I’ve always been a fairly low energy person. My lack of “spoons” in life never really matched my physical situation or age. As a teenager I slept a lot and rarely went out or partied or anything. In my twenties I slept just as much and went out even less. I think I’ve been to a bar maybe ten times in my life? In my thirties, I’m finding it wearying just to get dressed in the morning. Adding anything more to that causes extreme stress.
Mental illness takes a lot out of you. OCD is exhausting and you spend almost every minute of the day obsessing or compulsively responding to those obsessions when it gets bad. In high school I had debilitating hypochondria (that thankfully has eased up a little bit to make way for my debilitating OCD and only flares up when I’m really stressed). I spent, I kid you not, nearly every day convinced I was going to die from some major illness. I was obsessed with it. I couldn’t stop thinking about each bump and irregularity I found. I obsessively checked and rechecked every inch I could find. Over the years this extreme health anxiety morphed into a stronger dose of the OCD I had lived with my entire life, and now it finds me almost unable to leave the house and barely able to function. If you didn’t know this, surprise! I don’t always “look sick” and I certainly haven’t told you how bad it is.
After leaving a job that had placed way too much demand on me mentally and emotionally, I had the chance to take some time to reflect on myself and what I needed. Here’s what I found out: there is something going on with me.
My entire life I have always been…behind? Like, not particularly interested in the social demands appropriate for my age, or not able to keep up with the demands expected of my peers. When I was a kid, well, I was just a kid. When I was a teenager, well, I was still pretty much a kid, wasn’t I? When I was in my twenties, well, I was still pretty much a teenager, wasn’t I? But when I hit thirty, and then thirty-one, something was off. I couldn’t fall back on this concept of extended childhood anymore, which applied far more to me than almost any of the peers I knew.
I have way too few spoons for the demands in my life. The least demanding day for me is a day off, and the only demands I face are getting out of bed, getting dressed, making breakfast, and sitting down at my computer to work on my projects. When I started to find that so prohibitively exhausting I just wanted to stay in bed, I started digging deeper.
Could it be alcohol abuse related?
I am a victim of child abuse (mental/emotional/verbal) and the child of an alcoholic parent. I was taken aback to see a list of personality traits that can relate to this which apply to my life very closely:
Need for control: I have the need to control my emotions and my environment. I cannot always control my external environment (in fact, in life I have had very little control and spent more time than I’d like to admit couch surfing as a child and adult) so instead I have adopted a rigid internal set of rules that must be followed at all times. These rules are manifested through my OCD. “Rules” are things like which fabrics can touch other fabrics and the obsessive need to prevent contamination, or what minute on the clock things need to be completed by.
A constant sense of tension: I almost always feel anxious, tense, and stressed even in situations that are not tense and stressful. I almost never feel safe. The only time I feel safe is in bed, and even then I can feel tense, overly worried, or dissociated if something isn’t right in my life. I scan the horizon for future threats and worry far in advance of these things. Conflict or potential conflict (drama) can ignite these feelings of being unsettled or disassociated and so I try to avoid it at all costs.
Fear of intimacy and emotions: I am disturbed by intimacy. I chalked this up to being on the asexual spectrum (gray-ace) but I think there’s more to it than that. I feel deeply uncomfortable connecting to others. I refuse to make eye contact except when necessary, and only for short periods of time. Likewise, the feeling of experiencing emotions can be so alarming and unpleasant that I will detach and disassociate from them when they happen, even happy emotions. I don’t like to feel anything too strongly. I am afraid of being inundated or overwhelmed.
Fear of variability in my environment: I don’t like change. I feel threatened by small changes or things that fluctuate, are uncertain, or cannot be defined. If you know me, you know that I am prone to black and white, categorical thinking. I like systems with clearly defined categories (such as MBTI). I struggle with things that are hazy and nebulous. I like plans to be defined, I like to know what to predict and expect. If I want to try something new, I want to do it on my terms. I can get set in grooves of the familiar, and this is due to wanting a consistent environment. With an alcoholic parent nothing is consistent and their reactions never match a logical cause. Cause and effect are broken concepts at that point, so needing a sense of consistency in environment makes sense.
