Amazing Creativity, True Originality, and Special Interests: Late-Identified Autism Interview
This is the 43rd interview in my series Interviewing Late-Identified Autistics. Jim is a late-identified autistic. My questions are in bold and Jim’s responses follow in regular typeface.
What name do you use and, if you want to share it, what pronouns do you use?
Jim R. Irion
How old were you when you learned you were autistic?
I was 37 years old. Two months after the official diagnosis, I turned 38.
How did you learn you are autistic?
I learned I was autistic in a most unexpected way. Thanks to my care provider’s case management service, I was able to afford and begin regular sessions with my first modern counselor in October 2018. This was through another provider. Early the following year, she had me try dialectical behavioral therapy (DBT) sessions for a couple months. All they did was confuse me. I could not understand how DBT would be helpful with what I felt I needed in my life. My main problem was indecisiveness when choosing employment. At one point, I got verbally frustrated with the DBT therapist, and I actually talked back to him in a moment of defiance.
Then, in May 2019, during our session, my counselor pondered my problem with DBT and had a hunch that changed my life. Her approximate words were, “No wonder why it isn’t working. I am going to have you assessed for autism.” I was assessed in June, followed by two months of counseling sessions to discuss the results and two psychiatrist appointments. In August, I was confirmed to be “on the anxiety part of the spectrum,” as it was told to me at the time.
How did you decide whether to self-identify or diagnose?
I didn’t. My diagnosis came as a complete surprise. Before my counselor in 2019, no one had ever thought I was autistic. This included the specialist care for attention deficit disorder (ADD) that I received from January 1990 (diagnosis) at age 8 to January 2008, when I left at age 26, because it was not helping. I had only heard of the term autism but knew nothing about it. So, if not for that non-autistic counselor, who was herself unfamiliar and inexperienced with autism, I would not have been able to begin getting my life on track. I owe her everything.
I had been seeking a full psychological evaluation as far back as December 2017. The Office of Vocational Rehabilitation, for my state, thankfully did fund one because I already had ADD on file. However, for some reason, the psychologist who did the evaluation only assessed me for a minimum of two conditions: generalized anxiety disorder with panic attacks as well as recurrent and severe major depressive disorder. Absolutely nothing else was considered. So, in hindsight, I would have had an opportunity right then if autism was prioritized for my age group. It was not.
How did you feel when you learned you were autistic?
To be honest, initially, autism was just one of the things I was diagnosed with. I had no idea it was so significant or what it was. I started asking people I knew to see if I could find out more information. In the first few weeks, a trusted community volunteer told me that there were virtually no resources for adults diagnosed with autism. I trusted their objective experience in the mental health field because I knew them personally. I was hoping to find something to aid in the social and employment decision-making problems that plagued my life. Instead, I felt utterly helpless and was confused about what this autism thing was.
Then, I came across formal autism research indicating only one-third of autistic people found companionship. This triggered over a year of depression. For so many years of my life, I had intently watched as all of my peers dated, got married, and had kids. It just never seemed to work out for me. Not for the lack of trying, but I tried less and less over time. Nothing anyone suggested helped me. Nothing I ever did made much of a difference either. By the time I came across that research, I had already given up on dating for four years. Now that I understand how difficult dating with autism is, I haven’t really had reason or hope to change my mind.
Had there been sufficient resources and autism research for my age group during this early diagnosis period, I could have had a much more positive outlook on my life. Keep in mind that this is the life and experience of an adult in their late 30s who, unknowingly, has been struggling with developmental setbacks all their life. These setbacks had taken a major toll on my mental health in the form of frequent anxiety and severe depression, as well as a total of four suicide experiences between 2003 and 2021. The most recent three were much more frequent (2014, 2018, and 2021). This is one of the more important reasons why diagnostics should be taken seriously. My article discusses autism and suicide risk more:
How do any of your identities (ex. gender, race, religion, sexuality, etc.) impact your late identification as autistic?
