I’m at a sort of turning point in my life for the time being; where I finally really take ownership of asperger’s syndrome*. Like say “I have Asperger’s Syndrome” to my family, for example (so far the only example).
It may be a surprise that it is even a turning point. It is several years ago since I discovered aspergers syndrome and I have spent probably thousands of hours researching, watching videos and interacting online in relation to aspects of it, immersed in a sense-making process akin to what Cynthia outlines in her series “I Think I Might Be Autistic“*:
THE SENSEMAKING PROCESS
- Shift in identity – identification as aspie/autistic
- Retrospection – looking back at key life events in the context of this new identity
- Building narrative accounts – retelling the story of your life in light of AS/autism
- Sharing your narratives – strengthening and preserving your stories by sharing them with others
- Reflecting – the ongoing process of receiving feedback on your stories and reshaping them as your understanding of your narrative changes
Cynthia’s list resonates well with me, but not in that order. In my case, step 1 is the last and hardest step. That is because “identification as aspie/autistic” is not just about what I am, it also represents a collective identity. The disadvantage of my extensive research of first hand accounts like blogs and forums is that I’m acutely aware that a lot of different people already own Aspergers/autism… define it and represent it. That makes me feel awkward, like standing too close to a group.
The community aspect – to claim a collective identity, a belonging – seems like the big drawing card for many who want an ASD diagnosis (and I mean want it badly). The diagnosis, given (or withheld) by medical authorities outside of the aspie culture, serves as a vital cultural badge for people within in it; a sort of tribe emblem. I don’t really like that; it seems like an unhealthy foundation for a subculture to base inclusion on a medical diagnosis for a disorder.
I guess that in some way it does the belonging-trick for me too; it assures me that I’m a kind of normal, just not the normal kind of normal. Yet for me the collective identity is also the most awkward aspect. It stands for a territory already crowded with other people, teeming with agendas and people politics.
Rented rooms & video games
The sensemaking narrative I’ve told myself about discovering Asperger’s Syndrome was that I came across it online while searching for information about noise sensitivity. That is true, but then it occurred to me a while ago that I came across it much earlier first.
I first noticed there was something terrifyingly personally relevant about aspergers about 10 years ago, so that was in the pre-Internet era. I worked in a casual cleaning role on a school that had a special ed class for kids with Aspergers which was in my cleaning domain, and I was meticulously instructed about how to go about cleaning that one classroom.
First of all, the staff said, don’t move anything to a different place … not even a pen… since the kids will notice any change and may freak out. And don’t clean if any of the kids are in there, they don’t like strangers.
The kids’ desks were all wall-facing with wooden dividers between them to ensure a distraction free environment for each kid (think Vulcan primary school, just low tech). Each “study stall” was equipped with a short row of picture cards to provide a step-by-step overview for each kid about what to do during the day. A girl roamed the common room between the classrooms and pestered the normal kids out there with odd repetitive questions; they mainly ignored her. I felt empathetic; something about her fundamental situation stroke a note with me.
One of the teachers came over to me outside, having a cigarette break, and talked about the kids. I liked him. He said that they provided the kids with stability & structure and taught them life skills so they wouldn’t end up in institutions. The sad truth, he said, was that many of them would grow up to an adulthood in unstructured isolation, with no friends, living of coke and burgers in small rented rooms doing nothing but playing computer games by themselves all days.
I felt a rush of embarrassment as my own isolated youth in small rented rooms flashed up in my memory. For a few seconds, I scrambled frantically inside myself trying to ensure that I did not look like such a miserable adult with failed social skills. Then I remembered that he didn’t know anything about me and felt almost relieved.
I meticulously disassembled my suspicion with Reason. The two facts I thought I knew about Aspergers Syndrome was that persons with Aspergers had no friends and no imagination. While I did have the friends issue, I’ve always had a super powerful imagination.