A deep sense of shame, self-hatred, and unexpressed grief: This one is pretty obvious. I have been bullied, abused, and humiliated so why wouldn’t I feel these things? I was also punished for expressing my emotions as a kid so I internalized my expression of frustration through my OCD. My OCD is a valve for me to express my rage.
Some things on the list of symptoms for adult children of alcoholics really didn’t apply to me. I’m not a seeker of drama and chaos because “that’s all I know.” I hate chaos and seek to minimize it. I don’t desire patterns of abuse or control. I fear punishment and seek clarification but I don’t obsessively seek approval from others. I don’t get *accepted* by others so I don’t really seek acceptance. I don’t understand or value the rules of social engagement so I don’t try to fix myself through social appeal or perfectionism. None of the ways that children of alcoholic parents seek to attach themselves to others in their adult relationships really apply to me at all, except to say that I fear and distrust everyone outside of a few trusted people.
Still, I found myself in these symptoms in a big way. My detachment to emotions; my lack of affective empathy; my difficulties with social interaction and intimacy; my internal rigidity and need for structure/routine/consistency; my need for certainty and intolerance of instability or chaos, even in the realm of ideas or abstractions; my OCD, which is itself a mechanism for establishing rules and structure, however arbitrary and self-harming they may be.
I get frustrated a lot. I wouldn’t call them tantrums but I have little fits of frustration sometimes that have, at their worst, resulted in actual property damage or harm to myself. My OCD keeps this anger inside. If I just let the feelings out, I would meltdown like a child and tear everything off the walls. I feel so overwhelmed by sensation, by uncertainty, by invisible expectations. I am so incredibly overwhelmed all the time.
But, three decades into life, it should be pretty clear what is expected of me. It should be obvious to me what sensations I can expect to feel or what things I can expect to encounter. I know myself well enough by now. I’ve studied my personality obsessively. I’ve had hours of discussion with others wherein I reassure them that I’m just “getting on my feet” and “figuring things out.”
People believe me to be competent and capable, intelligent and fully able to contribute something. But sometimes I walk around my own house feeling eerie and disassociated if a disruption to my routine has occurred, like I’m walking in a funhouse mirrored version of my life. Everything looks odd and distorted. Nothing feels right. I feel unnerved and I can’t explain why. I feel this way almost any time a change occurs, and the change can be something minor, like a disrupted plan I wasn’t expecting or people coming and going from my house.
By all accounts, my life is getting harder, not easier. I keep being struck by something I have been reading over and over, paraphrased, in my context, as may become overwhelmed when demands exceed limited capacities. That bit is from diagnostic criteria from the DSM-5.
In other words, my capacities are limited and always have been. It’s not until I started to hit meaningful difficulties (working, holding a job, driving, traveling alone, maintaining intimate relationships, and even simpler things like grocery shopping or life management) that I began to suspect I had a deeper problem. Yes, I’ve had emotional difficulties in my life, but plenty of abused children go on to live successful, independent lives. As I age, I am having more and more difficulty maintaining independence.
This has been a matter of such deep shame to me that I have only told those close to me and those affected directly by it. I have struggled with suicidal thoughts and depression over this. I haven’t been ready to share the extent of the difficulties I have been having out of a deep shame that it was my fault, that I wasn’t trying hard enough, that I was lazy or entitled or awful. But recently I have stumbled on something that has completely changed my perspective on what may be going on.
I listed some of the emotional difficulties I was having as the result of the abuse I experienced. Along with that are some of the mental difficulties I struggle with such as OCD, issues focusing and coping with daily tasks and demands, and feeling overwhelmed and anxious. But what I hadn’t considered are the potential cognitive and developmental issues underlying it all. Little things that, on their own, aren’t enough to cause impairment, but create a collective impairment over time.
