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Amazing Creativity, True Originality, and Special Interests: Late-Identified Autism Interview
- Jackie Schuld
- May 9, 2023
- 30 min read
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.
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.
Third, employ the more intuitive of us in the mental health field to develop autism resources that would more efficiently benefit autistic people. We may not have the specific degree for the specifically written job ad. But there are a number of us who are drawing on a rock-solid foundation of firsthand life experience as primary sources. The longer these changes take to be made, the lower our quality of life will continue to be.
Your Past
How did being an undiagnosed autistic child impact your childhood?
In my recent articles “I Overthink; Therefore I Am” and “Double Espresso Without a Filter,” I share how two instances in 4th grade left indelible marks on my undiagnosed autistic youth. I remember such clarity from so long ago because of my autistic talent for memory retention. However, much of my public school experience is lost. I had been bullied so much during high school that in the first few years after I graduated, in 2000, I purged them in order to cope. I owe the group of friends I continued to socialize with for being a rock of support I could depend on. Although we have since drifted apart, most of them having families of their own as opposed to me being by myself, I owe them for their camaraderie and respect back then.
What ways did you camouflage or mask?
In my longer article, entitled “Part of My Journey is the Journey,” I chronicled how I have masked my career decisions over the course of 30 years of my life. But masking is otherwise too difficult for me to discern when I am or am not doing it. So, this is the limit of what I can explain.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
I strongly suspect that autism significantly impacted my youth. I was easier to tease because I was socially awkward. I also fought back almost every time. So, I probably caused at least half of the bullying I endured for this alone. Early attempts at dating were dismal because I came on too strong and tried too hard. In hindsight, that is because I was too direct and approached dating logically instead of (the confusing laws of) attraction. Without these issues, I would have had a more successful social life than I ended up with.
I can’t change the fact that my birth year played a role in my late diagnosis of autism. I was born in 1981. The specialist care I had from 1990 to 2008 only saw ADD as the cause of my issues. This prevented me from knowing I had anything else and thus became a serious flaw in my care. To my knowledge, the specialist is still in practice today with the same directive. I was fortunate to make a self-reliant decision to leave their practice in 2008, as well, for more cost-effective options.
I know in my heart how much better my life would have turned out if I had just known sooner that I was autistic and how it influenced me. For one, I might have been able to establish a relationship that could have led to long-term companionship. I could have had a family of my own. That hurts no matter when or how I think about it. This is a time in my life I can’t get back or do differently.
If nothing else, this is what society should remember most about late diagnoses of autism. Important parts of our youth are gone. Forever. You can’t replace that. We need to do better for the sake of future generations.
How did being an undiagnosed autistic impact romantic relationships?
In my recent article, “The Most Unfortunate Trait to Date,” I share how autism has impacted my dating experiences during my youth and into adulthood. It is a candid, lighthearted, yet revealing look into one of the most depressing issues in my life.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
In my article, entitled “Welcome to the Autism Experience,” I provide a brief glimpse into the mind of an autistic person. There is over 30 days’ worth of valuable insight that I wrote for April 2023 to promote autism comprehension and awareness. As simple as autism can be with our thinking, it is infinitely more complex with our neurodivergent behavior. So, I provide both basic and in-depth experiences to benefit all potential readers.
I would also like to quote from my recent article, “A Beautiful Mind.” Here I provide an excellent example of autistic thinking and how it influences our daily lives.
“To visualize this in a real-world example, let us make a sandwich. Normally, you would make a peanut butter and jelly sandwich. Or, you might make toasted pumpernickel bread with cream cheese. Both are typical recipes. Since I am neurodivergent, my thinking would reflect a greater chance for different choices. I would combine peanut butter, cream cheese, and ketchup on pumpernickel bread. Does this sound repulsive? Unique? In fact, this is actually a true story.
When I was in first grade, I made this sandwich for a couple of years. Most people thought it was disgusting. They still do. Thankfully, one of the teachers was more encouraging. “As long as you like it and eat it,” she said. This gives you an idea of how we are viewed by the rest of society. Remember. I am being honest because it makes sense to be accepted for who I am. If food recipes were a sensitive subject, this would qualify as oversharing and being unfiltered.”
