The Struggle to Be

My counselor asked a question yesterday that stumped me. “If you had a magic wand, what you would want your life to be like?” Those sorts of questions have always been a challenge for me. I can imagine, even vividly imagine, all sorts of alternatives. In fact, I did that as a child, picking a point in the past and then focusing my mind on the idea that everything since that point had been a dream. But such questions always have a sense of unreality to them for me, especially the older I’ve gotten.

This is the life I have. A ‘me’ who had a different life wouldn’t actually be me. It’s a version of the disconnect I’ve felt when I’ve heard other adults who were teen parents say they regretted it, missed the life they could have had, and wished they had done something else. Was it hard being a teen parent? Sure. Sometimes it was incredibly hard. But saying I regret it or I wish it hadn’t happened feels to me like saying I wish my oldest daughter had never been born. In fact, if you follow the thread of my life, it’s basically saying I regret all my children. While I might have still had children, those hypothetical other children wouldn’t be the ones I actually have today. I deeply love all my children, and no matter how hard things have gotten, there has never been a day I’ve regretted their birth.

And the same is true of the rest of life. There’s good and bad. Some things are hard. There have been and continue to be struggles, but I don’t want a different life, per se, though I do want to live this one better. The bad things are just as much a part of who I am today as the good.

I was reminded of my blank-faced stare when my wife has asked me what I dream of doing now that the kids are grown. I enjoy discussing possible future trips with her. I enjoy doing things like the arts and food scene. But I don’t have a ‘bucket list’ or some similar set of dreams I need to achieve to make my life complete. And I have a hard time understanding the point, even though everyone around me seems to intuitively grasp it. If there’s something you want to do, start making a plan and then execute the plan. Until you’re ready to do that, what’s the point in creating a list? (Now lists that you actually plan to complete I totally understand, but that doesn’t seem to be what most people mean when asking about future dreams.)

Still, I stopped and gave the question serious consideration and, haltingly, honed in on one of my underlying struggles. I’m not really dissatisfied with my life. I want to improve my relationships with my older children. I need to work out how to relate better with my wife. I’m not a super social person, but I know I’ve been happier in the past when I’ve had at least one pretty close friend. That’s true even though it hasn’t happened very frequently and all such friendships have tended to fade for reasons I still don’t really understand. And my friendships have faded even when I’ve actually tried as hard as I could to keep them going.  While aspects of my job are extremely wearing, I enjoy the technical challenges it presents. I love learning and my job basically demands constant learning.

There aren’t really any drastic changes I would make to my life, magic wand or not. For the most part, this life fits me. That is, it would if I could actually live it. And it’s with that realization, I understood one aspect of my struggle.

It’s taking all the energy I have, and on some days more than I have, just to survive. Everything seems to require more effort. It’s hard to focus my attention without getting distracted. It’s hard to keep everything organized. And it’s harder than ever to limit the pull of things that aren’t part of what I need to do in that moment. Dealing with change and interruptions to routine are more difficult to manage now. It takes more effort to maintain an appropriate physical presentation and not do things that appear ‘odd’ to most people. I struggle more and more to process things I hear. The delays in my response are almost always noticeable now. Light is increasingly painful. Bright sun is barely tolerable even with my sunglasses and hats. Night driving makes it feel like headlights are stabbing into my eyes. And even in one on one social interactions, I find I often can’t keep up. Trying to catch all the social cues and provide the right responses has become incredibly draining.

Moreover, it’s been getting worse for a long time now, even though I had no idea what was happening. A decade ago I discovered I had sleep apnea, so I blamed my struggles on that. And I’m sure it was a factor, but it was exacerbating the problem, not causing it. Moreover, once it was controlled, things started sliding downhill again. Then I thought it was the damage I suffered as an undiagnosed celiac. And again, I’m sure that was a factor. Being sick and chronically malnourished will drain your energy and make life difficult. But it’s been seven years, I’m pretty much healed, and celiac disease is no longer a significant factor.

Yet I’m still hanging on by my fingernails. By the time I do the things I have to do each day, I’m so exhausted I’m asleep almost as soon as my head hits the pillow. (Staying asleep is another matter, altogether, but that’s not the point of this post.) I’m hardly managing anything more than the minimum I need to do to get by and even that’s a struggle most days. I’m so deeply tired down to my bones that even the thought of that next thing I need to do often fills me with dread.

Objectively, while crises still arise as they do for all of us, my life is actually calmer now than it ever has been in the past. It’s not like things have gotten harder and it’s taxing my ability to cope. Things have gotten easier. I’ve gotten healthier. And simply living life has gotten harder for me. Each day is a hill and the hills keep getting steeper with no respite and no end in sight.

I don’t know why simply being has gotten so much harder than it once was. But if I had a magic wand, that’s where I would apply it. Unfortunately, no such wand exists, so I’m left looking for more mundane responses. My tendency, of course, is to simply push through. I have a relentless will and I can and have pushed myself when I thought I had nothing left. The problem, of course, is that the well is finite. At a certain point, I can’t just bull through anymore. And I feel like I’m reaching a place where something has to give.

I have no answers, but I did come up with a response to the question and, I think, a revealing response. I pretty much have the life I want if I could actually live it rather than just survive it.

Who’s “In” and Who’s “Out” in the Autistic Community?

