Easier to read, I think.
Easier to read, I think.
Since February, 1998, I’ve been taking Aspie quizzes, autistic assessments, checking where I am on the autism spectrum on an occasional basis. To be honest, I haven’t always really “inhabited” my Aspie identity the way I do now. For me, it was more important to just be as functional as possible and also think outside the boxes that people seemed to love to put around folks on the autism spectrum.
I appreciate all the effort and time and energy that’s gone into research over the years, but all too often, they just get it wrong. That’s the problem with neurotypical people taking the lead on autism research. And what a theater-of-the-absurd situation it is, in my not-so-humble opinion.
In 2008, I decided once and for all to just BE an Aspie. Of course, that didn’t work out as well as I’d hoped – I got a lot of push-back from people who just couldn’t fathom that I was on the spectrum – and they seemed to think it was a horrible thing. A fate worse than death. Well, possibly… if you have to be surrounded by people who think so, all the time.
I left a lot of those folks behind – or I just quit talking about being autistic with them. They didn’t get it. It was a waste of everyone’s time. And it was very debilitating for me, as well.
I still enjoy taking Aspie quizzes and autism assessments. It’s fun to be reminded, yet again, that somebody recognizes the unique constellation of qualities and traits that make me magically who I am.
But I haven’t been very happy with a lot of the tests, because they are either too skewed towards stereotypical traits of 7-year-old white males from an upper-middle-class context, or they aren’t complete enough. They talk about the issues in very simplistic terms — Yes/No/Not Applicable, or Never/Sometimes/Often/Always/Don’t Know — without addressing the degree to which those traits affect us.
That’s the bit that interests me. Not just if something is present in my life, but what role it plays — does it make me “better” or “worse” at living my life? Does it help me along, or does it hinder me? Is it a mitigating, adaptive behavior (like stimming) that helps moderate my overactive sensory issues, or is it something (like having balance and coordination problems) that keeps me from living my life?
These are the questions that concern me now — and the degree to which all these things exhibit themselves from day to day is a huge piece of it. Because it’s all a spectrum. It’s all variations on the autistic theme. And the variations can mean the difference between an OK day and a really great day, between an OK day and a total nightmare.
So, that’s where I am now. Looking at degrees — and how those degrees affect me. The bubble chart above shows where I’m at today, at this point in the day. It shows the prevalence and intensity of the issues I’m dealing with, which gives me a point of reference to more visually understand my situation.
It’s a picture. And it makes sense to me. I think I need to lighten the background a bit, but that’s the general idea. I’ll be refining this as I go on, so I have an online program that I can just type my levels into, and then generate a nice bubble chart to use. It’s not perfect (yet), but it feels like a very strong start to me.
Ultimately, I think we need more tools for autistic self-management. I mean, “autistic” means basically withdrawing into yourself — we totally know how to do that, and we need tools that leverage that very central aspect of ourselves. And the tools need to be online, as well as accessible via computer (spreadsheets, worksheets, etc). Because that’s something that a lot of autistic/Aspie people can access and feel comfortable with.
Considering how hard it can be to get help — especially when official diagnosis is out of reach financially — we need all the tools we can get for self-care and self-management. The disconnects between Aspie/autistic reality and what’s available in terms of services are gaping and, well, surprising… considering how many of us are articulate and well aware of what our situation is really like, as well as very much in need of help. So, this is a step towards self-affirmation, self-management, self-empowerment for folks on the autistic spectrum who want to take responsibility for their own well-being and quality of life.
I’ve got what I think is a pretty cool display for my Aspergers-Autism Assessment tool. This is the “first cut”, showing just the display that I have in mind.
It “chunks” the different sets of issues into four distinct categories:
I’m sure I’ll be refining as I go on, but at least I have a display that works for me.
I’ve been taking Asperger’s / Autism assessments since February, 1998. I’ve taken just about every one I could find, though I’m sure there are more out there.
One thing that really bothers me is how they seem to be skewed towards the stereotypical traits of Caucasian males, especially younger ones. I understand the ADOS diagnostic tool seems very “child-oriented” as well. So, in addition to not yet having access to an official diagnosis, the diagnostic tools I’ve heard about don’t actually seem to include me.
Heck, precious few of the diagnostic criteria include those of us who don’t fit neatly into those narrow definitions — despite us being well and truly on the autistic spectrum.
I use diagnostic tools / assessments not just to put my mind at ease about “Am I really an Aspie?” but also to manage my issues. I like to see where I am, on any given day. Seeing as folks on the autistic spectrum can be variable, from day to day, it strikes me as a little self-defeating to rely on a single test to “do the trick” and say yea or nay on whether you’re on the spectrum. It also seems self-defeating to use it one time and one time only.
