What we do for autistic people today will determine the fate of future generations. What we do not do may condemn them.
Photo by Benjamin Davies on Unsplash
I wish I knew then what I know now. I might have been able to prepare myself more. In 2022, I had no idea just how much my life could possibly change. I found out that I was autistic in 2019 when I was 37. My life was in disarray, but nothing compared to what I know now. The healthcare providers I had refused to accommodate a diagnosis that they were responsible for. I had to find out everything I now take for granted on my own.
At the time, I joined Twitter in the hopes that I could learn from the people who were actually autistic. I am glad that I did. If I had not sought them out, I would have been lost and confused by all the prejudice and ableism that is synonymous with autism. Many believe we fake being autistic for popularity or to avoid work. Elected politicians think vaccines create us. These last three years are when I learned the most. If we do not create supports for autistic adults soon, future generations will have nothing either.
It began with realizing that autism influenced my communication, learning, and behavior. Until May 2022, all that autism appeared to be was a scattered list of personality traits. I had to learn what it means to be autistic, a complicated yet fascinating neurological difference, all from scratch. But not without clues.
For years, I knew there was something different about me. I was plagued by persistent social problems. Not thinking before I spoke. Dominating conversations. Coming on too strong and trying too hard with dating. Feeling overwhelmed by abrupt changes. Confusing people when I explained my thinking. Alienating others with my awkward behavior. Scaring people away when I shared too much information. Then, missing social cues and being blindsided by accusations. So I literally thirsted for the truth. As an advocate, though, if I failed, I would fail countless people who had no one to turn to. They were isolated and alone. Like me.
I was also plagued by peer pressure that never actually stopped after high school. Former classmates of mine were fast working towards retirement. Their children were almost grown up. Seeing the progression of their lives on social media filled me with fear. If I did not understand what autism was and straighten out my life soon, it would be too late.
But I already was too late. I just did not know it yet. Echoes of tough love motivated me every step of the way. Stop being so negative. Stop obsessing over your past. Be happy with what you have. Taking Ritalin is no excuse for your behavior. You’re an adult now. Do it yourself. Why have you not had children yet? What are you waiting for? Lazy is not having a job. Save for a retirement. Pay into social security. What is wrong with you? Just be happy. Nobody cared to recognize that I was actually different. No wonder I was in survival mode. This pressure was as relentless as it was ruthless.
From the beginning, I got the impression that autism was too complicated to understand. This led to neglect. If being autistic influenced my communication, learning, and behavior, then it must also influence my thinking. Here is how I came to my conclusion using only high school biology. First, my heart is my primary organ. It circulates blood throughout my body. Next, my lungs filter oxygen into my blood. Third, needing oxygenated blood, my brain controls my body to function.
Next, the synapses in my brain sparked to generate my ability to think. I could not separate my thinking from how I functioned. You need to have conscious thought before doing any of those things. Our ability to interact with our environment also first develops in the womb. Therefore, I was always autistic. Any clues or traits have to be taken seriously. Being complex was no longer a barrier to address it. I could now understand what it truly means to be autistic.
This was June 2022. What was supposed to happen next? Rediscovering who you are as a human being does not come with instructions. It was still early. But I already felt I could not rely on certain people to take autism seriously. My parents never tried to understand who I was in spite of my behavior. I had no one else. I was also 40 years old and had no time to waste.
So I used my best judgment and kept an open mind. I was careful to consider everything I observed with autistic people. First, I looked for similarities, which helped me to understand what autism actually was. I took key differences seriously. Women presented their characteristics differently than I would as a guy. Minorities suffered through more adversity due to their skin color. At the same time, something incredible was happening. I was not alone anymore. For the first time in my life, I finally felt like I fit in. In my heart, I started to embrace them. “These are my people.”
Over the next 12 months, I gradually began to notice that I was not focusing on a group who were already believed to need the most attention. Non-autistic mental health professionals, who proclaimed themselves to be experts on being autistic without our input, believed that only the youngest and most impaired were autistic. Contrary to these experts, I soon found that those between the ages of 18 and 21 either had their assistance reduced or cancelled.
This contradicted the glaring fact that autism was being diagnosed as a disability. Someone was expecting them to outgrow being autistic as they got older. Who would be so prejudiced? I noticed this while I did informal research for a presentation opportunity that I attained in June. Having already become aware that I was autistic since birth, I was appalled by this. Exactly how many autistic kids were being intentionally neglected? How many were having their transition into adulthood disrupted?
