Without sufficient social or economic integration, a person’s mental health will deteriorate. What is it like for autistic people?
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Of all the things I wish that I knew before I graduated high school, social and economic integration were not on my list. Neither would I know how difficult both would be until after I discovered that I am autistic years later. Explaining what they are is simple. Talking about what life has been like without them will be stressful and difficult. Although I have been mentioning these terms a lot this past year, the combined impact from lacking socioeconomic integration is perhaps the biggest source of stress I have ever experienced. My delayed autism diagnosis is the cause. Autism is defined by the NIMH as being neurological and developmental. It is my hope that by discussing this here I can demonstrate why integration is important for autistic people.
Let’s begin by defining what social integration is. Social integration begins with social development during childhood. As a child ages into maturity, they develop social skills based on their ability to communicate and the social interactions with people around them. During this time, a number of internal and external factors influence how the child’s social development progresses. For example, non-verbal autistic children experience greater difficulty because they naturally communicate differently. As you progress into adulthood, integration occurs as you create and maintain friendships, bond with relatives, or attain a close relationship with a partner. This then forms a social support network that you utilize and rely upon for a variety of needs.
Economic integration similarly begins with economic development during adolescence. As teenagers approach the age of 18, scholastic courses in high school attempt to prepare them for life as an adult. They may also attain menial employment, choose to pursue attaining skills for a technical trade, or get a college education. During this time, teenagers will begin amassing employable skills as well as work experience that will develop as they age. Depending on the timing, choice of employment, and level of success, integration occurs as you attain consistent employment required for independent living and future financial stability. This then facilitates social development and forms the basis of the socioeconomic integration needed throughout life.
Autism is known to involve complications with development into adulthood. However, leading mental health experts have excluded those of adult age and greater functionality from their research. So I would like to provide my firsthand experience to demonstrate what lacking social and economic integration can be like. As I aged into adulthood, I recognized something was not right about my life. At the time, though, I did not know the reason why. Eventually, I turned to the autism community because I was forced to figure out why I was so far behind my peers. I observed and learned from autistic adults and reflected upon my past during these last three years. And learn I did. By the time I finally figured out the truth, I was already too late.
In early junior high school, a professional psychological evaluation identified that I had considerable difficulty socializing with my classmates. For my part, I was largely unaware of this. All I wanted was to be accepted and find meaningful friendships. Some of my peers used to think I was bossy and focused on myself too much. I thought I had changed those personality traits. Beginning in fourth grade, I started to get bullied a lot. I never knew why I was so quick to react and incited some of it myself. I routinely said stuff without thinking before I spoke. No girls I asked to dances ever wanted to go with me. Although I did cultivate cherished friendships in senior high, I never felt I belonged with anyone my age. Life at school was miserable. When intervention could have made a difference, experts responsible for my future chose to do nothing.
Life at home was not much better. My parents were born shortly after the Second World War in what is known as the Baby Boomer generation. They did not grow up having awareness of unseen disabilities. At age eight, when I was diagnosed with attention deficit disorder (ADD), I received specialist care and was prescribed medication. But my parents believed it was not an excuse. My behavior was my responsibility. Discipline was often an issue. The specialist also alienated me. I could not turn to him for support. So I spent more time by myself. No one was able to bond with me. My parents did everything they could to provide for me. Kids in broken homes did have tougher childhoods. But at some point, I started talking to myself for comfort. My brother was also estranged from me as well. I honestly did not feel I was part of the family.
Remarkably, something happened during junior high that would cripple my entire future. At the end of sixth grade, the school’s guidance counselor refused to approve me to take college prep courses. It was suspected that her motivation was prejudiced because I was diagnosed with ADD. Eventually, she relented. However, hers was not the only damaging influence. My father deterred me from my earliest career interests at a time when neither of us knew how impactful it would be. I liked a particular interest inspired by my childhood. So I felt a strong motivation to try it. I was not intelligent enough. It was not a stable income. What about being a writer? That was not a stable income either. I lost confidence needed to pick what I wanted and compensated by doing what everyone else wanted. I was left to stumble my way through life. Stumble, I did.
In spite of all the years since my high school graduation, my development into adulthood never really changed from the way it started. I went from one friend and one job to another. I tried dating but rarely with any luck. I was prophetically criticized as coming on too strong and trying too hard by my closest friends. It only made sense to me to be direct and honest with my interest in settling down. I knew no other way to attract women than what made sense to me in my mind. That was because I was autistic. Between 2000 and 2013, I only managed to land four relationships and minimal sexual experience. The first three only combined for less than a single year’s worth of time. Dating was impossible. So I finally gave up and stopped trying in 2013.
Criticism I received since childhood instilled a fear of failure in me. Looking back, this likely prevented me from taking chances or making choices that would have otherwise afforded opportunities. My suppressed autistic nature did the rest. Indecision continued to interfere with my choosing employment. I went back to college and graduated in May 2010 with a bachelor’s degree (in history). This was something that guidance counselor once believed I was unlikely to accomplish. However, the decision to pursue it was flawed. My parents encouraged me to go back to college to get somewhere in life. But I was unable to choose what I wanted to do. So I continued doing what everyone else wanted. Afterwards, gaps between employments increased.
It was around this time that I began to sense a sort of peer pressure gradually taking hold. I noticed that my closest friends from high school were getting married and settling down to have kids. My other classmates were as well. They excelled at their choice of employment or, in one case, ongoing military service. Here I was, and going nowhere fast. For the first time, this social pressure instilled a fear of time in which I was falling too far behind. It would later be diagnosed as chronophobia. Each year, my stress increased. Close friends fell out of touch until the only people I knew were online. Eventually, I had no one left I could regularly connect with. I later found out that I was forced to be my own support person. Trust me. It is worse than it sounds.