The most benefit comes from looking at daily issues — so they can be managed.
I’m talking about having tools that help us assess where we are and then manage our issues.
And I don’t see a lot of them out there.
So, I am building some, myself.
In the works:
A quick online visualizer to show you where you’re “at” with regard to certain core issues, to help you better understand them — and also help communicate to others.
#1 was started first.
#2 is actually nearly done. Less work, more fun. More motivating.
Watch this space – more to come.
This is a great description of what it’s like. I’m not a parent, but I am a caregiver, and I have completely lost it several times on my hapless dependent, when the last thing they needed was for me to melt down. I think the lessons of autistic parents can come in hand for us caregivers – especially if we’re dealing with cognitively impaired dependents — including our parents in later years. Women disproportionately fill the ranks of late-in-life caregivers, and many of us are on the autism spectrum. I smell trouble brewing, if we can’t figure something out…
Okay, getting off my soapbox now.
In my house, we are all autistic and we all have meltdowns. This post is going to be about a meltdown of mine, I may write about the children later. It was one of the worst I have had in a long time. Post autism diagnosis, I am in a much better position to be able to analyse what happened and figure out how to avoid another in the future.
Prior to meltdown
After a month or so of no help with childcare, I had a terrible day yesterday. I was unexpectedly told to attend a meeting, with lots of new people. The children had to go to a new and unfamiliar place so they were nervous, excited and boisterous. There was lots of play fighting, which inevitably turned into real fighting. I rarely take both children out on my own. I was very stressed.
Morning of meltdown
I woke up…
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So, so good – it’s a great comparison of before-awareness and afterwards. Everyone questioning why autistic people need to know what the deal is with us should read this. The payoffs of putting it all together are exponentially greater than any drawbacks — and it’s amazing how finding things out can smooth over years and years of self-doubt, blame, and recrimination.
Knowing you’re on the autism spectrum is liberating, not disordering.
My husband always says you can find me in the logic. My actions are always reasoned. There’s always a clear pattern to follow.
What that meant, before I knew I was autistic, was that all of my logical conclusions about who I am were deeply flawed. That I misjudged and misconstrued both my own motivations, and other people’s.
Here are some examples of some vastly different thought patterns from before and after diagnosis:
Why do people not warm to me?
PRE: Because I’m not likeable. Because I’m not interesting. Because people just don’t like me.
POST: Because I can’t do the unconscious processing behind social interactions. I won’t be projecting things in a natural way, and I won’t pick up on the subtle nuances of other people’s movements. This leads to people thinking I’m closed to them because that’s what I’m projecting.
Why do I find it so…
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This is so, so great
JUNE 27, 2016 BY ROBERT CHAPMANAt around the age of 6, I was utterly fascinated by the stickers that came attached to pieces of fruit. When at the shop with my mother, I would rush over to the fruit section and gaze, riveted, at all the fruits that we rarely or never bought—basically anything except apples, bananas, and oranges—until it was time to leave. For those fruits we did buy, the stickers would be duly plucked, arranged, and pasted in a precious little book that I either carried around the house or kept hidden under my bed.
In addition to such idiosyncratic interests—and I had many others, over the years—I was also odd when it came to socializing. I didn’t join in with many of the shared games other children played, and even if I tried to, I never seemed to understand the things they grasped intuitively. I was a happy child—my fruit sticker collection was an endless source of fulfillment—but to others, I always seemed a bit eccentric. Teachers often indicated that I must have had bad parents, that I was lacking intelligence, or that I simply didn’t care. Fellow students tended to shun me, or sometimes ridicule me.
I later learned, however, that I wasn’t indifferent, stupid, or even merely weird. I had a “disorder.” The psychiatrists’ diagnostic bible, the DSM, had recently given my behaviors an official designation: “Asperger’s Disorder,” which was in the DSM from 1994 until it was rebranded mild “Autism Spectrum Disorder” in 2013. Pursuits like my fruit sticker collection fell under the category of “restricted interests,” one of the major diagnostic criteria, and the other—”qualitative impairment in social interaction”—explained my loner nature. Based on these traits, I and thousands of other children in the 1990s and 2000s were deemed to have Asperger’s.
Read the rest of this great article at http://www.theestablishment.co/2016/06/27/autism-isnt-just-a-medical-diagnosis-its-a-political-identity/
This is a good read from http://www.jamesmw.com/sixrules.htm
ABSTRACT: Autistic individuals typically have problems interacting in normal social environments. This leads some parents and professionals to think that they are naturally antisocial. However, autistic individuals, if allowed to interact with other autistic individuals, develop complex friendships that are based on social rules that are unique to autistic relationships. These social rules are not necessarily the social rules of neurotypical individuals. In this essay, I discuss general principles that autistic individuals use when they interact with each other, and how this helps their relationships prosper.