Despite being light-skinned and a capable enough-looking adult male in society, whom some view as privileged or worse, I received no preferential treatment or consideration before or after I was diagnosed as autistic. In fact, I was criticized for coming from a middle-class family by some people. My impression was that they viewed me as attention-seeking. The car I drove and the tax bracket in which my parents were thought to live were stinging evidence of classism. But there were worse experiences than these.
In one instance of unknowingly being unfiltered, I was treated like a threat of violence, thereby being publicly defamed. There was no consistent therapeutic attitude towards helping me get what I needed. Some people helped. Others regarded me as an outsider and treated me that way, even though I have lived here all my life. Much of the prejudice I either encountered or unwittingly caused made it take me longer to reach a pathway to care that could begin helping. I realized just how much my social problems stemmed from my otherwise normal demographics.
Although a few of the grievances have thankfully cooled over time, I must not lose sight of these kinds of issues when I advocate for autistic people. These are concerns many of us still face on a daily basis and are thus very relevant to continuously discuss. My reputation in at least two of the incidents is still unresolved, and I am left to face a lack of access to resources because of it. Let me point out that there are anti-discrimination laws that should be used right now for at least one of them.
What transpired was illegal, especially for such an influential facility. Yet, here I am. Powerless. I am glad it happened to me and not someone else. Discrimination has serious consequences, no matter what your demographics in society happen to be. None of it should happen to anyone. Neither should innocent autistic people, like Osaze Osagie, have to face the tragedy that they have. He should still be here.
How did your friends and family respond when you told them you are autistic?
There was really no discussion with family, who mostly would have been on Facebook or when we occasionally saw them during travel visits. The closest live several hours away. I also prefer direct social contact to discuss topics as delicate as mental health. There are times, such as in phone conversations, when I want to share something or talk about my life now. But there never seems to be an opportunity to discuss what often feels like an awkward topic. So autism and mental health remain unspoken barriers. The door is open, though. You are only born with so many family members, and I care a lot about all of mine.
Many of my former high school friends have families and lives of their own now too. Most have moved away. Therefore, I do not fit in anymore, even with them. They have their own priorities. Which is why, when I realized I was much less likely to find companionship because of autism, I fell into a deep depression. If I had been in a healthy relationship, it would have provided a constant social connection with someone I could have spent a lot of time with. But I am also autistic. I don’t have that because of my communication differences, which causes a lot of problems with dating.
My digital social support network has also been inconsistent in relying on any one person for very long. If I am being honest, I don’t really have a social support network. So, every single day, I try to keep myself as busy as possible to keep from overthinking about my depressing situation. But some people in my life have been supportive specifically because they know I am autistic, for which I am deeply grateful. This includes my parents as well, and it has become something very special. This support makes all the difference in my life now, and I am grateful to have it. I just wish more people knew and understood what autism is like.
Did you seek out therapy, coaching, or other forms of structured support for autism?
There was one autism non-profit organization that I tried contacting early on. Unfortunately, I was given the cold shoulder because of my adult age and was swiftly blocked. The contact originated on Facebook. My impression was that they believed only children were autistic or needed to be included, despite the evident fact that all kids get older. I assumed they knew this, but it didn’t make any difference. What a way to really make a diagnosed autistic human being feel welcome by being prejudiced against them because of their age.
Two months after my August 2019 diagnosis, my case manager found information about a local adult-age autism support group. I have since regularly attended, except between March 2020 and April 2022, when pandemic restrictions limited their ability to meet in person. This group has been very well facilitated and maintained. So, I make sure to advocate for all-age support groups because my experience has been particularly positive and helpful.
The non-autistic people involved have been exceptionally welcoming. This acceptance has allowed me to learn a modest amount about autism from comparative analysis. The autistic participants and I have shared and discussed our common experiences, and this has led to my discovery of traits such as stimming and sensory overload. Traits that I otherwise knew little to nothing about.