As much out of compassion as principle, kids were very important to me. For example, I already knew that they were more vulnerable to suicide. I lost a classmate in ninth grade. In his last class, I sat just out of arm’s reach from him. I know coping skills need to be learned before teens can handle heightened stress. While I was observing autistic adults on Twitter, I kept track of a Facebook group for parents of autistic kids. Parents were reaching out for help. Many were sharing some heartbreaking support needs. Kids! Why were they not being given better support by mental health professionals or their respective US States? According to experts, the youngest and most impaired were autistic and thereby needed the most attention and funding. But as the year came to a close, my focus began to shift. I was presenting what I observed about a lack of support after the age of 21. It occurred to me several times: which age group should I focus on?
At the start of 2023, I had a new counselor who was encouraging me to trust my instincts. This had a profound effect on everything I was observing. By April, I started to recognize that, as an autistic adult, I was likely going to need some sort of accommodations. At 41, I was never able to move out to have a life of my own. I was unemployed since 2016. To find out why my stress was so high, I stopped applying for work and sought answers in a journey that led me here.
With my counselor’s help, we arranged for me to meet with their regional director of operations. She helped me give my presentation on autism twice. However, as my counselor witnessed, the meeting was one-sided. The director knew I wanted to discuss accommodations. She dominated the conversation and ended the meeting after 15 minutes, saying that, “This is how employment works.” The decision of what age to focus on soon became clear after I made a brutal discovery.
My mental healthcare provider was accommodating a younger autistic client through case management. The previous year, she had post-traumatic stress identified along with a late autism diagnosis. She wanted to be a harpist. Her stress was triggered when she had to pick a job other than her strong interest in music. I had a similar experience after I graduated from college at the same age, except that I was unable to choose a career path. The more I thought about her case, the more I felt déjà vu. It turned out to be a dire warning. I was remembering the denial I felt as a survivor. Unlike her, I had no help and attempted suicide. Fortunately, I survived. But I must have been in denial of my late autism diagnosis, which meant that it must have been serious, too. I had to be sure. When I reflected on my past hoping to confirm it, I triggered repressed trauma that ripped my mind to shreds. One second, I was fine. The next, I was crying in absolute panic.
Remember the peer pressure? Stop being so negative. Big mistake. Everyone around me insisted that I only see my life with a positive attitude. This kept me from taking my autism diagnosis as seriously as it needed to be. The experience was so overwhelming I could actually compare it to my suicide attempt. I may have lost my grip on reality had I not found a 5-minute video one month later.
Kieran Rose, an autistic researcher, expertly summarized a theory called the double empathy problem by Dr. Damian Milton. This theory explained why I had so many social and economic problems. It was also unbiased. The double empathy gap occurs when two individuals who communicate differently misunderstand one another. It affects us more because being autistic is believed to be faked for popularity or a defect caused by vaccines. I told myself, “Do not give up. I finally have answers.” I was thoroughly convinced adults were the priority.
Then, I attended a meeting in which a leading member of a local non-profit gave a speech commemorating the Americans with Disabilities Act. In his words, he said, “the fight for intellectual disability rights is not over.” He was right. Autistic people, especially adults like me who were neglected long into adulthood, now needed new accommodations just like wheelchair accessibility needs were once new and necessary.
Why was our unemployment rate the highest of any disability group in the US? Why were an untold number of suicides occurring? I never reported mine. I am also autistic. This proves suicide rates are actually under-reported, and for autistic people as well. I felt I had no choice. So, in October, I requested four accommodations. One was based on what my provider did for that younger autistic client. But a representative for the non-profit said I had no right to request it. They refused to help, and it cost me everything.
Four months later, my efforts failed in spectacular fashion. In an act of discrimination, I was forcibly discharged. I lost all my mental health care in one day. My provider betrayed my trust so deeply that I was traumatized to be around counselors, psychiatrists, and administrators. More than ever, I was convinced that autistic adults were the highest priority. How could I see it differently? I was living a waking nightmare.
For the next two months, I had suicide ideations nearly every other day. It was hell. The fight for intellectual disability rights was all a lie. The non-profit receives its grant funding from — none other than — the state government itself. This is why they refused to act. Then, someone supportive of the autism community offered assistance. But they turned out to be a monster in disguise. During last summer, they bullied me until I had a migraine with aura from the stress. At the height of this turmoil, my perspective shifted again.
In early August 2024, I published the culmination of my efforts to write a letter to autistic kids. School students, to be exact. I appealed to them through knowing what public school was like without knowing I was autistic. I integrated portions of my NAMI “In Our Own Voice” presentation content into a formal article. I had been a program leader with them but decided to move on to prioritize autistic people.
So I preserved the content I wrote for students. After I finished writing it, though, I realized something I had never thought of before. Since I did not become fully aware until age 40, I never actually saw what it was like to be autistic through the eyes of a child. I wrote about life experiences that took place while I was growing up. But those are two very different perspectives to see the world. Little by little, I began to wonder what life was like today for autistic kids, not just from an adult’s point of view.