* * * *
[Author’s note: The following rules have been read and verified by other autistic individuals.]
There is a basis for the conclusion that autistic individuals are naturally antisocial. Most autistic children do not do well in social situations and prefer to be alone. Some consciously refuse to follow social rules for they fail to see the point of them. Other autistic individuals who do attempt to attain social acceptance may be unable to understand the rules of the majority and hence find themselves despised and rejected.
The underlying cause of autistic social problems is not that autistic people are inherently antisocial. It is that they are social in their own way. But this way is not the normal way, and thus they are perceived to be weird by many neurotypical people.
When two autistic people who are fit for each other interact, there typically are several principles they use when socializing. These may seem alien to you, but remember, many of your values are alien to us even when we learn them.
The word “fit” is key, however. Not all autistic people can find common interests or share worldviews with all other autistics. Some are incompatible. But remember, many neurotypical people have incompatibilities with other neurotypicals.
Read the full article at http://www.jamesmw.com/sixrules.htm
One of my special interests is analyzing my DNA. I’m a GEDMatch junkie, compulsively running my numbers on a regular basis, then looking up the 200+ cultural influences that have helped make me what I am.
My family has always been interested in genealogy, especially my grandfather, who worked with a bunch of his cousins to compile as complete a genealogy of their family as they could, back to the earliest ancestor they could reliably identify. The book sits on the “Ancestry” section of my 5th bookshelf. It strikes me that the task is considerably easier if you’ve got a bunch of Aspie traits… all that work, all that focus, attention to detail… not just anybody can do that. There’s a reason why I never thought of myself as particularly weird when I was around my family — because we ALL were/are!
Someone asked me a few weeks ago why I’m so interested in my genetic history. They seemed befuddled by my exuberance about it… talking about my distant ancestors, like they were aunts and uncles I met with regularly. Why should it matter to me? they wanted to know. Isn’t being here, now, enough? Personally, I couldn’t fathom how they couldn’t be fascinated by their past, especially considering that they’re a refugee from their home country. Wouldn’t they want some connection with their past?
It seemed like they didn’t. It seemed like they just wanted to move on. And I had to really think about why I care as much as I do about my bloodline. I have no children. I’m on good terms with my biological family, but I don’t feel a strong sense of connectedness with them or their family traditions and ways. My grandfather passed away several years ago, so apparently only I — the only one in my family with no kids — is actually intensely interested in this “stuff”. Why does it matter so much to me?
Well, I’m not the only one. Every now and then, I’ll come across someone who’s as fascinated by history and cultural legacy as I am. One of my staunchest comrades in this regard was a guy I’ll call N, who I worked side-by-side with (literally) for a number of years at a pretty cool job. We were both fascinated by our European cultural legacy — I by my German, Italian, Swiss, French roots, and N by his Irish/Celtic roots. We compared a lot of notes over the years, and we’ve kept in touch, probably because that was such a strong connection we shared with each other — and with just about nobody else.
Thinking about our shared deep interests in genealogy and cultural heritage, I am struck by the ways in which we were both so similar, and yet so different. The same kinds of things drew us to connecting with our histories – however distant – and not until I sat down and thought about it, did it start to make sense.
Both of us had been rejected by our parents. Both of us had been erased from our legacies — not once by several times, not completely, but in a hundred different symbolic ways.
You see, N was one of the former altar boys who had been abused by Catholic priests, so many years ago. He was one of the claimants who received a monetary settlement from the Catholic Church. He was one of the ones who was never believed as a boy, whose parents punished him for saying — even suggesting — that a priest would do such a thing. His father never forgave him for saying anything, let alone suing the Church. His life was an ongoing struggle for dignity and self-affirmation (not to mention trips to doctors for his entire life to manage the diseases the priests passed on to him).
As for me, I was in a different spot. I had chosen my separate path by myself. It was never foisted on me by a sick, twisted adult and then erased by denial and violence. I had simply chosen to live my life in a way that my parents could not accept. For years. Nor could they speak about me to others, because of the shame… and also the danger.
You see, my father was a founder of a struggling non-profit and the entire family was 95% dependent on my mother’s income as a public school teacher to survive. It was bad enough that I had married a man my parents didn’t approve of, and then divorced — my mother could not discuss my very existence in her own church and community, because of the shame and disgrace about my life choices. But when I came out as a lesbian, I wasn’t just threatening my own soul. I was threatening the well-being of my whole family.
