After discovering that I’m on the Asperger’s/autism spectrum, I’ve had to plunge into a new world. Well, maybe I didn’t have to, per se, but after a eureka moment as game-changing as that, I can’t imagine how I wouldn’t/couldn’t have.
Making (stumbling upon, quite accidentally) this discovery later in life means that I’ve had to reflect on my life, straining to make out its specks in the rearview mirror, and reframe it in a way that I had no idea applied to me.
Making this discovery in mid-life also means that I’ve lived a significant portion (current life expectancy estimates indicate about half) of my life without any autism spectrum-specific support. I didn’t even know that I needed support. Maybe I did know, on some ethereal subconscious level, but rashly dismissed it. Because when one is under the impression that they’re “just like everybody else”, they don’t tend to entertain the thought that they might need extra help. Instead, they tend to scold themselves for their mistakes and “try harder” to overcome their weaknesses. After all, “everybody has problems”, right? And they seem to survive and function in the world.
I didn’t entertain the idea of seeking support because I had no idea that it would’ve been a legitimate pursuit. What made me special? Why would I have been any more deserving of extra support than anyone else? Why should I even need it? I was a “functional” full-fledged adult, right? Even though I struggled, I put any thought of asking for deadline extensions, alternative testing/exam formats, or alternative assignments, etc, out of my mind before they had even entered said mind. I figured I just needed to “suck it up” and “deal with it” and “do better next time”.
And maybe, if I tried hard enough and kept trying, that one of these days, I would “finally learn”. Finally learn to complete those school assignments on time. Finally learn how to absorb information written on a page without pictures. Finally learn how to make phone calls. Finally learn how to make friends. Finally learn how to take charge of household tasks….or maybe just get the dishes done.
In what are probably rotting remnants of internalized ableism, Authoritarian “Driven” Me lectures the rest of me that “being an Aspie is not an excuse not to carry out the basic functions of being an adult. You don’t get to stop working, stop contributing to your household (financially or otherwise, such as household chores), or shirk any other responsibilities. You don’t get to just shed your clientele and submerge yourself in art and writing because it’s more fun. You may be autistic, but you’re still a married, business-owning, professional license-holding adult.”
Authoritarian Driven Me is a bitch, ain’t she?
of course I think. I did all of those things before, and I won’t stop doing them now. Just because I received a diagnosis doesn’t mean that I’ll quit my job or run away to the beach (as much as I might like to!). But what she needs to understand is that although I did those things before, the question is: at what cost? Sure, I haphazardly mimicked the life of a “normal” non-spectrum person and measured myself harshly against neurotypical yardsticks and standards. But what did that cost me in the process?
And there’s always a cost.
It took a while for my costs to accumulate and catch up with me, but by the time I was established in my fourth decade, the effects of my unsupported efforts began to mount until they cracked my cool exterior surface and bubbled through. I can’t determine whether or not my–what–three?–autoimmune disorders, my development of hemochromatosis, the worsening of my strongly-suspected EDS, the cumulative portion of my dual-type PTSD, and roughly 25 years of on-again, off-again depression could ever be associated with the lifelong stress of those unsupported efforts to live up to “normal” standards and rules, but it’s certainly on the Table of Possibilities.
There is good news in all of this. (Well, OK–maybe not “good”, per se–so much damage has already been done–but at least it’s “better” than it was, and I’ll certainly settle for that.)
In the nine months that have passed since I first realized I was on the Asperger’s/autism spectrum, I have done three things, intensely and repeatedly:
- I’ve researched the hell out of this subject and related topics (even though I’m not done yet and I’m not sure I ever will be),
- I’ve shared the most relevant tidbits of information with my partner, with whom I both live and work, by emailing him links to blog posts and articles, and I’ve also made sure to follow those emailed links up with an in-person discussion, for the sake of communication and accountability, and
- I have connected the dots for my partner between the information I’ve learned and shared, and how it applies to us in terms of what I need, and as difficult as it can sometimes be to identify and express/explain what I need, I have consistently tried my best to do so.
The people with whom we spend the most time can either be supportive allies or adversarial agents. That concept also applies to our activities, occupations, and other elements of our daily lives. Our lives can be engineered for us or against us, and so can the people in them. And the more significant a role these people and elements play in our lives, the more impactful they become, for better or worse.
I’ve attempted (and mostly succeeded) to help the people in my inner circle become my supports. I’ve also sought out other forms of support on my own.
My partner is probably the most influential person in my life, because he is the person with whom I spend the most time. Since we live and work together, having him on board, on the same page, and on my side is doubly important. He has evolved and transformed into a major source of support. He makes all the phone calls, fights the battles, stands up for me, stands in for me in difficult conversations, administers much of the household, and essentially takes over any task involving interacting with anyone outside my inner circle. He also does the cooking (I’m clumsy), most of the cleaning (I have allergies), and fixes all of my technological mishaps (technology hates me).