What do you wish others knew about autism?
We try not to be too intimidating by coming across so strongly. We are not intentionally being too direct to make people feel uncomfortable. Personally, I wish I could read social cues a lot more often than I typically can. My attempts at dating would probably have been more successful. No one would call the cops because I info-dump safe and inspiring information about surviving a suicide attempt.
Being autistic means that we have inherent communication differences and are often completely unaware of them. Especially when engrossed in a conversation. But the discomfort you may feel does not and should not make us mean or aggressive based on interpretations that exclude the proven facts of our neurological differences.
I am honest and assertive. For the longest time of my life, I had no idea I was making people so uncomfortable. I had no idea my presence challenged other people’s comfort. While I recognize the effects of my autistic behavior, labels such as aggressive should not be used to describe people who are otherwise well-meaning human beings. We are human beings who interact differently with our environment. My autism is not something be ashamed of.
The best thing non-autistic people can do is mindfully point out their concerns when appropriate and be understanding of our differences. We may look like your average husband, friend, or employee, but we are not. We also blend in without knowing we are masking our neurodivergent behavior. So, we often cannot tell ourselves without input. It is also important that we are given space to be ourselves. Masking our interests too much hurts our mental health, especially in the long term.
What is your advice for someone who thinks they might be autistic?
I recently published my article, entitled “Why Self-Diagnosis Must Be Discussed,” which covers self-diagnosis and offers some mindful suggestions. Until the mental health profession can improve research and care, I concluded that we should be temporarily supportive of self-diagnosis on an as-needed basis. I felt it would be best to offer guidance to ensure those who are not diagnosed or are unable to attain a diagnosis have support from an experienced autistic adult, like myself, or an autistic professional.
Unfortunately, affordability and access to a medical diagnosis are still barriers for many people around the world. If you are not taken seriously, a diagnosis will be elusive. Follow my suggestions and do the best you can. Advocates like me prioritize expedient changes in society. So, hopefully, in my lifetime, more accommodations can be made.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
I have had to rely entirely on lived experience and comparative analysis from interacting with other autistic people. There are no quality resources I personally know of to suggest. But that does not mean there are not any out there. This is just my experience.
Are there any autistic characters in books, TV, or movies that accurately reflect autism? Which ones?
I know of two from when I grew up that I identified with but were not depicted as being autistic. In the Star Trek Original Series films, Spock, who was played by the legendary actor Leonard Nimoy, was analytical, logic-driven, observant, insensitive at times, and always socially awkward. Even though he was depicted as being from a different race in the canon, I identified with him anyway because I saw it as a human being playing a fictional character. Not the other way around. A logical interpretation of acting that I’m sure Spock would find… fascinating.
I also really identified with the Star Trek: The Next Generation character Data, played by iconic actor Brent Spiner. For every reason the character Spock seemed similar to my now-known autistic behavior, the android character Data was too. Data just never seemed to fit in and was always trying to learn to be more human. Little did I know I was masking my autism to fit in just as much as he was in the show. As a testament to my fondness for his portrayal, when Data sacrificed himself at the end of Star Trek Nemesis, I cried. A lot. Both inside and outside the theater that night. That speaks volumes to what his acting meant to me.
To this day, I value Spiner’s depiction of the character as one of my earliest idols. As I look back at both characters when I re-watch films or television episodes, I see them in an autistic light because I feel so much like them now. Science fiction has also been a cornerstone of my life for a very long time. Star Trek has been perhaps one of the biggest inspirations for who I am as a human being today.
Greats like actors William Shatner, the legendary Patrick Stewart, Kate Mulgrew, who I still look up to as an empowering female captain character and one of my all-time favorites, and the casts of the 1990s shows and films, I sincerely want to thank you for broadening my imagination in ways that routinely stretch beyond the stars. May you live long and prosper.
Are you involved in any forms of autistic activism?