I was beginning to come full circle. Earlier that summer, I wrote an article that explained how I was using my bachelor’s degree in history to study my autistic life. With each piece that I wrote, my awareness deepened. In September, I rewrote my 2020 suicide survival story. It starts two years after high school with my first graduation from college.
In December, I reviewed my “Monotropism Employment Theory.” It is based on what happened to that young autistic client after she graduated college. But it was the desperation of my living situation at the start of 2025 that helped me see the big picture. Adults today are not the only ones who need support, such as with employment. At 43, I am facing a grim reality. I have zero economic development. I have been unemployed since 2016 to figure out why I had trouble picking employment. Whether my parents’ health fails or not, I will soon be homeless. What happens when autistic kids grow up?
Then, it hit me. If not now, when? The more desperate my situation became, the more I started to realize how autistic kids and young adults will be affected when they are my age. The more I started to care about what happens to them. I once knew two autistic kids in their early 20s. They were unemployed and living with their mother, whose health was poor after repeated cancer treatments.
If something happens to her, they will have no one to take care of them or a place to live. They originally had their assistance reset when they graduated high school. Why? It is because ages 18 and 21 are societal norms for when society expects us to fend for ourselves. Except that people like me who were actually autistic never got the help we would have needed. Many of us were stereotyped as high-functioning and misdiagnosed. We weren’t just neglected. We were condemned to a life of suffering. I have the most ideal demographics and I still failed.
In February, for the very first time, I was finally able to articulate my longstanding lack of integration and the impact that neglect has had on my life. I put forth my very best effort, and it was still not enough. Not knowing I was autistic or had accommodation needs led me to where I am today. The National Institute of Mental Health defines autism as being developmental for a reason. Because it is.
Qualified mental health experts ignored social problems that I had as early as junior high school. The specialist that I saw for my attention deficit disorder (ADHD) ignored how my behavior never changed in spite of his efforts. My parents never accepted my behavior as being anything other than a lack of discipline. No one took my lack of development seriously until it was too late. Now I will not qualify for either Social Security (SSI) or housing. My state considers me to be “too functional.” If autism was honestly a myth, would you be reading this? No. Why not? I would be living a normal life, not watching it flash before my eyes every night.
Before this all started, I had no idea what autism was. I did not want to be different from anyone else. I never wanted to need any help. If I was actually lazy, would I have missed only a handful of work days across every job I ever had? No. For years, I put forth the very best effort I possibly could to succeed at life. Now, in what feels like the blink of an eye, life will never be the same. The experts were wrong.
Now I know what the most important question is: how do we support late-diagnosed autistic adults, like me, so that we can integrate into society after age 30? Due to our neurological differences, we struggle with social skills and employment but are still capable people. We are human beings who should not be left behind. We are single parents, mothers, fathers, brothers, sisters, and best friends. Many of us are lucky to still be alive. By the time I found the truth, I realized that future generations will have no support when they grow up.
Someone once told me that I am not an expert on autism and cannot be because I am not a mental health professional. Good science is good observation. Everything I have observed has been scrutinized through the same time-honored traditions of critical thinking and objectivity that mental health experts’ legitimacy is based on. My advocacy has been built upon being a primary source with firsthand, lived experience.
In formal research terms, this is the best source experts can ever use. I have traced credible proof I was autistic further back than kindergarten. I tried to earn a living like everyone else until the lack of support was too much for me to handle. I started with no loyalty to autistic people. I just wanted a normal life before it was too late. Now I take autism seriously for the sake of my own survival. Many of us still do not know if we are autistic yet. If supports for autistic adults are not prioritized now, we will condemn our children’s future.
Whether or not we are diagnosed, autistic people are human beings. Ask us what life is like. I will tell you the truth and not waste time because, at age 43, I don’t get to have a normal life. Yet when debates about autism and vaccines are trending, I watch as people talk over us as if we do not exist. All while people take pain relievers and medical scans for granted. If being autistic was always faked for popularity or to be lazy and not work, would I have been driven to suicide?
Suicide is not what anyone would ever willingly want to experience. Trust me. I know. I am a survivor. While women and minorities constantly face adversity because their differences are visible, no one can see ours. I have observed legitimately autistic people across every major demographic. I know because these are my people. I have to take being autistic seriously — for survival. Look to those you hold most dear. Autism is all around you. Time is of the essence.
I would like to dedicate this to autistic people everywhere.
Everyone deserves to have a happy and fulfilling life. Everyone.
Autism Is of the Essence was originally published in Invisible Illness on Medium, where people are continuing the conversation by highlighting and responding to this story.