I dove back into the graphic design workforce, while raising my child without any help. My husband was working out of town a lot, so I was an ‘alone parent’. I started at an entry-level position and worked very hard. Soon, I was promoted. And in time, I was offered other jobs and climbed the corporate ladder. I entered into a deep depression over the time I had lost with my son. My heart still aches for this time.
I had a sweet social network built around my son, and he and I had a group of close friends. These friends really helped me during this time when I had no family support network. But, working, keeping up with social engagements, and raising a child by myself was becoming more than I could handle. By the time my son was three years old, I had a major health crisis. I’d suffered from unexplainable health problems since I was a child, and I was entering a massive shutdown. My whole body was shutting down, and I had noticed my son had started repeating the phrase ‘I’m so tired’ because it was a phrase I uttered frequently. I needed help.
I started seeking medical treatment and finally found a Doctor of Oriental Medicine who helped me get out of my crisis. I worked with him for years, and for some time, I saw him weekly. I was stepping back into my body. Part of my healing protocol was to change my diet, drastically, and to quit drinking. These changes saved my life, I’m certain. However, when I quit drinking, I found I had no bandwidth for socializing. I was still dealing with my health crisis (it took years to get well), I was working and raising my child, and I was barely holding it together.
Without alcohol, socializing became unbearable. I had used alcohol for the majority of my adult life. It took the razor-sharp edges off of life, and I was dependent on that. I hurt a lot of people and lost friends during this time. As I continued to heal, my sensory system became hyper-sensitive, like it was when I was a child. Such sensitivity is a part of myself I love and hate. It is so very painful. However, when life is quiet and controlled, it can be beautiful to take things in with such sensitivity. But my life was not quiet or controlled.
During this time, my son was also struggling. He had been bullied in two pre-schools, which was unacceptable to me, and I was shocked by the schools’ responses. I changed jobs to attempt to be more accommodating to his needs and to our need of being together. He was also dealing with big emotions and sensory issues. He was what many people called a ‘spirited child’. His spirit was a big and beautiful fire. He was my wild child. During a rare playdate, one of the friends who had stuck by my side and whose family was going through similar struggles, suggested I investigate Sensory Processing Disorder (SPD). I started doing research, and what I found blew open my world. It’s true: I saw my son in the descriptions of SPD, but more so, I saw myself.
I started seeing a therapist and started trying to understand ways to help myself and my son, as well as ways to evaluate him for SPD. But my executive functioning and anxiety were intense from working, tending to my health, and raising my child, so scheduling more appointments became overwhelming. It is important to note these diagnostic processes are very challenging. There are in-school diagnoses and out-of-school diagnoses. I worked an hour away, so the logistics of where, when, and how were getting so complex. So, it didn’t get done.
Admittedly, some part of me was ableist. I wasn’t sure these ‘labels’ on my child would be useful. I lived in a very ‘love and light’ town, where these messages were popular. Don’t label your child. Don’t medicate your child, etc., etc.
Time went on, and things were getting more difficult. My son started struggling more in preschool. He has a sensory seeking profile, and when he didn’t get adequate sensory input at school, he would start seeking sensory input in reckless and dangerous ways. Additionally, when I would come to pick him up from school, he would frequently go into full-blown meltdowns. We commuted an hour each way, and some of these meltdowns lasted the entire time or until he exhausted himself and fell asleep. I felt so lost and alone.
I was also struggling with meltdowns, which presented in ways I had never faced before. I am mainly sensory avoidant, and my son is sensory seeking. We also both struggle with executive functioning. So, on mornings when my son was loud and active and very rough, I would immediately get overloaded. If I was behind and he was behind and, no matter how many times I asked him, breakfast didn’t get eaten or clothes and shoes weren’t put on, I would go into meltdown. I hated myself for this. I didn’t understand what was happening.
When my son was five years old, my dad traveled close by for a work trip, and we went to visit him. It was an intense night, at a restaurant, where getting my son to sit in his seat, not bounce around and bump into the waitstaff, and to adjust his volume to acceptable levels, took every ounce of energy and patience I had. My dad saw my distress and took my son to sit by him. He looked at me and said, ‘You know, he is very ADHD.’
