Autism Interview #187: Jessica Jahns on Late Diagnosis, Disclosure, and the Workplace

Jessica Jahns is a late-diagnosed Senior Data Analyst from Oregon with an interest in autism advocacy and allyship. She blogs at Autisticoronapoliticalifragilisticexpialidocious and is a self-described deep-thinker, draw-er of connections, observer and lover of humanity, supporter of all the proverbial “little guys,” and trauma-informed survivor. This week she shared her experience as a late-diagnosed adult coming to terms with her diagnosis and advocating in the workplace.

How did you become aware of your Autistic identity? What prompted you to pursue a diagnosis as an adult?

My diagnosis actually came as a complete surprise to me and probably saved my career. It all started when my company office was slated to go through a physical remodeling and all the plans we were told had my department moving into compact rows of desks in an open office setting when we used to have semi-private or small group (2-4 people) cubicles. Every description given (light and bright, lots of windows, etc.) was intended to be desirable for employees, but I knew from the first announcement that it was going to be more difficult to impossible for me to carry on working with the same amount of focus and quality I was known for and proud of.

After much discussion with my direct supervisor and management up to my department head, I was consistently met with statements like “why don’t you just wait and see” or ” try to stick it out; I’m sure it won’t be that bad.” Once we moved to our new space, as I predicted (in terminology I know now), I was nearly melting down on a daily basis. I withdrew socially, my quality and especially quantity of work suffered, and I spent as much time away from my desk as possible, escaping to the ladies room or the elevator lobby, just to be able to breathe.

In my department, we had a solid work-from-home option as a policy and some people in the department already worked nearly full time from home. I already worked from home one day per week, but when I asked for a schedule accommodation to increase my WFH time, I was told that what the department heads determined was “fair” was that nobody was allowed to change their schedule, for some reason.

So I took all this to my regular weekly therapy appointment with my therapist whom I already had a years-long established relationship. In a completely tearful meltdown, I said that I was going to have to leave my job–like today. In response, he said he thought I was likely on the spectrum, which had never occurred to me in the least. I did a short quiz in my office visit that day, and he sent me back to the office with a signed letter referencing ASD – formerly known as Aspergers and that note went immediately to my boss, my department head, and my HR rep, which allowed me to worked out more time working from home. That was in the late summer of 2019, just over 2 years ago.

As far as my “autistic identity,” I think I am still developing that. Part of my self-discovery work has been writing, which I started really focusing on via my pandemic-instigated blog. I still have no real idea whether my experience is typical or not, or whether the traits in myself that I am recalling within my new Autistic frame are due to autism or they’re just me. I expect it’ll take me the rest of my life to figure out my autistic identity.

Can you give an example either in school, at work, or anywhere in society of a peer/teacher/employer, institution etc. who acted in a way to attempt inclusivity, but ended up not being very inclusive?

Nearly 2 years ago, my company got acquired (again), and I started working on acquiring new contacts with the newly related colleagues. One thing I decided to join, in light of my very recent diagnosis and my personal immersion in all the into about neurodiversity that I could get my hands on, was my new company’s joint D&I Council, which was led by the new parent company’s HR director (Chief People Officer, in company parlance).

As the council was just getting organized, I didn’t think I would necessarily have much to contribute, other than my representation of the ND community, which was unique in the group. So unique, in fact, that, in the year end recap/planning meeting in December 2020, the Chief People Officer was excited to speculate out loud in our 30+ person meeting that maybe the pandemic would be improving in 2021 and I (me, Jessica) would be able to start attending recruiting fairs to help represent the company and speak to potential employees about how great our company is to work for.

I was speechless. We were, of course, all working from home at this time, and I immediately broke down, really confused and humiliated and just furious that the HEAD OF HR would say something like that. She doesn’t know me at all, and she had never heard the word neurodiversity until I brought it up in an earlier D&I meeting that year.

After a few days of trying to forget it ever happened, I finally gathered my thoughts and tried to recount what had happened in the meeting to one of my allies, a neurotypical translator, of sorts, who worked at the other division longer. I hoped she could help me put the whole experience into perspective, but she was equally pissed on my behalf. She helped me write an email to the Chief People Officer that would clear up any ambiguity on my end about whether she actually had expectations of me related to this or not and to clearly state that this would NOT be something I would be willing to do and why not. I ran the email by my ally as well and we polished up the tone and tact a little bit, but the sentiment remained.

When I actually sent the message to the woman, who clearly has more power in the situation than I do, she called me to discuss, ending with the suggestion that I should talk to my HR rep (who reports to her) to “clear things up,” essentially putting me on notice from an HR perspective. I eventually did speak with the HR rep and my department head in what was quite a cathartic conversation where I got to tell MANY stories about shit that I had put up with and let slide for years with bad behavior (bordering on abusive) from others at the company and wondering why they would ever think that I would feel safe to share my perspective about conflicts, given this experience.

