I have autism spectrum disorder

Last summer, as the pandemic (and everything else about the world) started to get really serious, I asked the question about whether or not I in fact had ASD and ADHD. As I said then, it was suggested by therapists that I probably should find out in a formal way. Even then it had been on my mind for a few years. This summer, I started to think more about it for a number of reasons, and decided it was time to endure the diagnostic gauntlet and find out. I finally had my evaluation this week, and yes, I can finally confirm in midlife that I have both conditions. I'm not at all surprised. It just means vastly different things at this stage of my life than if I were a child today.

Defining the diagnosis

There's a lot to unpack here, so let's start with the stuff that you may not see or understand if you don't have a child with a similar diagnosis. They call it a "spectrum" because the condition described varies a great deal from person to person. And you'll notice I don't say in terms of "severity," because it's not correct to assume that being neurologically atypical is bad. When I was a kid, the unfortunate thing is that autism was viewed as Rainman at the adult end and non-verbal children on the other end. That there are more diagnosed cases now is mostly because the definition is a lot wider. The definition is also evolving because the context changes for most people as they get older. While clinically it is often viewed as a disability, one would generally consider a disability to be an impairment of some kind, in this case typically with social interaction, inflexibility and exhibiting repetitive behaviors, among other things. If these are serious enough, a person may need support, but at many levels a person may simply learn to cope or compensate for any of these impairments. The distribution of IQ scores tends to be slightly lower than average for people with autism, but I read an abstract that indicated that may even out as more people are diagnosed. The hardest thing to understand is that the same impairments may actually make for super powers, in the figurative sense, able to do things a neurotypical person can not. How's that for making it harder to understand?

Diagnosis for an adult can be tricky, again, because one can generally compensate for things that a child may find difficult. In my case, my childhood history had plenty of obvious signs, including social difficulties, gravitation toward adults instead of peers, extreme picky eating, an early aversion to sand and getting in water... it was a pretty long list. Combined with a number of personality inventories and surveys, the math was fairly straight forward. One of the more revealing things about compensating for any "impairments" is that Diana scored me very differently in her inventory responses, and she knows me better than anyone. For example, you probably wouldn't know that engaging in trivial small talk is kind of exhausting to me, but I can do it and you wouldn't know that. The ADHD bit was easy too, when you look at something like my high school ACT score in the top 98th percentile but my GPA was painfully average. College was the same, and did not correlate to my IQ score, which is also unusually high. I wasn't "bored" or "unchallenged" as people suggested back then, I just didn't do things I wasn't that interested in.

Attribution

Having relived many parts of my life story for the purpose of this evaluation, difficult as it was, gives me an opportunity to reframe a lot of self-perception. I remember in college in particular feeling like my failures in terms of relationships, my grades and certain conflicts were the result of deep personality flaws. Understanding now that my wiring may have played a factor in this, that I can attribute some of it to something other than my decisions, really changes things dramatically. I'm careful to say that it's not an excuse for poor decisions, because frankly even poor decisions are useful if they result in learning.

Real life example, I had this epic meltdown in fifth grade. The teacher accused me of something that I didn't do, and I could not reconcile being held responsible for whatever it was. My mom had to pick me up from school. There were discussions with the teacher and my parents about how I thought I was perfect, and I believed it for the sake of moving forward, though it made less sense than being accused of whatever it was. Recalling this was one of the first things that came to mind when I suspected, yeah, what my kid is going through, that's me.

But even in a more adult context, I can call out challenging interactions with people that I could easily chalk up to missing certain social cues. I can see why even in situations that I can fully compensate for whatever impairments that my brain wiring may cause, I'm exhausted by that compensation. I may even feel justified in certain professional scenarios where I felt I was treated unfairly.

I want to be clear that attributing difficulty to autism is not me making excuses. While the psychologist was quick to point out that one has to give themselves a little room for the things that may not come easy, I still have to make choices and be self-aware enough that I'm making the "right" choices in life. What changes now is the context. The inputs always included this thing I didn't factor in before.

The politics of labels

Something I immediately noticed after Simon was diagnosed, is that there are many communities of people, including parents and autistic people themselves, who have a great many conflicting opinions about labeling autism. I find it kind of funny, and I think I'm entitled now to find it funny, that the core characteristic of inflexibility means that almost every issue in those communities has two inflexible sides. Heck, that I'm so into gray areas is one of the reasons I was skeptical of my own diagnosis. But while the psychologist evaluating me said I would typically be labeled as "high functioning," given my adaptation, compensation and high IQ, there's a pretty vocal group of people that want to throw that term away since it implies there are "low functioning" people. I mean, there are arguments even about self-labeling as "autistic" or "on the spectrum."

These are not unreasonable concerns, because the words often dictate what kind of support or services you're eligible for. But clinically, it's also hard to know how to help people if they're not speaking the same language to describe the nature of autism. I don't even know how or if I want to self-identify, or in what circumstances. I think in my urge to be self-aware as a conduit to self-improvement, I've already had many discussions with people, especially professionally, about what my blind spots might be because of my therapist consensus around a likely diagnosis. I imagine these can (or have) been used against me, but it seems like the right thing to do. And if you're an optimist, you can see ways that an apparent impairment is actually an opportunity, which I'll get to later.

