Photo by Hush Naidoo Jade Photography on Unsplash

When a Diagnosis Is Not Enough

Jim Irion

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At the time of my diagnosis in 2019, I knew very little about autism. Word-of-mouth information indicated that it was very complex and would take time to understand. I did have a wealth of modern research information and experienced mental health professionals available to me. However, in February 2020, August 2021, and November 2021, I endured three incidents of discrimination. One destabilized my mental health and brought me close to a suicide attempt. Two of them destroyed my ability to access the resources I needed.

All three were instigated by my autistic behavior because I was unable to fully understand or cope with the complexity of the many traits. It took me nearly three years for my diagnosis to be of any substantial benefit. This means that until I understood autism, the diagnosis was not enough. Now, using my experience, I can explain why and reveal what needs to be done to improve autistic care for all age groups.

Through all of my youth and early adult life, my knowledge of autism was minimal. My childhood treatment was one of the reasons for this. In January 1990, at the age of eight, during second grade, I was diagnosed with attention deficit disorder (ADD). My parents enrolled me in the care of the specialist who administered the evaluation. Unfortunately, only ADD was seen as the source of my behavioral issues. I was shielded from awareness of anything else that could affect my mental health.

I left this practice in 2008, at age 26, because it was no longer helpful or cost-effective when healthcare premiums skyrocketed. I had the medication prescribed by the specialist transferred to my primary care physician because I still felt I needed it. My problems in life persisted. For all I knew, ADD was solely responsible, even though it did not make sense. Soon, I feared I might relapse into suicide. So, in 2016, I decided to address my mental health.

I was referred to a counselor, who suggested exploring the local volunteer community for guidance. As a direct result of this volunteer work, I had my first real exposure to the term “autism.” In 2017, I earned an opportunity to give a presentation for the local May is Mental Health Month conference. I missed a chance to attend a co-volunteer’s presentation on autism because of a scheduling conflict with mine. The planning committee got to interact with her autistic daughters during one of the meetings.

This afforded at least an outsider’s point of view, but I got no better understanding of autism. Nor did I suspect any relevance to me. The next year, I started having problems with prominent members of the volunteer community, which resulted in my exclusion from meetings and programs. Then, in October 2018, I started regular counseling sessions. Considering what I had during my youth, I referred to it as “modern.”

Following a hunch by my counselor, a proper assessment, and two months of follow-up sessions with her and my psychiatrist, I was diagnosed as autistic in August 2019. The ADD diagnosis was reaffirmed as attention deficit hyperactivity disorder inattentive (ADHD-I). My counselor and I continued discussing the problems in my life. I asked what this autism spectrum disorder was, but she was not experienced enough with it to offer better assistance.

A month later, my attentive case manager found out about a local adult-age support group. The more I attended, the more I started to understand some of the traits. The people there were very nice and welcoming. I could also identify with several of the attendees. End-of-year stress was hard for me, though. I scheduled fewer counseling sessions because they no longer felt effective. Autism remained little more than a mystery as it continued to shape the events of my life.

The first of which was at the end of February 2020. I would not know the significance of the incident for almost two years. Here I was, honestly vulnerable because my treatment seemed ineffective, when everything suddenly changed. COVID-19 lockdowns temporarily ended in-person services. For the first time, I remember feeling uncomfortable with the idea of telehealth counseling because it was not face-to-face. Three months later, I decided to switch to a new care provider.

The support group, in which I had begun to learn from the other attendees, ceased in-person meetings as well. Just as I was beginning to grasp autism, all progress abruptly stopped. The in-person service ban was lifted in July, but valuable time was lost. My next counselor was suggested to me because she previously had autistic clients. So, our top priority was searching for information to help me understand autism. However, I quickly discovered a serious problem.

Until this point, word-of-mouth information gave me the impression that autism was very complex. To be honest, it was rather intimidating. All I managed to learn about autism was one piece at a time. My new counselor and I searched for available information on the internet, but what we found only confused me. First, I noticed that each article was written by mental health professionals, whose credentials were shown. It was clear they had substantial education and were not necessarily incorrect with their autism data.

I also realized that neither source provided a uniform set of information. My counselor encouraged me to do research on my own since we only had one hour a week for our appointments. However, this did not help me at all. To put it simply, there was no consensus. Each source I found explained autism differently. I tried to move on with what little I understood. Then I had the first of several disturbing wake-up calls.