Since that conversation, none of this has really been spoken of since, and I have dropped out of the D&I Council after recruiting another ND person to join. I just don’t think I’ll ever really feel comfortable with that same person essentially operating the council her way.

How have you handled diagnosis disclosure at work or among friends?

The only way I know how. Given my complete breakdown from the work situation and the fact that I don’t have many friends to speak of, I have gone with full disclosure all the time. I would be the one wearing a sign or name badge that says “Hello, my name is autistic.” Not only is it a large part of my life currently, because I am still learning so much, but also it is way easier than trying to hide it. I’ve always been pretty straightforward about things and being a representative for the autistic community has actually brought me great contentment and joy over the last couple years. That hasn’t happened for a while.

Your post about competence struck a chord with me. How have you tried to determine competence and authenticity in those around you?

Well this is going to be an unsatisfactory answer, but I feel like I’ve been pretty blessed from birth with an amazing bullshit detector. Fake people give me the heebie-jeebies. And authenticity has always been so much more meaningful to me in relationships than anything else. When I was still dating, I would often test guys by either not shaving my legs, or dressing provocatively (not necessarily in a sexy way) or some other thing, just to see how they would react. It was all genuine on my part, i.e. sometimes I do dress like that and sometimes I don’t shave my legs, so those sorts of things will weed out the bad ones more quickly, you know?

Some people might consider this an unconscious bias on my part, but I’ve never felt especially sentimental about people like that. I am respectful and understand well how other people operate, but I also just get a feeling, a vibe from a person when I meet them and sometimes that’s enough for me to just leave the room and never call/speak to/see them again. In retrospect, this may be one of the few areas where I generally placed a lot of trust in my own intuition. I question myself a lot in other areas, but I have always managed to find the good people and ditch the bad ones.

What has helped you develop a positive Autistic identity as an adult?

This is a big one and I have really been trying to think about this a lot. There is not much choice one has about how/where they are born or into what circumstances, but I have to say I am the luckiest late-diagnosed person there could be because I kinda think both my parents are also on the spectrum. I come from a family of hermits, to a degree. My dad worked for the federal government (US Forest Service) his whole career, so we spent most of my early childhood in very rural, forested places with very small communities of kids/friends and few distractions. I LOVED to be outdoors and we went camping a LOT. I could have been homeless because living in a tent was a joy for me, reading books by flashlight, etc. I remember climbing trees, throwing rocks into rivers, digging in dirt, catching frogs and snakes, all kinds of dirty, gritty, outdoor things. We also always had a lot of pets, dogs, cats, rats, guinea pigs, birds, goats, sheep, chickens, ducks, etc. When I was older (12-ish), we moved to “the city,” which was a small town with about 14,000 people. If it wasn’t for my solid, slow-paced, early childhood, I’m sure my autistic experience would have been much different.

What are you most passionate about?

My passions have ebbed and flowed over time, shifting and changing and rotating. I have always been passionate about social justice, environmental causes and public policy, broadly. I also think about systems, in general, a LOT! I have not been especially active in any specific organizations or anything, but that’s mainly due to my social anxiety/introversion. When I have extra funds to donate, I donate to causes in those areas, including political candidates/issue campaigns.

I have also always been very passionate about music, both listening and playing/performing. As a child, my family went to many concerts as part of our county fair trips in the Oregon summers and since high school, I have been to hundreds of extremely memorable live shows, including seeing Nirvana in a barn on New Years Day, 1994, 3 months before Kurt Cobain passed away. As for my own music-making, I was 8 years old when I inherited a 1913 Beuscher alto saxophone from my grandfather’s cousin (whom I had never met) and I was off and running. I started with band in school with that sax in 4th grade and played in concert and marching bands all the way through college. Even before then, I was always listening to whatever radio stations made it to our rural homes to sing along, picking out lead and background vocals, lead and rhythm guitars and bass parts. I could play most pop songs on my sax by ear within about 5 minutes of noodling around, even those that are played in really strange key signatures. After many years and multiple saxophones, I now play soprano, alto, tenor and baritone saxophones (not at the same time, of course) with the Power Pep Band (https://powerpepband.com/), though we have been on Covid hiatus for most of the last 2 years.

Specifically now, though, I am fully dedicated to learning more about neurodiversity, reframing my life experiences in light of my autism diagnosis and finding tweaks to my routines that can right-size my impact in the world. This is something the diagnosis has helped me see more clearly, that I can take action that has a positive effect on others and not feel the constant need to make myself as small as possible in all cases.

Spread the word. Share this post!

Leave Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.