After all this time meeting with them, I care a lot about the group. I want to thank them for being welcoming instead of pushing me away as that non-profit did. Whatever the future holds, the participants will be my dearest inspiration for future advocacy. I just wish there was more than this resource in my area. As helpful as it has been, the support group is not enough in the long term.
How has learning you are autistic impacted your life?
In simple terms, my diagnosis and comprehension of autism have forever changed who I thought I was and who I know I am now. I went from realizing that I was, essentially, living a lie of a life to knowing myself more deeply than I ever thought possible. Autism originates in our neurology, which means our very basic self-awareness is also fundamentally affected. How we see the world is influenced just as much as how we interact with it.
My true existence, my now unmasked life, feels as if it has only begun after May 2022. Which, I should point out, was at age 40. That is a very long time, and it is far too late to be diagnosed (age 37). An earlier diagnosis would have been infinitely more beneficial. The impact is so complete that it defies simple description. Of course, given the length of this interview so far, who does not love so much rich life experience courtesy of an autistic info dump (no pun intended)? With this much important information, an info dump is practically a requirement for this next question.
Your Current Life
How have you modified or adapted your life since learning you’re autistic?
To be honest, I haven’t. I owe it to everyone to be honest about it here. Contrary to public and social media appearances of me blending in so well, I am still just getting by each day and trying to learn more about autism. I only really go out for some shopping and mental healthcare appointments. I have been unable to integrate into society despite being diagnosed for almost four years and understanding it for one. Despite being a talkative person and a writer. Much of my current life situation is, in every meaningful way, still in crisis. Please bear with me. This will take some courage and detail to explain.
I can work. I have held jobs in the past. Though I was fired from the last one for what I now know was undiagnosed autistic behavior. I have a 4-year degree from college. But I still live at home with my aging parents, who are running out of time to have me under their roof. I have not even moved out yet, despite being capable enough at 41 years old. It was not until just recently that I stumbled upon a logical explanation for why 23 years of my development have been disrupted so much. I have been masking a neurodivergent pull toward special interests since before I graduated high school.
As I explain further in this interview*, I have been plagued by an inability to decide what to do with my life for employment. Every decision about a job or a career path has been too inconsistent to get me anywhere. Despite holding down jobs that paid my bills, there was no emotional investment. Not to work at a call center. Not to go back to college for a bachelor’s degree. I felt nothing for every single decision that I have ever made. Only emptiness and devoid of purpose, apparently in a way that mattered.
Masking my indecision has and continues to wreak havoc on my mental health. All four of my suicide experiences can be traced back to this problem. It took a miracle to find out about a recently diagnosed autistic young woman to prove my case was not an isolated one. For the very first time in my entire life, my evidence sheds light on why I have and continue to hesitate about choosing a new job to pursue. I fear I will crack under the pressure of my own autism if I choose something I feel no pull toward. There are no accommodations that enable autistic adults to pursue special interests in careers. Allow me to demonstrate.
A basic job interview involves no meaningful feedback process if you are declined for the job. Therefore, you have no idea what you did wrong to improve, including if it was autistic miscommunication. A basic job ad involves meticulously scripted requirements to prevent someone without those exact qualifications from being considered. If you do not figure out a career path soon after high school, with each passing year, you are regarded as increasingly unfit, insufficient, or too old. Now I am 41, and I have been unemployed for almost seven years in a row. My chances are dismal to get anything more than a menial-wage job. Is that going to resolve the anchor inside me? No. This is why it is so difficult to be taken seriously.
At the end of the day, this is why I advocate so urgently. I don’t know what to do, and there isn’t much time left to decide before my living situation ends. Remember. I am 41. Not 21. I want to work. I can work. But doing what? Without resolving the indecision, my social life has diminished to practically nothing. Few friends are available for socializing who have adjusted to autism. I have no family of my own. No place of my own. And, worst of all, I have no retirement and probably insufficient input into social security. No safety net. Nothing except my parents’ roof over my head. I feel like I am caught between two worlds and running out of time.
