After a formal evaluation, I have known for three years that I am autistic. Now, at the age of 41, I recognize the significance of this in my case. An impactful influence on my mental health would be ignored without the hunch to have me assessed. Unfortunately, I have observed that a medical autism diagnosis is not yet guaranteed for all age groups. The autism community is also a diverse group of people whose needs are not being met because we still face many problems. One of them is masking.
Although I can now identify numerous positives about being autistic and have a better understanding of it, my late diagnosis has inflicted emotional trauma. For years, I was unaware I had masked authentic autism or the damage it caused over time. So, I am still coping with my otherwise empowering diagnosis. To meet our needs, the diagnosis of and life with autism should be re-evaluated using primary sources.
In August 2019, a formal assessment and evaluation confirmed I was autistic. Two months later, I turned 38. Due to inconsistent yet readily available modern resource data, counselors, and psychiatrists, it took nearly three more years for me to understand a simple truth. Autism neurologically influences how I function as an individual. Our neurology causes important differences in how we think and experience our lives compared to someone who is not autistic. This is called neurodivergence.
If research indicates autism emerges during childhood, I would point out that this is with or without a diagnosis. Using my firsthand knowledge and my discussions with fellow autistic people, I have concluded that knowing with certainty that we are autistic is essential. Otherwise, there is a diminished chance to cope with the concerning social issues affecting us. My life experience is a superb example that knowing is half the battle.
In the years leading up to my 2019 diagnosis, seemingly unrelated behavioral problems impeded my life. Nothing anyone tried had any overall effect, and neither did I fully integrate into society. Now, I have observed a probable cause. Autism creates complex neurological differences in behavior that vary from person to person across a multitude of demographics. Autism is also not uniformly taken seriously.
Unless the source of the problems is identified, autism’s complexity can make it difficult to effectively address the traits one at a time. What affected all of my behavior was finally revealed when I was diagnosed. I was empowered by the knowledge, even though I would not conclusively understand autism until 2022. Like an x-ray for a broken arm, I could begin questioning why I was having so many problems. Though not everyone is fortunate to be diagnosed. For example, I was almost overlooked.
From 1990 to 2008, before autism was understood, I had specialist care for attention deficit disorder. I finally tried to address the entirety of my mental health in late 2016 because acute stress was causing an imminent risk of suicide relapse. Without the counselor I was fortunately assigned to, but not until 2018, the unique eight months of weekly sessions to understand me, a chance decision to have me try Dialectical Behavioral Therapy, which led to the suspicion I was autistic, or her decision to act on the hunch, it is clear to me just how lucky I was to be diagnosed.
If no one suspected I was autistic until age 37, then such a low probability of diagnosis needs to be taken seriously. I have also discovered evidence indicating that autism diagnoses are still missed across multiple demographics. Despite the majority of assistance and funding available for those under the age of 21, they are not always diagnosed.
Earlier this year, I was offered a presentation opportunity if I could write about autism resource needs and acceptance issues beyond age 21. As I worked on it, I shared my developing knowledge with my peers. As a result, three people confided in me, believing they were also autistic. At the same time, on social media, I observed a pattern of information indicating other autistic people were unable to attain a medical autism diagnosis. Some were references from parents of children under 21.
Concerns were urgent enough that experienced autistic peers were being asked to help. I decided to carefully and thoroughly discuss my knowledge of autism with those three people. Surprisingly, all three demonstrated a distinct probability of having autistic behavior. All three were unable to afford a medical diagnosis. All three are over 21. One is also an African American ex-convict whose autism, in my opinion, contributed to his incarceration.
Consider the case of Osaze Osagie. In March 2019, Osagie, a non-verbal autistic Nigerian American, was confronted at his home by police officers who were attempting to serve a mental health warrant. Due to their lack of experience with non-verbal autistic behavior, they triggered Osagie to overreact and rush at them while he was in possession of a knife. The officers shot and killed him without first trying to subdue him using non-lethal means. I was diagnosed in August.
Six months later, before I understood my autistic behavior, I attempted to seek referral assistance in-person at a facility. I discussed having my suicide survival story published the previous month. A false report was made to the police. The matter deteriorated over the next two years. So, I filed an Affirmative Action complaint. They lied on the findings report, and I lost the case. Regardless of diagnosis, this is how autistic people live their lives.
For me, being unpredictably unfiltered has increased the frequency of social conflict I experience. Missing social cues and oversharing have ruined most of my dating opportunities. An untold number of job interviews have been affected by oversharing. Long-term masking has likely compromised all of my career decisions. My work history lacks enough productivity in one field, which hurts my employability. I have not integrated into society despite a college education and previous gainful employment.
I am more susceptible to and have been victimized by numerous incidents of defamation and discrimination. I was also at risk of harm from the intentionally falsified report to the police. Autistic developmental setbacks have reduced my quality of life through prolonged anxiety and depression. To put the disruptive impact on our mental health into better perspective, here is a much closer look at what daily autistic life is like.