I also reasoned that I didn’t play computer games – I didn’t even like them. I didn’t drink coke or ate burgers either. I also wasn’t in a special class in school when I was a kid, and didn’t freak out if a pen was moved around. So clearly, I was not like their kind at all. Relieved, I let go of the scare and didn’t remember the little episode again until fairly recently.
Then a few years ago, I ran into the Aspergers Syndrome again during online search for information about noise sensitivity which kept landing me inside forums and blogs for and by persons with Asperger’s Syndrome – this time the adult version.
I noticed that I had a lot more than social difficulties and noise sensitivity in common with aspies. A chain reaction of “aha moments” rolled out as I could suddenly mirror myself in others experiences and see aspects of myself I had thought were too unique and weird for words. My sensory vocabulary grew, and I found ways to express how I perceive the surroundings; current and past nameless experiences for which I had thought there could be no language, neither to clearly define my perceptions in my thoughts, nor for communicating them to others.
That was the start of my sensemaking process which took place over several years and is in a sense ongoing.
In 2011, I started seeing a specialist psychologist in a clinic specialising in Aspergers, for psychological counselling. I didn’t think I necessarily had full-on aspergers as such (or maybe I did but wasn’t ready to admit it), but I reasoned that an ASD specialist would be more likely to understand and include my issues with noise sensitivity and other severe aspie-like issues which may not look strictly psychological but are part of my situation. My stated objective was to clarify and try to solve my problems with employment.
Eventually the question about whether I *really* have aspergers began to grow increasingly important though until I was speculating about it all the time: do I meet the criteria or not? I was not in doubt that I have many traits and that my mind fundamentally operates in an aspie-like way, but I wasn’t sure if I as such met the official criteria**.
This was long after he’d done the Australian test for aspergers in adults with me (a questionnaire undertaken during a session) and showed me that I was solidly over the threshold (119 points, where the threshold is 65), and after we had been working on my core issues like executive dysfunction, sensory overload, social difficulties for more than a year… all the relevant aspects of aspergers, just without mentioning the A-word.
When I finally asked, I got a prompt and very sincere Yes “no doubt about that at all”. It has later been followed up with an official document, which I admit was necessary to close the case in my mind. It had a strong symbolic impact; like a document of ownership of Aspergers that says “this is what you are and you can’t escape, now deal with it”. Accepting that ownership is a relief. It finally halted the endless speculative loop of relentlessly categorisation and re-categorisation of behaviours that I was caught in for a very long time. So That’s It.
Beyond sensemaking: disclosure
The sensemaking process Cynthia outlined focuses on taking ownership of the condition in an introspective way and sharing the journey with like-minded people who can help provide support, insight and companionship. It is primarily an inside-out process – making sense of what’s inside oneself.
Beyond that journey lies a new sense-making process; the disclosure phase. That involves an outside-in process where close family members, friends and perhaps a partner become aware of and make sense of the diagnosis in their own, uncontrollable and perhaps unpredictable ways.
Part of that process is to figure out who to tell and how to effectively communicate it to persons who doesn’t have any advance knowledge of autism but may be influenced by myths and stereotypes from popular media.
The process may look like this:
THE DISCLOSURE PROCESS
- Complete the personal sensemaking process and become ready to disclose
- Decide who to tell
- Decide how to tell it
- Prepare supporting information and support from network, if available
- Decide when to tell it and arrange a meeting
- Wait for and support their process of understanding & acceptance; answer questions and follow up with more information if required
That is where I’m at. During the last few months I have told my closest family members that I have Aspergers. It was important for me to do it because it has a strong explanatory power in relation to my unusually troubled history. I feel they deserve to know and I really badly want them to understand me, and now it seems like there’s a chance. My next post is about how I went about the process of disclosure, and what the reactions were.
* So it is now officially named Autism Spectrum Disorder, but I’ll use aspergers unofficially here on my blog and definitely use it for explaining it to people who are not into the peculiarities of diagnosing autism.