There’s an ongoing “discussion” in the online community of autistic people about whether or not those who are only “self-diagnosed” (meaning they haven’t been able to obtain formal assessment, at least at the current point in time) should be included. It’s often expressed as a question about whether or not self-diagnosis is “valid”. Personally, I dislike the language of validity applied to an individual’s identity. We are all “valid” human beings. I’m also more confused by the fight itself than an active partisan for either “side” in the debate. I can’t discern why it seems to matter so much to some people.

VisualVox, the Aspie Under Your Radar, wrote a post on the issue and I left a rather lengthy comment. Upon reflection, I decided I might as well turn that comment into a post of my own. You probably will want to read her thoughts as well, since in places I do reference them.

I’m pretty sure everyone agrees that if you’re going to seek any sort of official support, accommodation, or anything else from the larger NT world for your autistic needs, you’re going to need the official paperwork to support your request. That’s just common sense. I’ll note, though, that it’s possible to negotiate unofficial accommodation. Looking back, I did that for decades at work as an undiagnosed autistic. I would frame it in terms of whether or not something in my environment was interfering with my ability to produce at an extremely high level and ask to have it adjusted. Since the people I worked for always thought it was in their own self-interest for me to keep doing what I was doing, even if they didn’t understand it, they were generally happy to accommodate my ‘quirks’.

But nobody with a ‘self-diagnosis’ is going to be looking for any official accommodation, anyway, since they will obviously know the above. In most cases, my assumption would be that they are trying to understand why they struggle in certain ways and contexts and why they appear to interact with the world around them differently from most other people. And they may be looking for ways to ease or at least better manage their struggles. In order to do so, they are reaching out to the online community because, honestly, where else could any of us have turned? I certainly didn’t have any other ready avenue for learning ways to cope with aspects of being autistic even once I was formally diagnosed. And I needed the information from those online sources to even confirm in my own mind that I needed to seek an assessment.

So I understand what at least most people with a self-diagnosis are doing and it strikes me as perfectly reasonable. Where else are they going to turn if not to the online community? And given the barriers to assessment and diagnosis in different parts of the world and the high bar gender, race, class, and finances can create even in locations where assessment may be available, official diagnosis may not be an option even for people who want it. And honestly, it’s hard for me to imagine that there are many people who wouldn’t want some sort of official validation and confirmation if they could obtain it. I know I was going back and forth in my own mind beforehand. Even on the drive to discuss the results, I was trying to work out what I would do if she told me I wasn’t autistic. And I masked so well (automatically and unconsciously) even during the assessment process that if neurological results (such as the 30 point split in my two core “intelligence” scores) and childhood history (such as constant spinning and pacing and complete meltdowns eventually requiring psychiatric intervention when anything at all in my room had been moved) hadn’t clearly shown autism, I might have ended up with the new social communication disorder diagnosis instead. Since then, I’ve been able to peel back the masking and coping behaviors and find a lot more evidence for the Section B criteria.

So, given all that, I’ve been bemused by the vehement reactions in some corners of the online autistic community against those who are working from their own self-diagnosis. I can’t see any way those who are operating from a self-diagnosis are harming, threatening, or taking anything from those of us with official diagnoses. The online community is an unofficial place to provide and receive information, advice, and support. If someone needs or can provide that, it’s the appropriate place to be. Nobody’s personal story is invalid and it’s impossible to know who will be helped by it if you choose to share it. And in many ways, a self diagnosis is exactly that. It’s a personal story marking their current place in their journey. Honestly, an official diagnosis doesn’t really change that fact. Ultimately, I only have my story to share. Some people may find it helpful. Others won’t. And that’s okay. We aren’t all cut from the same cookie cutter mold.

CDHD (compassion deficit hyperactivity disorder) is a funny way to capture some of the reaction against self-diagnosed individuals. And a lack of compassion may be a part of it. Honestly, I don’t understand the fight response I’ve witnessed. In some cases, it seems that a person may have encountered some people online in the past who claimed an autistic self-diagnosis and were also jerks. I can see how they might end up lumping everyone with a self-diagnosis into the same pot if it happened multiple times or was particularly painful. Of course, there’s no real relationship between the two. All sorts of people in every category can be jerks. Heck, even otherwise helpful and generally nice people can have a bad day and come across as a jerk or even actually be a jerk. (Usually, if you aren’t a thoroughgoing jerk, you’ll recognize your jerkiness later and apologize for it.)

Other than that, though, I’ve been unable to discern what’s triggering the fight reflex for some people. Someone who has assessed themselves may be mistaken; our own lens is hardly free of bias and distortion. But that fact doesn’t harm or threaten me. Moreover, I have no way of knowing whether or not someone has been officially diagnosed unless they choose to share that information. It’s an unreliable mechanism for determining who you will read or interact with. The better gauge, and the one I’ve used in all situations, is simply assessing what they have to say and how they choose to say it. If I find it interesting or helpful, then it’s interesting or helpful. If I don’t find it interesting or helpful, I’ll look elsewhere. But that doesn’t mean that someone else might not find interacting with them helpful. If they are abusive, I will screen them out. I’ve been abused enough in my life. I don’t need to let abusive people in at this point and I’m much better at managing that aspect today than I used to be.

But nothing in that process has any connection whatsoever to the official state of someone’s assessment and diagnosis. I’ve been trying to puzzle out the underlying issue. It just seems like such a strange thing to fight about.