I was diagnosed with ADHD in 2005, at the age of 25. As an adult female, late-diagnosed, there was no support for me. So, my diagnosis meant very little to me. It just helped me understand why I started stuttering in my 20s, had a strange relationship with time, couldn’t remember things very well, and had a never-ending and very obscure thought process. But the deeper nuances of what ADHD was, were lost on me. Furthermore, I had the inattentive type of ADHD, which at the time was called ADD, and wasn’t recognized very accurately.
My dad and little sister also have ADHD, and in raising my much younger sister, my dad had developed a much deeper understanding of what that meant. That night in the restaurant, as the words came out of my father’s mouth, I realized—of course he has ADHD.
That was good enough for me. My son, Rivers, was still in pre-k, I knew I didn’t want to medicate him at such young age. So, I felt ok knowing he has ADHD and sensory processing issues, most likely SPD. My job got more intense, we moved to a different town, and life went on with me powering through it all, poorly.
Rivers started school, and there were challenges, but before the school year ended, COVID stormed the world, and everything shut down. The world slowed down, and for the first time in years, I was able to take a deep breath. In the exhale, my world unraveled. My job ended, and the lost time I had grieved of being away from my son was suddenly gifted back to me. I will not ignore or deny the massive impact of the COVID crisis or how terrible and detrimental it has been. However, I can acknowledge and grieve that and also acknowledge the lockdowns and shutdowns were absolutely transformative in my life.
As I watched my son doing schoolwork, and trying so hard to do Zoom school, I saw his struggles first-hand. I realized I had waited too long. This was the time when my son needed support, and I didn’t have it in place for him. I also realized he would likely benefit tremendously from OT, where he could get adequate sensory input and nervous system regulation.
So, I went back to my research of SPD, ADHD, and their diagnostic procedures, respectively. I kept seeing the word ‘neurodivergent,’ and one day I decided to Google it. I was led to several YouTube videos and TED talks, mostly of women, discussing their autism diagnoses and how everything we thought we knew was wrong. I watched these videos of women telling their stories of how they found out they were autistic and what that looked like. I was stunned because the stories of these women mirrored my own. I started researching autism in women, and suddenly the pieces of my life started to come together.
I was a quiet child. ‘She’s very shy. We never hear her voice.’ The super shy child, who was selectively mute for three years of school. The girl who tried so hard, but still got straight C’s and D’s through school. The girl who was ‘so smart,’ but daydreamed too much. The one who was so kind and caring but was naïve and ditzy and gullible.
One day, I saw a post about gender dysphoria, and it explained perfectly the feelings I had felt about my gender for most of my life. I sat at my kitchen table, many times close to tears, as so many pieces of my identity fit into this new space I had found.
Amongst my research, I came across an autism education website with a blog post about an autistic woman, their favorite autistic woman, comedian Hannah Gadsby. Since neurodivergence and autism research was my new special interest, I decided I had to see what she was all about for the sake of research. Hannah Gadsby’s story changed my life. So many parts of her story reflected aspects of my life, and when combined with the many other videos I had seen and the research I had done, I was certain I was autistic. I spoke to my doctor about it, and she agreed (which is a very rare experience for women). So, I started seeking a diagnosis.
Getting diagnosed as an adult and as a woman is very hard. I live in a rural state and was struggling to find any resources. I was very lucky to find a psychologist under the Psychology Today directory who specializes in autistic adults. I reached out to him, immediately, and he said while he did not do official diagnostic testing (which is a very problematic process), he could see me clinically, and give me a clinical diagnosis based on the DSM-V criteria and his expertise. Because of COVID, we were able to start meeting via Zoom. We spent several sessions going over my current and historic autistic presentations. He concluded I was, quite obviously, autistic.