Little things such as my difficulties processing verbal information or hearing in a crowded environment, or needing to watch shows with the closed captioning on so I can understand what’s being said. Or struggling to drive in busy environments because it is difficult to focus on too much incoming sensory stimuli at once. Or my inability to quickly process and act on information in the heat of the moment (an emergency will make me freeze; I’m a terrible “first responder”). Picking at my skin so much I bleed. Having difficulty focusing in sensory demanding environments. Having tactile sensitivities and strong taste preferences. Toe-walking. Focusing on the wrong things. Picking up the “wrong” cues.
I strongly suspect that I may be on the autism spectrum.
I won’t know for sure without a proper diagnosis from someone trained in assessing autism in adults, especially in female bodied people (Asperger’s presents differently in females than males, and many females have adapted to their difficulties in ways that make it difficult to diagnose at times). This can be difficult and costly to attain in adulthood, I am told, so it may take awhile before I receive a formal diagnosis. However, reading the accounts of adults with autism had me thinking, “hey, that sounds like me!” and “I do that too!” and “wait, that’s an autism thing? I thought it was just a me thing!” and “….wait a minute.”
We all think we know what autism looks like, don’t we? What’s the first image that comes into your mind when you hear that word? Autism Parents™ valiantly posting about their struggles with a child who will never fully gain independence, posting videos of their child’s meltdowns? Autism awareness campaigns? (My first introduction to the topic was With The Light, a manga about an autistic child.) We think of autism as a series of severe disabilities, and it can include that, but it is a spectrum of severity and ability. So the truth is right in front of us: we don’t fully know what autism looks like because autism is expressed and experienced differently in every person who has it. What looks like autism in one person is another person’s deep struggle to compensate for their deficits.
Because of those stereotypical images in society of what autism looks like, I had never considered it as a possibility for me even though the topic swirled around me for years. That is, until I started reading the narratives of adults with Asperger’s and found myself in their stories in a big way. Neurodivergence became a Special Interest (seriously, my friends are sick of hearing me talk about this) and I began to research in earnest, finding more and more of myself along the way. I contacted my GP, who contacted a psychologist, who in turn referred me to an autism specialist so I can have a formal assessment. I am in the middle of that process now.
Discovering this possibility in myself has been profound. I’ve felt a sense of grief over realizing that I may, in a sense, be disabled instead of having something that I had always assumed I would “get over” someday. But on the other hand, I feel such a deep relief that it honestly feels like a spiritual experience. Nothing in my life has been so healing as knowing that this isn’t my fault. I’m not actually stupid. I just have difficulties processing things in the same way, or as quickly, as other people.
I’m not going to accept blame for my difficulties anymore. I’m not going to feel like I’m stupid because I’m a slow learner or have trouble putting old parts together in new contexts. I’m not going to feel stupid for having “selective hearing” or missing half of what people say to me. I’m not going to feel stupid for being distracted by parts of people’s faces or patterns rather than focusing on the meaning of connection. I’m not going to feel stupid for being repetitive or hyper-fixated on certain things. I’m not going to feel stupid for needing to ask clarifying questions or ask for help long after I should “know by now.”
I need extra help, and it’s okay for me to ask for it. It’s okay for me to feel overwhelmed and anxious by sensory difficulties (changes, disruptions, cold temperatures, certain fabrics). It’s okay for me to feel my emotions and sensations fully and realize that I’ve been having difficulties my whole life and didn’t realize it. Now I know, and now I’m going to start asking for the help and patience that I need.
I want to share my journey with you. This post has been deeply personal, and while you may not relate to it, I intended for it to be personal because I know that someone out there is in the same boat as me. Someone is looking at their life, surrounded by broken puzzle pieces, trying to put them all together. And that someone, like me, most likely turned to personality theory to figure out what’s different about them. That is why I’m telling my story, so that you may find a place to start with your own. Idionity has always been a project of exploration for the psyche and the self, so I will be exploring topics of neurodivergence in depth, including my diagnostic journey.
Thank you for reading, as always, and please feel free to comment and share your own discovery process.