I prefer to refer to my efforts as “advocacy” rather than the sometimes negatively associated term “activism.” I do not focus on the legislature or politicians. They take too long, and most are much too deceptive to genuinely support autistic needs when we need support. Which is not to say I would not work with one to represent our needs. But it would have to be genuine. We matter. No smoke and mirror tactics of deception or leveraging our involvement for corrupt votes for either party (in the US). Our needs must be taken seriously if the goals I foresee are to be met when we need them most. Which is yesterday if I am being honest.
I am goal-oriented and focus directly on my people for a very good reason. Many of us have time-sensitive needs, including myself. All autistic people are my priority. Absolutely no exceptions. I can be their voice, and so I wield my experience for their benefit. Autistic people need capable, proactive, and outspoken advocates. I just hope people can see my genuine efforts to help all autistic people and are encouraged by my humility to work together. “We Need Everyone.”
Are there any autistic activists, autistic entrepreneurs, or autism groups you would like others to know about?
Since I have been so immersed in advocating for autistic people, including my own needs, I am more focused on what I can accomplish as a leader. I prefer to be the guide rather than follow someone who might not be taking our needs as seriously as they should be. Or someone who would exclude deserving autistic people from support or care. I also trust my instincts more now than I ever did. For example, on Twitter, I would strongly suggest following diagnosed autistic people who are welcoming and accepting of all autistic people.
I have seen a number of autistic people who purportedly block some of us because they cannot tolerate certain differences. This only serves to divide a widespread community that is in great need of unified representation. Non-autistic people, such as politicians, see this division and take advantage of it to exploit us for their own gains while not doing enough to genuinely help us succeed in life. Such divisiveness also makes people less likely to take us seriously. Who will if all anyone sees is us fighting amongst ourselves?
Rome wasn’t built in a day. I get it. These things take time. But many parts of the widespread autism community need a unified voice that takes our concerns seriously now in a more productivity-oriented way than what has been done mostly as awareness. Nothing need be sacrificed. I will be the one to personally sacrifice myself to ensure no one is left behind. Unless it is me, as I make sure no one is forgotten.
I would like to take this opportunity to offer much respect to my fellow late-diagnosed autistic adults. I have found several on Twitter who share their experiences and mindfully try to guide others. Some are currently taking a break to recoup from their stressful lives. Others trudge onward, making sure those of us who are new to the autism experience on social media can adapt as best we can. Thank you for your guidance. We need you. All of us need you. We need each other. Thank you for stepping up to the challenges of being autistic in a non-autistic society.
That includes the interviewer, who herself is an autistic mental health professional. Thank you, Jackie, for giving me a splendid opportunity to share my life and ongoing journey. I am more than my autism, but I am me because of it. And for that, I am proud. I am proud of you too.
Connecting with You
If someone would like to connect with you, how can they reach you?
For now, with professional inquiries, I would encourage interested parties to reach out to me via Twitter or by leaving a comment response on my Medium writing. I would very much love to expand my networking reach, but more importantly, to find employment related to autism research and development. I would also be interested in suicide prevention, as I have a wealth of lived experience that I believe can help improve prevention efforts.
For personal inquiries, I humbly encourage you to follow me on Twitter, as that is my go-to for networking and sharing my life experiences. Much can be learned from my insightful writing on Medium as well.
Do you have any works, websites, or other creative ventures you would like to share with others?
I have an account on Medium, where I have been publishing writing about autism and my life experiences. Here is the link: https://jimirion.medium.com/
Beginning on March 29th, I published for 34 days in a row, for April 2023, to talk about a wide variety of autism topics, from personal experiences to autism traits. This was inspired by an autistic follower on Twitter who praised my ability to articulate what autism is like. If you would like to follow the journey, the link below is the first in this series. Each article is roughly three minutes long and contains the most digestible writing about autism I have done so far. Since I did this as a series, each article is linked to the next at the end for ease of access. So all you have to do is click to keep reading.
For mental health administrators, professionals, and employers, I have three important publications I would like to prioritize:
The article below is of exceptional importance. It connects autistic special interests and monotropism to the destructive effects of masking those tendencies, such as suicide and PTSD. I would be most grateful if this article were included and emphasized.
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