As wonderful as this was, and as much as I loved and still love my therapy sessions with this psychologist, I still had imposter syndrome, and self-doubt. I continued to search out an ‘official’ diagnosis. I was able to search clinicians across the country who were working remotely, because of COVID, and I finally found one. We had Zoom session, and I completed several questionnaires, as did my husband, and within a couple of months I had a diagnosis. I was autistic with inattentive ADHD.
Being diagnosed as autistic was a huge joy because for the first time in my life I understood myself and why I had always felt alienated. I understood why things in my life had been so hard. It even explained my health crisis and the multiple burnouts I have had had throughout my childhood, adolescence, and adulthood. In fact, it explained many of my chronic health issues, as there are very common co-existing conditions autistic people experience. My diagnosis put context to my life in a way I never had before. It was amazing.
But another aspect of learning you are autistic at the age of 40 is grief. I grieved. I grieved not for the diagnosis, but for the lifetime of unknowing. For the 40 years of my life when I did not understand such a critical part of my existence. I’m still grieving. It’s only been one year since I started this journey, and less than a year with an official diagnosis. A process many late-diagnosed adults go through is going back in time and revisiting our (often traumatic) past with new understanding. There is healing to be done for the younger self who internalized all the reasons we failed or were outcast.
I held all these feelings from my new diagnosis, and I turned to my son. I took everything I learned in this process and saw my son in a completely new light. Things can be better for him. But I must act now, so he does not have to process the grief of not knowing and of not being accommodated. The grief of not being seen. I was certain he was autistic and ADHD, just as I was.
For a short time, he returned to school, and it became very clear he was struggling with handwriting. One day, he came home and had a meltdown because he had two writing assignments, instead of just one, and it was painful. The pain and the pressure created stress, and he exclaimed he couldn’t handle writing ever again. I, for one, do not believe a seven-year-old expresses these huge feelings for no reason. And amongst all the research I had done, I remembered coming across a neurological disorder called dysgraphia. So, I did more research. Everything matched my son’s presentation, from the letter formations to the spatial mapping on the page to the pain.
I immediately told his school and teacher I suspected he was autistic, with ADHD and dysgraphia. But the teacher felt unsure. I understood she was trying to build my son up, a common ableist structure, but I was left feeling very unsupported. I did more research and sent a letter and a handful of articles to the school. The teacher heard me and began to see my son’s neurodivergent presentations. When COVID numbers spiked again, we went back to homeschooling, and I knew I would have to have him evaluated before the next school year.
Once again, finding diagnosticians in a rural area proved to be very challenging. I kept getting referred to two places, one with a three-year wait list and another which didn’t take insurance. I began trying to register him in a neighboring state. I would travel the country if I had to, to access services. In a desperate final attempt to find something nearby, Google led me to a place not well known for their diagnostic testing. I was able to get him scheduled rather quickly, and my son went to four hours of a grueling evaluation.
Immediately after the evaluation, my son had a huge meltdown. The day had been so intense for him. I immediately wrote the psychologist and explained what had happened. The following week, we received his diagnosis. He was autistic, with combined type ADHD (hyperactive and inattentive), and he also had dysgraphia. I told my son immediately, and he was happy. The day was a victorious day in our household. Our family is neurodivergent, and we love who we are.
Having a neurodivergent family comes with challenges. I get overwhelmed by some of my son’s sensory seeking behaviors, and I melt down. Meltdowns are followed by shame and guilt. It is common within the autistic advocacy community for people to say: ‘honor the child.’ And, oh, how I feel that in my heart. But I’ve learned sometimes I must honor my needs. We have learned very clear and honest communication about our sensory needs, we are learning to set boundaries, and our relationship is give and take. With every day, I continue to learn and grow.
Everyone asks me, what’s next? My response is: advocacy. I now have the tools to advocate for my son’s and my path in this world. My wish is to normalize neurodivergence, because, in fact, different brains ARE normal. Having a different brain comes with disabilities. Our world does not accept difference, nor does it accommodate differences. And that’s unacceptable to me. My son is beautiful, and bright. He is a star. I will do everything in my power and fight every fight to make sure he finds his way through this world.”
This story was submitted to Love What Matters by Denielle Rose. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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