My parents do a lot to help provide for me. So, I do as much as I can for them in return, such as cleaning bathrooms, mowing the lawn, and looking after them. They are my parents, after all. But they cannot suffice for much longer due to their advanced age. All of this paints a very real picture of me having to retreat from my own community instead of integrating into society. A society that is not structured to accommodate capable autistic people like me. Some agencies in the region offer services to help those with mental health issues integrate into society and offer living arrangements. Yet here I am, watching the irony pass me by.
Assisted living is insufficient for the wondrous things any one specific autistic person may want to do with their lives. But this is all that is available in my area. So, I have tried to make do with what little I have and understand as best I can. Until things change, my future will continue to look bleak, despite my being a capable adult. I feel a need to apologize for revealing so much negative information about me. The truth is better known in the open than masked and hidden.
In what ways does being autistic enhance your life?
I have to say the single most wondrous aspect of autistic life, hands down, has to be amazing creativity, true originality, and a passion for special interests like no other. Who makes a sandwich with white bread, pickles, peanut butter, and pineapple jelly and loves it so much they eat it for years? Who makes arts and crafts using a burning technique to scorch patterns into the woodwork like few things you have ever seen? I sometimes wonder if Vincent Van Gogh was autistic because of his painting style.
Who collects over 300 memes and nearly 100 of the most laughable animated gifs? Who watches genres of entertainment that span from Netflix’s awesome Castlevania series to the hilarious 1970s British comedy series Are You Being Served? I often have to stop and marvel when I switch genres with such a difference, just for a chuckle or two. I don’t watch regular cable TV because I can’t stand the time-wasting commercials. Take a look at some of the stuff I do watch.
Astronomy documentaries, Bob Ross painting episodes, video game playthroughs such as UGF Pandas Team Building Dynasty, Devil May Cry, and God Of War, modern and prehistoric history documentaries that span the full history of Planet Earth, Looney Tunes episodes that really bring back that classic slapstick cartoon fun, Seconds From Disaster episodes, 31 serial killer documentaries perfect for the month of October, tornado and hurricane documentaries that showcase breathtaking tragedy and survival, and a truly amazing array of too many movies to list in a single conversation.
When embraced, autism is a childlike exploration of life’s many wonders. We might go from being sensory overloaded to giggles in under an hour, but autism has much splendor to behold. Now imagine fully embracing informal mindfulness as a special interest. You will feel like Master Yoda from Star Wars. Connected by a force, an essence, of life all around you in ways that cannot be described in words by even this talented writer. Truly amazing experiences.
What are some of the challenges you face in being autistic?
In two of my recently published articles, for the first time, I reveal an incident of discrimination that took place in February 2020. It began as a harmless instance of oversharing and missing social cues but resulted in a branch of law enforcement being called. The incident represents some of the dangers autistic people, including those who have been diagnosed, face in society today.
“The Day the Cops Were Called, Part 1”
“The Day the Cops Were Called, Part 2”
At the time of this writing, I just experienced a completely unexpected and abrupt change that has set off an autistic meltdown. I am struggling to adjust at this exact moment. A puzzle game I had been playing for several years suddenly stopped supporting my iPod Touch 7G’s iOS operating system. Only now, without it, do I realize that I was depending on it to disperse the excess energy brought on by my ADHD. This leads me to conclude that a puzzle game is an excellent way for autistic people to de-stress. So I wanted to share details about this here. I am scrambling to adjust and find another game I can focus on…
So, I would also like to share my recent article, entitled “The Madness of Abrupt Changes,” because in it I discuss what can happen when our structured life is interrupted.
If you work, what do you do for work? How does your autistic identity impact your work?
Although I am not currently employed right now, I do have relevant information pertaining to autism and employment. So, if I may, I would like to provide it here.
