Josh, neurodiverse: When my neurologist suggested that I get tested, I was 43 years old. I knew nothing about autism spectrum disorders (ASD) beyond the typical jokes, so did some research. The negativity online wasn’t awesome. I did the testing, which wasn’t bad at all, and the guy I worked with was great - though it was long and drawn out over quite a while and many sessions. He talked to people close to me: my wife and my parents - and of course, a lot with me. I have been surrounded by doctors and medical facilities my entire life due to epilepsy, and grew up finding it easy to be open with them, so this didn’t bother me.
3 months after Josh's ASD diagnosis and just a few days before our daughter was born.
Diagnosis delivered
After months of meetings, assessments, and tests, and a few sessions with my parents and wife (separately), we had our conclusion and findings session. What I found most interesting were the observations and opinions of others. I assume it interested me so much because I am rather incapable of assessing others (and their thoughts and feelings), except on a very basic level. If someone is a threat or in need, I am very quick to realize it, but if someone is upset or angry it's likely I never will without being told (ask my wife). My clinician/counselor reported that his greatest difficulty was that my parents were tight-lipped. At the end of the day, though, across the board I scored ASD and received my diagnosis.
When the clinician was explaining his findings, he really stressed that this might be uncomfortable and upsetting, which thankfully isn’t something I have an issue with. While I didn’t know exactly where I fell on the spectrum, I was very aware of deficiencies and short-comings in my life. I learned that my ability to communicate as well as to foster interpersonal relationships are exceptionally low: that of a kindergartner and in the 2nd percentile, which, frankly, makes me laugh. My ability to express myself as well as to 'participate in play' is that of the age of an individual in late elementary school. But at least my ability to communicate through writing was solid. For me there was no pain involved in any part of this.
If I were being completely honest, receiving my ASD diagnosis was the best thing that ever happened to me. It was as if in that one moment someone took every terrible thing that happened and made sense of them all. My list of terrible is damn extensive, so it was overwhelming a bit, but in a good way. A very, very good way. It was like I was pardoned. Not that I think I am exempt from ownership, but I never beat myself up in the ways I had my entire life again.
What is funny to me is that I went so long undetected. Well, with one exception. When I was in 6th grade my homeroom teacher had a conference with my mom. She told mom, and I will never forget this because I think its hilarious (probably should have been a sign), “That I am retarded.” This was in the mid-eighties, for context, and I don't condone the use of this word. At the time, my mom came unglued and of course wanted blood. It never phased me, and decades rolled on. I can’t help but wonder: if that teacher were taken seriously, how different my life would have been. I would have likely avoided so much horrible. My parents did their best with what they had, and life happens. But I very much believe what is in the past is in the past and there isn’t any changing it so why dwell on it.
The aftermath
Another aspect of being diagnosed that I found interesting was the reception I received when I shared my diagnosis with people. I had several close friends laugh and say, “no shit”, which just made me think that they knew me, so their reaction didn’t bother me. What was so weird to me was the people who were turned off by my diagnosis - for lack of a better way to say it. One person (who I no longer have anything to do with) went into a rant about people who expect special treatment. Another began acting around me as one might around a dog who was known to have bitten someone before. It weirded me out to the point that we just drifted apart. Another acquaintance immediately tried to one-up me, which was bizarre. Some people were cool and accepting... and some were not. But at least I got to know who was who, and I am good at deleting people from my life. Ultimately, nothing anyone could say to me will be worse than what I’ve said to myself.
Since being diagnosed I have completely changed how I look at things - at least how I look at myself. You’re your own worst critique, and I was bad. But that was a fallacy, because while I was harsh to myself, I had no idea what the problem actually was. Sure, I absolutely was horrible at dating and being a friend. But it wasn’t because I was a piece of sh** as I had always thought. I think of it more so, now, that a screwdriver makes a terrible hammer, and for forty-some years I was struggling because I was a round peg being jammed into a square hole. At the end of the day, this world wasn’t made for me, and knowing that really gave me a new perspective. Now I really lean into my strengths. Things are no less challenging, but over all I am in a far better place with an understanding of why things are challenging.
What we wish we'd known: The diagnostic process was challenging - and at times, painful - but it was worth it.
The difficult path to diagnosis
Kelly, neurotypical: When it comes to the process we underwent to secure Josh' diagnosis, my memory is a little fuzzy (I was six months pregnant when Josh was formally diagnosed in 2019), but a few steps along the way are crystal clear.
The diagnostic process was not built for a married couple. I was asked to fill out extensive paperwork intended to assess my interactions with Josh and gather my observations about his areas of competency and difficulty. However - there was no paperwork available for a spouse to fill out. Instead, I had to fill out paperwork intended for a mother assessing her child.
Wife? Caregiver?
This gaping hole in the diagnostic process was incredibly damaging to me. We went down the road of diagnosis because Josh was really struggling, and I was already dealing with the difficulties of acting as a caretaker for a spouse. I wanted desperately to see him whole and to look at him as my husband - it did not help our marriage that I was forced to further see and assess him as a child and not an equal partner in our marriage. It has taken me a long time and it's taken a lot of work to get us both on equal footing again in our marriage. I truly believe that if the process had taken into account that we are a married couple, the transition to living as a neurodivergent couple would have been better for us. The path to diagnosis was difficult enough without the added challenge of a system that didn't even seem to acknowledge the existence of a newly diagnosed, nearly middle-aged man, married to a neurotypical woman.
I vividly remember how difficult the diagnostic appointments were for Josh. Topics were explored that he had spent a lifetime pushing down or avoiding - and rightfully so, because prior to his ASD diagnosis and subsequent therapy sessions, he didn't have the tools he needed to deal with a lot of things.
The aftermath
After each appointment with the diagnostician, it was like Josh' brain had been thrown into a blender. He needed to be alone and in a quiet room for hours (sometimes days) to get his thoughts sorted out again. He would pass from very depressed moments to moments of celebration ('I finally understand what THAT was all about!'). It was a challenge to keep up, especially while I was on the outside looking in.
Now I understand that Josh was reassessing everything in his past, present, and future, and he had to do that without me. At the time, it felt like I was nothing more than an observer at an enormously important transition in his life. And I was pregnant.
I'm a fixer - it wasn't easy for me (but maybe it was good for me) to see that I really couldn't do anything for Josh except leave him alone. At a time when most women expect to be coddled and pampered (my first pregnancy), I had to learn to put Josh' needs first in many ways. It was hard and I often felt alone. But I'm grateful that he received his ASD diagnosis, because it allowed me to truly know my husband, and to be in a much better relationship with him than we ever had before we went through this process.
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