In February 2021, I resumed employment services with an agency. By now, I felt aware enough to emphasize being autistic. They assured me they could accommodate autistic clients, “including those with college degrees.” After three months, I was unexpectedly assigned to a new job coach. Although this was disruptive, the next one refused to work with me at all and forced a stressful reassignment to a third one. When I started with her, five months had passed. I was still unable to decide what job to apply for.

They suggested a program that they believed would be helpful. So, I tried it. On the first Monday of August, all of my program appointments with them were cancelled. No reason was given except for a secretive meeting scheduled at the end of the month. While I waited, this disruption of my life was agonizing. I had two people attend on my behalf because of the distress. Nothing could have prepared me for the meeting.

The agency blindsided me with accusations of misconduct and threatened to expel me from the second program. The case worker had been much too casual in her socializing, which lulled me into a false sense of security. I suspected that I either never saw the social cues or was set up to take a fall for my lack of employment progress. Despite who I had present for me, no defense of my position was given for reasons that are confidential. Three weeks of paranoia and anxiety suddenly erupted.

After the meeting, when I got in my car, my composure completely collapsed. In what I can only describe as panic, I drove to a local landmark and contemplated suicide in an act of furtherance. Fortunately, I was able to cope on my own. It was a terrifying experience. I tried having the matter redressed. It resulted in a stalemate that gave the agency no legal obligation to resume services as they were before August. Worse was yet to come.

I had not heard from the facility where I sought referral assistance in February 2020. My goal was to explore research and publishing opportunities in their parent branch of operations. So, in November 2021, I chose to go back in person to ask for an update. Much to my dismay, I was denied entry despite having volunteered there in the past. I discovered that the damage to my reputation was staggering. I went to their senior management for what should have been a swift resolution.

They declined to get involved. I could not believe such a blatant attempt at discrimination would be tolerated. Fearing all was lost, in March 2022, I filed a complaint with an Affirmative Action office. They refused to consider my evidence, declined my diagnostic paperwork, and lied on the report. I lost the appeal. All of it started when I overshared about being a suicide attempt survivor and missed social cues. The decision was rendered in May.

It had been nearly three years since my autism diagnosis. My social problems were getting worse. My career indecision was unresolved. I was drifting further away from society. At age 40, with my mental health evaluated, I could not get my life on track. After the appeal decision, I reached out to my local NAMI affiliate’s executive director. At the time, I was an active member. For the last year, she was someone I could look to for guidance. Her suggestion to check the discussion groups on NAMI’s website was a key moment.

I found a debate that finally made me ask the right questions about autism. Where does it originate? How much of my behavior does it truly affect? Is it biological, mental health, or both? The local Center for Independent Living’s assistant director shared a link to an overview of autism by the National Institute of Mental Health. In that moment, everything changed. Autism started to make sense.

I noticed how the word “neurological” was prominently referenced in the sentence of the NIMH definition. So, I asked myself, “How does neurology affect me?” To demonstrate autistic thinking, since this is still fresh in my memory, here is exactly what my reasoning was. Using simple biology, my heart is essential to pump blood for my body to function, followed by my lungs to oxygenate my vital organs, and my brain to control everything. What happens next?

If my brain controls my neurology, this is before I act or react. Autism had to be more than a set of traits, such as oversharing and missing social cues. It could be influencing all of my behavior, including my thinking, which is crucial to how I function as an individual. I felt it was very serious for me not to have known sooner. Even though I was not a biologist or psychologist, the deductive reasoning was sound. Then, the matter of my safety and well-being came to mind.

In February 2020, I adamantly discussed advocating for mental health and self-identified as a suicide attempt survivor. The cops were called. During the summer of 2021, I was lulled into a false pretense of casual behavior with the caseworker. They accused me of misconduct. Not only had it been two weeks since I lost the affirmative action appeal, but it had only been nine months since the discrimination incident at that agency.

Three major instances in which my autistic behavior triggered people and resulted in retaliation against me. These incidents voided my access to services. Both may have permanently ruined my reputation as well, not to mention jeopardizing how autistic people might be treated by them in the future. I could not afford to ignore these revelations, nor, I realized, could anyone else who is autistic. My diagnosis was not enough. So, with the knowledge I had gained, I set out to do something about autism in society.

(see Part II, entitled “Knowledge Is Power”)

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Jim Irion

I am an autistic advocate, writer and presenter. My writing is primary source research material. "A leader leads. They don't walk away when someone needs help."