The last full-time job I had was between April 2015 and June 2016. I now recognize that my termination was a direct result of my autistic behavior not being diagnosed. I have been unemployed since then, for almost seven long years. Though the biggest issue with my employment in general has impacted my life for up to 30 years. That is now three quarters of my entire life. This is what I was talking about a few questions further back*.
In my article, entitled “A Stunning Revelation of Special Interest,” I have discovered a link between neurodivergent special interests and the destructive impact masking those interests has on our mental health. A conflict can occur between needing to make a living and not being connected to our special interests when it comes to employment. For those like me who made it this far into adulthood, our socioeconomic development simply never happened. Even though I am a college graduate.
An untold number of autistic adults may not have made it at all if their mental health suffered too much. Thankfully, I found out about a young, late-diagnosed autistic woman in her 20s who developed symptoms of PTSD as a result of her specific indecision issue. Not only do many of us still require reasonable accommodations while employed, but some of us also clearly need accommodations to pursue our special occupational interests. The sooner, the better.
Personally, I would love to see Dr. Temple Grandin’s value of autistic innovation become a reality. I’m sure certain employers would too. But before too long. I am 41. Behind me is between 20 and 30 years’ worth of arrested development, including four suicide experiences. I still have the ambition of an 18-year-old, and I am ready to lead a new generation of autistic people forward in theirs. No matter at what age. We need this.
Is there anyone else in your family who is believed to be autistic?
Due to what I have learned about autism from needing to cope with my behavior, I strongly suspect there is more than one relative who is autistic. I say this with respect to the relative’s confidentiality, but with certainty, my observations and conclusions are correct. However, I am the first and only member of either side of my family who is medically diagnosed. This, as well as conversations with other autistic adults with diagnosed autistic children, leads me to strongly conclude that autism is either genetic and/or neurodevelopmental in origin. Nearly all autism statistics still count only children. If experts counted proven autistic adults as well, those numbers would be higher than a 300% increase.
What accessibility/support have you sought since learning you’re autistic? What support do you wish was easier to access?
Right now, my single most important support does not exist. Occupational accommodations to get autistic people, at least 18 and older, into their special career interests so they can thrive. I have published evidence (above) that proves some autistic people’s mental health suffers greatly if this does not happen. So, this is now a must-have, and I would prioritize 40-year-olds just as much as 20-year-olds. Mental health is a factor for all of us. I would also like to see mental health support strengthened to handle those like me who struggle because they are not connected to their neurodivergent career interests.
How have you self-advocated for your needs?
Well, I started the journey to address my mental health in late 2016. I had no idea what was affecting my life, and at first, there was no one to turn to for help. I did not have any mental health support yet. My life was going nowhere fast, which fueled an increasing fear of a relapse into suicide ideation. I started by writing about my life through blogging on the internet. I also did mental health-specific volunteer work as I searched for guidance. I was bothered by seeing people who I felt were not doing enough to help others. So, I sought to advocate for my needs and mental health in general to help more people than just me. Being a suicide attempt survivor provides a lot of self-motivation.
But I made some costly mistakes. I was forced to trust people I did not personally know so I could explain what I needed help with. This took place over the two years while I was active with volunteer work. As a result, I alienated numerous people because I had no idea my autistic communication was overwhelming anyone. I had heightened stress too. So, it didn’t take much. During late 2018, I was openly discriminated against by the chairpersons of a committee. I tried to have the matter redressed, but my pleas were ignored. By the end of that year, I stopped volunteering completely. I felt demoralized by my actions and devastated by theirs.
At the same time, my mental health treatment began. I was still driven by my life needs and reading about what other people were enduring. So I watched, learned, and waited while my life continued to go nowhere. In August 2019, I was diagnosed as autistic. However, because I did not understand my diagnosis, I became involved in four more incidents of discrimination as I continued trying to advocate for mental health. I discuss my treatment progress and advocacy efforts since then in the following two articles: “When a Diagnosis Is Not Enough” and “Knowledge Is Power.” This led me to an opportunity with my healthcare provider that I am currently advocating for today.
