In May 2022, I realized my autism diagnosis was not enough. In five years, I went from having only heard about the term “autism” to being diagnosed at age 37 and abruptly realizing it affected my thinking. Not only this, but previous incidents of discrimination blocked my rightful access to services and ruined my reputation. Worse has happened to other autistic people, such as Osaze Osagie, who was killed in 2019. My diagnosis only confirmed my autism.
Publicly available research was too inconsistent, with respect; there was not enough consensus among mental health professionals or enough resources. These setbacks kept me from coping with the traits as quickly as I needed. So, I decided to take action. It soon became clear I had stumbled onto something far bigger than my late-diagnosed authentic self. Using what I learned, I have started a call to action to address autism needs by first focusing on the mental health profession.
June 16, 2022, is a day I will not soon forget. I attended the local Center for Independent Living’s autism support group meeting. Two months earlier, they resumed in-person services. It had been a long two years since such attendance was permitted. Seeing the group participants again was a welcome relief. I grew close to them because of our shared autism experiences. I was also thankful because I felt more at ease in person than virtually. However, few of them attended that day.
This gave me an unexpected opportunity to discuss what I recently learned about autism and neurology. One of the support group’s co-facilitators happened to be the chairperson of the local Task Force for Education for Bedford, Blair, Cambria, and Somerset. She offered me a presentation opportunity because I was very articulate. My task was to write about the lack of autism services for adults over 21. So, I set to work doing informal research.
I already knew that my natural talent for pattern recognition was a common autistic skill, and I was good at it. This would play an important role in the research. I had already absorbed a lot of data about autism over the past three years. In order to ensure that there were not actually enough resources for autistic people who were late-diagnosed or over the age of 21, I started examining relevant Facebook groups and communicating with autistic people on Twitter.
What I did not anticipate was how I would draw logical conclusions from these observations of online communication, in-person interactions, personal life experiences, and the research data all at the same time. The more I interacted with autistic people and parents of autistic children on social media, the more two distinct patterns emerged. There were repeated references to “aging out of the system” or being “over the age of 21.” This matched with what I had seen in my own life.
After several weeks of research, I concluded there were too many independent sources for the information to be trendy or isolated. I was not the only one who was late-diagnosed, over the age of 21, or had few if any autism resources. I was not the only one who had problems with being taken advantage of or discrimination issues because autism was not accepted; there were persistent social conflicts, suspected side effects of masking, difficulty with employment, and more.
When I finished my presentation’s first draft, all of my observations were in one place. Now, I could see the big picture. All these years, I hoped my behavioral issues would have some resource available for whatever was affecting my life. I was lucky to have a local support group. Keep in mind that I was not raised to have a sense of entitlement in life. My legitimate, informal research indicated there were not enough effective resources or acceptance for autistic people.
I was shocked. My information did not come from gossip or speculation. These were real people with real issues. My heart sank when I thought of Osaze Osagie. In March 2019, he was shot and killed by police because they were not prepared for non-verbal autism behavior. Then I realized his skin color may have actually been a factor in the shooting. You cannot see autism in our appearance. Until my former counselor had a hunch based on my behavior, no one knew I was autistic.
Remember back in February 2020, when I went to that facility for referral assistance and mentioned being a suicide attempt survivor? The one that I was denied entry to in November 2021? The secretary photocopied my driver’s license and later called the cops. What would have happened if she lied and said I had “aggressive tendencies”? My jaw hit the floor when I realized I was already diagnosed as autistic. Yet I was clueless. This was unacceptable!
So, I tried pitching my presentation to the facility director where I received my mental health care. Thankfully, I succeeded and secured a presentation opportunity for September 2022. I owed the director a great debt of gratitude for the chance to discuss these time-sensitive and serious issues the entire autism community is facing. Thanks to my pattern recognition, I found as much diversity as is seen in whole countries.
I had conversed with autistic people who live all across the world, from different economic standings, racial demographics, gender identities, a plethora of cultural backgrounds, and religious denominations. Autistic people may in fact be more numerous than research suggests. Before the presentation, I used my data and experience to think of practical ideas that might improve care. I felt this would capitalize on the opportunity of presenting to an experienced mental health administrator. My forward thinking paid off.
After the presentation, I was asked for suggestions I thought would be helpful. The first involved current clients. If any were suspected of being autistic, they should be taken seriously and evaluated right away. Next, new clients should be assessed promptly as well, particularly minorities and women, who I had seen were either underrepresented or not taken seriously for being autistic. This would reduce the chances of anyone over the age of 21 going undiagnosed while in their care and maintain a higher standard of awareness.