For me, I think the clinical summary from my evaluation provides some necessary labels. But I liked this part:

The DSM-5 stresses that there be functional impairment in order to diagnose autism but, there are a myriad of autistic people who are not overly disordered or disabled. Autism is a neuro-type, a spectrum of multiple continuums of characteristics, each of which span a wide range of expression, which can change depending on both acute and chronic stressors.

In other words, I'm not Ray in Rainman or a non-verbal child, and in most adult situations, I'm able to adult just fine.

Impairments and opportunities

Some years ago I remember reading a number of essays about why ADHD was not only not an impairment, but an asset. There are simply many situations in life where that energy can be useful. I can relate, now that I know it's there, because it explains why I seem to be able to context switch a lot as a manager, whereas in a maker position, it was hard for me to buckle down and do one specific things for hours unless I was totally into it. It all makes sense.

Many people with autism struggle to deal with ambiguity and abstract things. I believe that I'm firmly in that camp, but again, it's possible to flip that on its head and show how it's a strength. I've had a ton of interview situations over the years where the interviewer wanted to iterate over some abstract concept, and I struggled with it every time. But here's the thing, in leadership positions, where you have to get people together and move them collectively toward certain outcomes, reducing ambiguity is something you can do at super hero levels. I think this is why I'm good at project management, because I strive for that common language around predictable outcomes, which means that makers build things that decision makers want. It doesn't mean that I'm averse to change, pivots or deviation, because even in those cases I'm good at getting everyone to the new thing they're driving toward.

I realize that not every impairment can be turned into a strength, but this gets back to my earlier comment that I can't exactly call autism a disability. I mean, scientists like Einstein, engineers like Musk, deep product people like Steve Jobs, you can't say that any of them "suffered" from autism. Many of the world's great artists and entertainers are in this boat, too. If autism limits certain conventional inhibitions, it stands to reason that we can try impossible things that are not expected to succeed.

I have to be careful here, too, because I don't want to suggest that a non-verbal child who can't care for himself just hasn't found his opportunity yet. Impairments can obviously be debilitating, especially if they're severe. I think for that cohort of people who are average and above, there are still accommodations that may enable long-term success. We've had to put these out there for Simon, and in the next few years, we'll see how well he develops coping skills. My non-expert opinion is that he has a lot of anxiety about the learning process itself, but seems to work with what he's mastered with ease. I'm not sure what an adjusted adult may need, other than a little grace to overlook some of the social deviations they may exhibit. That's why my eye contact isn't great.

The parenting connection

I think this changes my relationship with Simon, but I don't know how yet. When I first told him, he was very sad for me, because as he understood it, life would be very hard for me the way it was sometimes for him. We're still talking about how my biggest struggles are in the past, when I was his age. I have to be careful about that, because I know his social difficulties will most certainly get worse before they get better.

The challenging part for me is something that I've talked about before. I can't model my understanding of his challenges through my own lens, because no two people are the same. But especially having recently relived eating lunch in 9th grade in the guidance counselor conference room because I was being picked on, that's not a great feeling to know he may endure similar things. I can appreciate that he will have challenging encounters, and I feel an enormous burden to figure out how to help him not just get through them, but learn from them. That can be hard when I'm the bad guy that he's sure has no appreciation for what he's feeling.

And therein lies the opportunity, I hope. Even though we certainly have different experiences, he's closer to a place where he logically can't exclude me as not being understanding. His anxiety is definitely higher than mine, and discomfort over even mundane things triggers him. But I get that, and I have to get beyond my instinct of "get over it" without giving him too many shortcuts and accommodations for everything. It's not easy.

Now what?

I am not yet at the point where I really know what to do with this. The ADHD part, something you can manage with medication, I'm not sure that I need to. The nature of my work in recent years is that I context switch a lot, and if being able to do that successfully is a "disorder," then I don't need to fix it. The autism part is way harder to figure out, and you can't medicate for that.

I don't know that I want to identify with it, and I'm certain it doesn't have to define me. I think it's a part of my story, mostly. I don't know if it needs to be more than that.

It wouldn't be surprising to hear that I believe I need to be more of an advocate around autism issues, for me and Simon. The psychologist made the point that my empathy here may contribute to my deep beliefs about standing up for marginalized people, that social justice and equality are important because I'm empathetic as a person who has been socially marginalized as a child. That makes a ton of sense to me.

I think we have to stop avoiding the subject as well. Autism is not synonymous with brokenness. I don't know if Gen-X'ers will widely seek out this kind of diagnosis, but at least 1 in 50 adults have autism whether they know it or not, and every younger generation came of age with increasing childhood identification. That neurodiversity is out there, and we would be OK talking about it, and what it means to include people who are wired a little differently.

I can tell you this, I'm sure I'll keep writing about it.