While I respect their right to professionalism and privacy, this is an insightful opportunity to discuss autism advocacy and accommodations. I will say that thus far I have been treated very well and do not wish my information here to reflect poorly on them.
It is very challenging right now for two reasons. Compared to some autistic people, I do not visibly look like I am in need of any accommodations. This increases the likelihood of not being taken seriously. No one has advocated for them about autism, either. I was recently referred to their employment team. That same evening, I realized I was about to miss a necessary opportunity to pitch for a discussion about accommodations. If I did nothing, I risked negating all I had discussed with them. The next day, I tried to re-establish a dialogue to have this addressed. So, my progress is currently pending as of this writing.
If I may, since I have real-world experience and, so far, some success, I would like to share helpful suggestions. Plan and/or practice discussing ahead of time what accommodations you feel you need. By practicing, you can build up confidence and reduce anxiety about sharing your information in person. This also gives you time to improve how you explain what you need. Make sure it is comprehensible and not too long. Having your information written or typed will also reduce anxiety because it will be easy to read when the time comes.
Don’t worry about eye contact. Dedicated and attentive mental health professionals can tell how important your needs are without constant eye contact from you. Try your best and tell your providers that you need more. If with a case manager or counselor, with my providers, I have up to an hour each that I can use to discuss my information without being rushed. This makes anything I discuss that much easier to share and explain with them. If you ever have too much difficulty explaining your needs, have your counselor and/or case manager help explain on your behalf with you present.
The best advice is to try. But do so in a way that does not alienate people, as I unfortunately have done in years past. Remember: for many of us, having no options for help does not make our situations impossible. It makes them necessary. For autistic people who can successfully advocate to their care providers, we can provide the feedback experts need to improve our care and generate the movement abroad for others like us.
How does your autistic identity impact your romantic relationships?
Being autistic has unfortunately been the death knell for dating because I persistently come across as too socially awkward. No matter how talkative I am or how much I appear to look like everyone else, I kept failing with dating. So, about a decade ago, I decided to stop. Here I am ten years later, knowing I am autistic and how difficult it can be for autistic people. I am at a loss for what to do. I was never a strapping physical specimen and never had a lot of money. I thought I had a charming personality, but after so long, that didn’t seem to matter either. I feel as if there is little hope.
Only now do I realize just how incompatible my social skills are with non-autistic dating habits. Have you ever seen that unwritten rule book for dating? Nope. I haven’t. And I never will. It’s called missing social cues, oversharing, and being unfiltered. I have also missed the ideal time of my life to settle down and have kids. Part of me has given up because it’s really too late to have a family of my own like many of my peers did. This is a never-ending source of sadness, which I regret to admit because of that age-old fear of saying something that will be unattractive to the opposite sex. Story of my life.
A part of me is also scarred by how many times women were dishonest, which is another issue with autism and dating. By being too direct, we naturally expect that in return. When it does not happen, I have spoken with other autistic people who agree very strongly about how these instances feel like a stinging betrayal. The one thing I want most in life is to find genuine and mutually loving companionship. The most depressing aspect of my life is watching this pass me by literally every day. So, I have been devoting myself to mental health awareness and autism acceptance. It feels like the only way I can give myself a sense of purpose to live for.
In a question further along, I share one of my recently published articles that goes into greater detail about dating. It explains some of the autism traits that have made dating much harder for me.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
For mental health care, stop referring to generalized care for autistic people over 21 as “autism care.” Stop implying it is effective for us as well. I have seen an increasing amount of evidence that suggests “non-autistic-derived treatment” is less effective for actual autistic needs. Second, include more of us in the feedback for the quality of our care that we need and make it a priority. If we are diagnosed as autistic, our feedback matters. I also have seen age is not taken seriously as well as minorities such as African Americans and Jewish people. Many women are still not taken seriously until well into adulthood. This has to stop with me.