The third suggestion I made came from the hearts of my autistic friends at the local Center for Independent Living: a compassionate and welcoming support group. Attending it has changed my life, and not just because of the autistic people. The non-autistic group facilitators have made very important contributions too. Afterwards, honestly, I turned my attention to the rest of the world. Why?
In the last three years, meaningful contact with so many people who are autistic has not just given me a sense of identity and community. They have expressed a legitimate need for urgency. We have time-sensitive concerns requiring attention as soon as reasonably possible. Any further delays could be costly. To strategize for ideas on what I could do to help with such a vast undertaking, I reflected on my past experience as a community volunteer and advocate.
I have had mental health writings published, but with limited effect. Social media algorithms have made it difficult to reach a lot of people. There are already a number of influential nonprofit organizations. Yet, our problems persist. Using my autistic, out-of-the-box thinking, I believe I can suggest an efficient course of action. By focusing on the source of where our health care comes from — the mental health profession — I can effect change because we are primary sources.
A primary source is a person with firsthand lived experience. In formal research terms, this means that, as an autistic person, my experience is what mental health professionals should use when determining our care. I can describe what autism is like to live with. As a primary source, I have made several key observations. First, and most importantly, in 2019, I was left to figure out autism spectrum disorder, a complex neurological and developmental disorder, on my own.
My modern mental health care either did not help or could not help. It was not their fault. They lacked accurate research data, for example, to make brochures available to clients. I was at a disadvantage because autism data was not prioritized. This allowed developmental setbacks to persist, increased chances for discrimination, and strained my mental health. If anyone else has this problem, in spite of age, parental support, or care provider, the diagnosis will not be enough.
Second, publicly available research data accessible via the internet was inconclusive. With respect to the publishing mental health professionals, there was no comprehensive or consistent explanation of autism to know how much of my behavior was affected. Most of the publications that I found described a partial set of traits compared to what I know now. In spite of the consistency I did find, I was still confused. It was like being given multiple directions to the same place, but I could not know who to believe.
I had to figure out autism myself, which took three long years and left me exposed to serious problems. The NIMH overview was crucial for me to understand autism because the neurology detail made me see the big picture. Without it, I would have been forced to cope with autism one trait at a time, not the entire condition, until either my health faltered or I risked suffering a relapse into suicide, which did happen in 2021.
Third, I was diagnosed well into adulthood at age 37. This exposed me to developmental and social problems as early as elementary school that disrupted my entire life. My birth year did prevent an earlier diagnosis. And yet, the specialist I saw during my youth only believed I had attention deficit disorder. This shielded me from suspecting anything else. After the age of 21, mental health professionals did not prioritize the possibility of autism in age groups such as mine on a large scale. The emphasis is still placed on ages under 21.
My late diagnosis was also the result of a counselor’s hunch. A hunch. If not for her general counseling experience and instinct, I would not have been diagnosed at all. I owe her a great debt of gratitude for taking my mental health seriously. Without a medical or self-diagnosis, the reclamation of my life would never have happened, nor would it have happened soon enough to improve the quality of my life.
Finally, not all mental health professionals take autism seriously in their research or care. In my contact with parents and younger autistic adults, I have observed that some psychiatrists and counselors agree that autism is complex; some believe that it is not outgrown after age 21. However, I have seen evidence that indicates others do not agree and persist in holding such a contrary view. As a result of this division, I have seen not only the rise of self-diagnosis but also at least a temporary need for it.
Autism is either not sufficiently understood yet by the mental health profession, in which case I extend an invitation for us to help; there is no agreement on autism research; or a combination of both. The longer this lack of consensus persists, the more we suffer. I took great care to say this because I genuinely respect the education and work hours that mental health professionals commit to their profession. Autism is real, and so are our needs.
I believe that true autism acceptance must first come from within the mental health profession because education is the key to reducing stigma. If autism is not fully understood yet by psychology and psychiatry, I am one of the intuitive primary sources who can help bridge the gap. With our help, once there is a uniform consensus on understanding autism, the publicly available research will accurately reflect who we are to anyone who reads and uses it. This will help reduce stigma in society because the accurate information will dispel misconceptions about us.
Once autism is taken seriously by all in the mental health profession, fewer diagnoses will be missed regardless of age, minority status, or location. This will greatly improve the quality of our mental health care. I confidently believe these goals can be achieved in just one lifetime. If we want to gain acceptance in society, we must first address the lack of acceptance from within.
(see Part I, entitled “When a Diagnosis Is Not Enough”)