My friends are also increasingly supportive. Their awareness and knowledge base lag slightly behind my partner’s (simply because of the differing amounts of time I spend with each), but they’re very open, willing, and accommodating. They either drive me places or they navigate for me while I do the driving. They’re very accepting and sympathetic to my anxiety and quirks. They suggest low-key activities in serene environments.
My staff/coworkers are also very supportive and accommodating. They roll with my idiosyncrasies, oblige my schedule guidelines, don’t think twice about my frequent need to go off and be by myself, and communicate with me by email. They’re sure to ask me before making any changes or making a scheduling exception for a patient. Most importantly, they refrain from judging me for my non-neurotypical characteristics, behaviors, and communication styles.
My counselors and therapists have been of varying and sometimes limited benefit. I’m not saying they’re good or bad, but they can be a mixed bag, and the level of success reached can be hit or miss. In order for me to benefit from their guidance, they either have to be fairly educated/familiar with the more current/progressive bands of thinking toward the Asperger’s/autism spectrum, or they have to be incredibly insightful/intuitive and talented professionals who can render versatile and constructive advice. I’m deeply considering–and tentatively planning–an arrangement with the specialist who performed my professional evaluation and formal diagnosis; he also offers ongoing counseling/coaching support.
Facebook was my first social media-based avenue of support. I joined several “closed” (but not secret) Facebook groups for Aspies/autistic people. These can be extremely beneficial, although their effects can be mixed as well. On one hand, many groups are open ONLY to people on the spectrum, whereas others are more permissive of neurotypical membership. Some are moderated very well, whereas others are not. Some of the moderators are more logical/stable/responsible/attentive, and others are less logical/mature and may not be as “on top of things”. Some groups have more members than others and several membership elements (like participation, responsiveness, quality of discussion, constructiveness, etc) varies widely. I recommend Facebook overall; my experience has been positive, and although there are a few immature/irrational people on there, they’re relatively few and far between, as long as you join the right group(s), the quality of which depends ultimately on that of its moderators (because they ultimately decide which members to accept/reject, they set the tone and rules for the group, and they sometimes have to play “referee” if a disagreement heats up. I find my Aspie-related Facebook friends and groups to be an intelligent and earthy lot, with a lot of diversity/variation and open-mindedness.
My neurosiblings on Twitter have been utterly amazing. They’ve stood by my side, minute by minute and day by day, as I’ve gone through the rollercoaster of highs and lows of life. Twitter has been the most active social media outlet, and I’ve been able to connect with more people (by far) more often (also by far) and more deeply (“by far” on that, too). Most (but not all) peoples’ tweets are public, which makes for a very open platform, although this can be a double-edged sword. There is a certain amount of trolling, bullying, and harassment, and although that hasn’t been a major problem for me, it has been for several others. Overall, I do recommend Twitter, although it quite fast-paced and intertwined, and it can take some time to get used to, until which it can be relatively confusing. It’s important to know that Twitter is somewhat of a Wild West of social media, in that there are no moderators, no closed groups that I know of, and very few avenues in which to address grievances. But I recommend it because of the (innocent) love-fest of neurosiblings that I interact and bond with every single day, almost in real-time. Their support, immediate feedback, and personal viewpoints/experiences have proven extremely valuable.
My fellow WordPress community has also been quite incredible. Although there is no “chat” function or other real-time communication that I’m aware of, the blog posts and their comments sections offer an excellent venue to air and express longer, deeper thoughts and form some very nice bonds with fellow bloggers/members. For obvious reasons, WordPress is blog-writer-heavy relative to non-writers, which skews the population somewhat, but it, too, tends more toward maturity and logic. My fellow WordPress peeps have been a huge source of support from day one, between their blogs that comforted me and eventually inspired me to start my own, and also in their “likes” and comments on my posts, offering their kind words and personal perspectives.
Last but not least…my cats have been a huge source of support! I love to come home to my cats wagging their tails and running their mouths and purring their arses off. They look up at me with eager eyes, grateful and happy to see me. They calm me efficiently after a stressful day, just by being themselves, sitting beside me and purring or “talking” to me. (And they do “talk”!) They snuggle up to my chest or my feet, and I can immediately feel their warmth and the vibration of their purring. They reduce my blood pressure, lift (some types of) depression, and boost oxytocin levels. They shove their faces and heads into my hand and let me know in no uncertain terms that I am loved and wanted. ❤
(Image Credit: Cyril Rolando)