TIKTOK Saved My Life
Discovering my Neurodivergence at 58
May 2021 was when I started my TIKTOK account, uncertain of what I was going to find or what exactly I was going to use the account for. In the beginning, random videos were popping up on the FYP (for you page). Then I found content repeatedly showing up about mental health and commonly talked about conditions. I watched so many stories from women who considered themselves — late in life — explaining what it felt like to have ADHD. I had never suspected myself having ADHD but I resonated a lot with the videos I was coming across, so I began to follow a lot of mental health and Autistic content creators.
I started focusing on my inner work and exploring more information on ADHD and found the term neurodivergence, a term I was not familiar with until I started watching content creators, then fell down the rabbit hole to learn more about via credible online resources. What I discovered about the topic blew my mind and led to my severe identity crisis. I decided to seek support and see a professional for a diagnosis. In April of 2022, I was officially diagnosed with ADHD at 57, just before my 58th birthday. What was I supposed to do with that information? I started a very aggressive online search for as much information as I could digest about ADHD and how it affects women. I was so hyper-focused on learning everything I could about ADHD that I was sure I was mastering something that could change the world. That was until I realized that my hyper focus and obsession was a symptom of ADHD, one of many that I had that all indicated my neurodivergence. I went on my research journey and found out that if you have ADHD you may be Autistic as well. So, back down another rabbit hole I went.
I took every online assessment I could find and, to my surprise, every one of them said that I may be on the spectrum. I read every article and medical paper written about how autism shows differently in girls and women compared to boys and men. I read up on all the signs in girls and women and realized the signs were there all along for me. I am Autistic! I have always struggled in school, in social situations, and always had emotional dysregulation. I was always called “sensitive”, “overreactive”, and “get over it”.
As of this writing, it is about two months since that realization, and I am still trying to figure out who I am and what it means to be neurodivergent. I have been going through some stages of grief; I am angry at the medical profession for not picking up on the signs over the years. Is it because they aren’t educated enough or is it because they are too lazy to do the work? With the help of my husband, I am gaining clarity around my mental health. I am connecting with others who have been through very similar life experiences on Facebook groups and TIKTOK, people who share a similar lens of how they see the world.
The information I have discovered about ADHD and Autism has helped me better understand comorbidities and how I am neurodivergent. Comorbidities, or the presence of one or more additional conditions often co-occurring with a primary condition, show that you are neurodivergent or differing in mental or neurological function from what is considered neurotypical. ADHD and Autism are considered within a spectrum of neurodiverse conditions. They were once considered mutually exclusive until 2013.
- The American Psychiatric Association’s diagnostic bible held the two conditions to be mutually exclusive: Only in 2013, with the debut of the current “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5), did a dual diagnosis become permissible. But in fact, autism and ADHD often coincide. An estimated 30 to 80 percent of children with autism also meet the criteria for ADHD and, conversely, 20 to 50 percent of children with ADHD for autism. Given the size of the overlap, scientists are beginning to rethink the relationship between the two conditions and to look for common biological roots. The connections could run deep.
- One team in the Netherlands has proposed that autism and ADHD are different manifestations of a single condition with a range of subtypes, each having a distinct time of onset, mix of traits and progression. In this view, ADHD can occur without signs of autism, but autism always occurs with features of ADHD or other conditions, notes the team’s leader Jan Buitelaar, professor of child and adolescent psychiatry at Radboud University in Nijmegen, the Netherlands.
- Autism and ADHD are both thought to involve multiple genes, many of which may individually exert small effects. Also, both conditions are heterogeneous, meaning the specific genes involved can differ from person to person. Adding to the complexity, the nature of the genetic influences can also vary. Some risk factors are so-called common variants — versions of genes that appear in more than 1 percent of the population. Unpublished research posted on the preprint server bioRxiv in November is among the first to find evidence of an overlap in common variants between people with autism and those with ADHD. Other risk variants are rare and tend to occur spontaneously, or may be inherited. Common and rare variants can both involve anything from single DNA letters to larger chromosomal segments encompassing multiple genes.(https://www.spectrumnews.org/features/deep-dive/decoding-overlap-autism-adhd)
- Scientists have long suspected that autism and ADHD share genetic roots. Up to 80 percent of people with autism also meet the criteria for ADHD. Both conditions are highly heritable and often co-occur in families. And some large deletions or duplications of DNA seen in people with autism overlap with those found in people with ADHD.
- The new study suggests that the two conditions share a different type of rare mutation, called truncating mutations: single-letter changes in the DNA that result in an incomplete version of a protein. (https://www.spectrumnews.org/news/risk-genes-autism-overlap-attention-deficit/)
The content I followed led me to take online assessments like the autism spectrum quotient , RAADS 14 Autism test, and Camouflaging Autistic Traits Questionnaire. I scored highly on all of them which highlighted further issues I had since childhood but never equated with being a condition. I realized that symptoms I had of neurodivergence (and still have) were hidden from others because I was always masking in public social situations. Even within my career, I tried to blend in and perform the role of Administrative Assistant for 25 years, constantly feeling overwhelmed as if I wasn’t as skilled as others in my profession. I struggled with self-esteem and imposter syndrome, constantly feeling like I was an outsider or alien in the general public. Middle school was a real challenge for me because I was always teased and picked on in. I learned how to perfect my masking in order to fit in and avoid any further teasing.
TIKTOK videos led me to questioning my entire identity — what I thought I knew about myself — because of the original and authentic content I was following. I watched countless genuine creators talk about feelings, experiences, symptoms, and revelations they had as a “late diagnosed” ADHD Autistic and it was as if they were describing ME. My childhood, my teen years, and my early adult years were all being explained by these neurodivergent experiences:
- Being an enthusiastic talker but closeted introvert, hyper focused on specific special interest topics while having no interest in learning or talking about other topics irrelevant to me. And always asking “WHY” — this one is specifically for my husband.
- Struggling with sensory issues, trouble regulating my body temperature, irritated from by certain textures, emotional dysregulation, lack of object permanence and uncomfortably awkward in social situations.
- Shying away and under-communicating my needs. Difficulty making and maintaining friendships and constantly misunderstanding social cues even with my family.
Realizing that I have been acting “normal” my entire life through masking, I began my self-diagnosis process for AUTISM. My ADHD diagnosis came first via a tele-health assessment with a psych nurse. She then advised me to find a Psychiatrist who is experienced with diagnosing adults for Autism. My Assessment is scheduled for October of 2022.
Why is this a big deal for me? Because there are things in my past that I still obsess over, thinking I had failed my family or was not a good enough mother. I now realize I have learning disabilities associated with autism and ADHD and my struggles throughout grade school and college were due to these disabilities, and never receiving support in school. I also have severe depression, generalized anxiety, and PTSD from being misdiagnosed and masking around others my whole life. I wonder where I would be today had I received the support I needed in grade school.
My generation (Baby Boomer) is considered “The Lost Generation” because the medical field studying autism is now realizing that there are so many people my age or older who were thrown into a mental institution and medicated improperly for something other than autism. Read this article for more information: The Lost Generation of Autistic Adults
I write about this today with such a passion for advocating about mental health and trauma. So much of my life makes sense now after learning from other neurodivergent bloggers and content creators on what it means to be neurodivergent. I am not spending my days beating myself up because I think I am flawed. I am talking about my past trauma as well as my current healing journey.
I hope that I will empower and inspire others on their own healing journey.