Finally, in June 2016, after working my second-ever full-time job for just over one year, I was unexpectedly fired. The abrupt nature of it was disruptive. One minute I had a job, which I felt indecisive about anyway but needed to pay bills, and the next I did not. This single-handedly changed the course of my entire life. I could no longer ignore my lack of direction and economic progress. My stress spiked. If my path through life did not change, I was actually able to predict that I would soon fail from the stress. Suicide ideations increased as if my mind was shrieking at me to change. But I had no one I could relate to or help to solve whatever was wrong, including my parents. I still lived with them. So, in a desperate bid for answers, I stopped applying to jobs and sought guidance from the local mental health volunteer community. I was only 34 years old.
Sometime between 2010 and 2020, I had drifted so far apart from the people I once knew that I could no longer relate to their lives or feel comfortable being around them. Most friends of mine had moved away. I met with one local friend until he had his third child. I visited family less and only when my parents had planned to visit. Ongoing criticism of my driving led me to ride instead. I felt what is common for those who suffer from depression. I was surrounded by people, but no one really knew me. Everyone was too busy with their lives. I was too ashamed to want to be around anyone, even a close relative I only saw a few years at a time. Little did I know that my lack of integration was actually creating social isolation. It never occurred to me until the lockdowns of 2020 finally exposed just how bad my life really was and the reason why.
Imagine what happens when you find out the truth. I was writing my first-ever autism presentation during the summer of 2022. I had only realized I may have been autistic since birth just a few weeks earlier. I was diagnosed in 2019. The presentation compiled information about my progress through life for the very first time. When I finished reading the first draft, it was as if someone flipped a switch in my brain. I felt disassociated from my emotions for almost three full days. The reason why was a mystery until one year later. In June 2023, I was writing about this experience because I now suspected that post-traumatic stress might be involved. Suddenly, tears stung my face. The repressed trauma surfaced so abruptly it felt like an intrusive thought. I never integrated into society. I was 40. There was no hope of catching up. I was beside myself.
The more I learned about my life, the worse my outlook became. Without dating success or parents who were supportive of my mental health, I never developed a social life. Without a career path or consistent employment, I never established financial stability to have a life of my own. Without knowing that I was autistic, to adapt, my mental health began to deteriorate. Only three years after high school, in 2000, I attempted suicide. I have relapsed a total of four times in 2014, 2018, 2021, and in 2024. As a result, long-term exposure to suicidality has weakened my ability to withstand stressful situations. Even worse was acquiring long-term traumas, neither of which I may ever identify or fully recover from. Needless to say, I owe learning the majority of my knowledge about being autistic to the autism community itself. Otherwise, it was neglected.
I have seen concerning results with lacking integration. In one case, being misdiagnosed for years has devastated this late-diagnosed autistic woman’s life and health. After raising one child, she is struggling to establish financial stability for herself. We are close in age. In another case, although he is not diagnosed or aware, he achieved economic integration early in life. But he never integrated socially. Now, he has been increasingly depressed because he lacks someone to spend time with. He is close in age too and lacks coping skills to handle it. By far, the worst-case scenario is me. I failed to integrate at all. Life is so far out of reach now that I do not know what to do. At age 43, I struggle with finding the logic and motivation to live the rest of my life.
To expect older generations to know what was not known in their time is folly. Learning takes time and effort, and not everyone learns the same way or is equal to one another. Which is why where criticism can be applied is the effort with which someone is given a chance to thrive. Ignorance, privilege, age, prejudice, corporate policy, and more are no excuse. Change just one thing, and neither of us would be here. We are fortunate to be born into this world. We are not all of equal capabilities or the same as human beings. Yet our history is replete with one excuse after another being used to justify neglect that was neither compassionate nor necessary. We are human beings. Being autistic or ADHD should be no different lest the care you take for granted, like pain relievers or cystoscopes, not exist. We live and breathe. That is all that should matter.
I did not get to where I am today without the neglect of being autistic. Granted, I was not always the easiest person to deal with. All I wanted was a normal life. I worked hard. I tried my best to fit in and succeed. But I had no idea that communicating differently, taking longer to learn, or behaving differently were so looked down upon that my life would end up where it is. I never knew I would never be able to have a normal life on the basis of my effort alone. Now, I cannot rely on my parents, both for their age and lack of acceptance. I risk losing them if I share this. I will not qualify for financial assistance or housing because I am too functional. Autism is known to involve complications with development into adulthood. It feels like a prison sentence.
Take it from someone who knows. Lacking sufficient integration from being diagnosed late is an unforgiving situation. If you are lucky, you might have a few friends you can rely on. Unfortunately, you will feel anxious in public and around family. Few will be willing or able to handle you being in survival mode so often. You will be surrounded by those you wish knew the genuinely needful you. You will be expected to do it yourself. People will say, “We do and do and do for you.” You will watch yourself slowly being left behind. For example, if not for my parents letting me still live here, I may not still be alive. I am grateful, but the damage is done. We all need to do better. To quote a former co-volunteer, “Others have died from less.” This is why integration must be prioritized now, and for autistic adults. Our lives actually are at stake.
No one deserves to be left behind.
No one.
Arrested Development was originally published in Invisible Illness on Medium, where people are continuing the conversation by highlighting and responding to this story.