Over the years, I have been bullied often enough for the pain and terror to remain fresh in my mind. Terror is not limited to bullying. I have been ruthlessly vilified for seemingly harmless things, such as asking about a faint bald spot at the top of a female co-trainee’s hair. Months later, I found out she tried to get me fired every chance she could. I patted a woman on her shoulder to convey what I thought was much-needed moral support.
Management treated me like a criminal and withheld what I did wrong until the next day. I had no clue, nor was I able to sleep that night. Politics have caused so many conflicts that I constantly live in fear of expressing many of my opinions. Instead of acceptance, I get mercilessly mocked by people who condemn my white skin color as racist. Imagine how I feel. Yet, I honestly do not want to offend anyone. So, when I fail to avoid honest communication mistakes, I feel terrible about it.
As an autistic person, talking about depression is risky too. Above a certain level of severity, the average person cannot cope with emotional information. In four separate incidents, I confided in peers whom I assumed I could trust that I was suffering from long-term depression. Each time, they panicked and called a suicide hotline. In one instance, a state trooper was sent to my parents’ house, where I lived. It frightened them — and me. All I did was express melodrama.
I was unaware of the complications that oversharing can cause. Either incident could have easily disrupted my living situation. Having fewer people to talk to about depression is hard, too. As an experienced suicide attempt survivor, I recognize how problematic these miscommunications are in general. Unfortunately, being unpredictably unfiltered goes beyond suicide hotlines. There are some feelings I know I cannot openly share.
Words do not convey the sorrow I feel from years of dating failure or the helplessness accompanying it. I only have two online friends I can talk to about this, which is not nearly enough. Neither do I have a partner to rely on, as many others conveniently do. I am constantly influenced by social pressure to have companionship. Biological impulses lead me to desire it every day. People used to tell me, “You will find someone someday.” So, for 20 years, I kept trying because I was a realist and had time.
The ones that “got away” are now painfully etched into my mind. With misery, I watched as life literally passed me by. There was nothing I could do. Using Facebook has also been particularly toxic. Wedding announcements, baby pictures, and holiday family photos with children now grown up. Meanwhile, I missed the ideal time to settle down and have my own. Unlike many of my peers. Imagine how this makes me feel…
People frequently treat such a state of mental health as toxic rather than attempting to help. I understand the challenges for a friend, relative, or acquaintance who might not understand a person’s mental health. Perhaps you do not know what to say or are too busy. Honestly, I can understand that. We still suffer anyway because we do not always think before we speak or know who we can trust to talk about our problems. In some cases, even long-term friends are driven away.
Thankfully, family and friends have been more supportive of me these last two years. Keep in mind that other autistic people have it worse than I do with neurotypical communication problems. Those such as Osaze Osagie depend on outspoken advocates like me to ensure all our voices are heard. However, my late diagnosis has had another impact on my mental health — one so deep that I am not sure the extent of its impact.
For years, I have felt an unexplainable difference between me and most other people in my life. I used to believe it was because I did things differently or did not fit in due to peer pressure. Who else makes a sandwich with pumpernickel bread, peanut butter, cream cheese, and ketchup? I am proud of it. Now, I am slowly beginning to understand that this was the result of my neurodivergence.
Without knowing I was autistic, I often had to mask this natural part of my behavior when my autistic nature conflicted with the rest of neurotypical society. Eventually, I took this suppression for granted and let it influence what I should be doing and how I should feel. One of the biggest consequences was inconsistent career decisions based on my flawed decision-making. However, since autism is rooted in my thinking, I have uncovered a trauma of epic proportions with deep psychological influence: a neurodivergent identity crisis.
Who am I is the quintessential self-awareness question every human being experiences. For those who are autistic, our thinking is where we diverge from everyone else. Our awareness of self is the most basic thought affected by neurodivergence. On its merits, I have found it to be quite fascinating. Autistic people think outside the box of common ideas. This means we have boundless natural creativity. Conversely, what are the consequences if the very notion of who we are is affected?
I do know how this has made me feel. Once I was late-diagnosed and the long-term masking was exposed, I realized I did not know who I was as a person. I was living a lie. This is as deep as an identity crisis can be. I have no way of knowing when it will subside at my age. If autism is taken seriously, we can be diagnosed sooner, and masking will decrease. Yet, for me to properly cope with all of my mental health issues, my diagnosis is still essential.
It is preferable to be late diagnosed than to be unsure whether we are autistic. I have learned a lot about autism this year and can now cope with my all of my mental health needs. But I was almost not diagnosed. Evidence suggests a medical diagnosis is still not guaranteed for everyone. Without acceptance, we struggle to adapt to life in this neurotypically dominant society. In one public interaction, we may have no problems and deceptively appear to be accepted.
Conflicts in the form of youth or adult bullying, defamation, discrimination, or life-threatening circumstances will continue to occur in the future. I have also uncovered deep psychological trauma from long-term masking. Now, I am stuck trying to redefine who I am as a person at age 41. By drawing attention to the problems with the diagnosis of and life with autism, I hope to emphasize the need for addressing our concerns as soon as possible.