My mother didn’t dare admit that I even existed to other people — not as I was. She could not introduce me in public to friends she ran into when she and I went out shopping during holiday gatherings. I’d stand off to the side, quietly waiting for her to finish talking, taking the cue from her turned back and her voice suddenly getting high and loud, that I needed to make myself scarce. If I was there, she’d have to admit that she had a lesbian daughter (who didn’t look very feminine, on top of it). And as a public school teacher, that put her job at risk. If she couldn’t be trusted as a mother to raise a heterosexual, straight-looking daughter, “What would she do to her students?!”
My presence put everything at risk. For her. For my family. For my parents’ retirement. For their safe and healthy future.
My parents’ refrigerator was always covered, top to bottom, with pictures of the kids and grandkids, friends, and other relatives. But not me. Not my partner. There was no sign of us in the photos, even though my mother always took a lot of pictures of us, when we got together. My partner and I were invisible. We didn’t even show up separate, in photos on different quadrants of the fridge. And even when we came to visit, there was never an attempt to change around the pictures to make us feel welcome. Or wanted.
My elderly relatives, who had always loved me so much, turned their back on me, when I demanded they acknowledge my long-time partner’s existence. After 20+ years together, great-aunts who had once been my favorite aunts, refused to acknowledge my legally married wife, and one of them literally turned her back on me at a family gathering and never said another word to me. I was told in no uncertain terms to not contact people who had once meant so much to me. Not after I’d left the only acceptable way of life they were convinced I should follow.
Family aside, I am out of place in general. And the subtle erasures happen constantly. The hetero-normative assumptions about what should and should not matter to me. The assumptions that my wedding ring means I’m married to a man. The assumptions that, as a female, I would want to wear dresses and behave like other women. My gender differences have been glossed over / erased, since I was a kid, surrounded by pink things, girls’ toys, forced segregation putting me in an oversized dollhouse to make tea and arrange pink household replica toys, while the boys all ran and played. I left my mark as who I really felt I was, as a kid — I took my Mom’s Magic Marker and penned my real name — Billy — on the wooden frame of the family bulletin board. It’s still there. Indelible ink. It was the one way I had to say, Nobody could erase Billy — the identity I wanted to live back then. Not ever.
Billy’s long since gone… dissipated into the ethers and integrated into the core of my being in myriad small yet pronounced ways. But the erasure continues… with subtle hints that maybe I really am interested in feminine things and pastimes, I’m just repressed and feeling pressure from the lesbian milieu I travel in. Because what woman wouldn’t want all those things — pretty dresses, nice shoes, jewelry, a hairstyle (not just a haircut)? What woman indeed? I must just be emotionally stunted or somesuch. How can you defend against that never-ending stream of pressure that masquerades as “gentle suggestion”? They mean well. I’m sure they do. They want me to have the kind of happiness they have. They just don’t realize they’ve erased a little more of me, with their assumptions, and I haven’t got the energy (or inclination) to restore that picture of me that may or may not make a bit of difference in their minds.
I have precious little space in the immediate world that actually appeals to me as it is. I must always modify it, edit it, tone it down, or amp it up, look for some redeeming quality that acts as a saving grace, in order to inhabit it. It’s too loud. It’s too bright. It’s too painful to the touch. It either smells like nothing, or it smells like too much of what it is. I either can’t taste it, or the taste is overwhelming. And the space I move in leaves me with bruises that I don’t remember getting — I bump into things, and move on. I barely feel it, half the time. Sometimes not at all. And the next morning after a long work session, I can see where I stumbled, where I slammed my knee against the door frame, where I misjudged the distance and marked up the insides of my forearms with the blunt ends of tool handles.
The world as it is — immediate and with its own set of ideas about how things should be — doesn’t exactly make room for me. And even as it erases me, it smiles in a friendly way, with supposed good nature — it’s all “for my own good”. Because it cares and it wants to help. It only wants me to be happy. But it knows precious little about me. And it doesn’t care to find out. Because ultimately, it really only cares for its own good. To be perpetually re-inforced and supported in all its flawed and dangerous assumptions.
And so I lift up my eyes and look to the distance — behind me, where are the patterns? Where is the place that people like me come from? Where is the place that the aggregate of history I call “mySelf”, comes from? I have no way of knowing where exactly life will take me. Unlike my siblings (and my friend N), I don’t follow the path laid out by my immediate predecessors. I have no children to add my existence as a meaningful part of the unfolding human experiment… No children to even prove I existed, generations from now. My own particular version of my bloodline ends with me. This is it. And there it is. My siblings have ensured that our line will continue with a bunch of kids. And I find comfort in the fact that — perhaps because my one sister and my brother and their respective marriages are near exact replicas of our parents’ — my niece and nephews are turning out so, so similar to me, with the same sorts of sensitivities, the same sorts of disturbances, the same sorts of convictions, the same sorts of in-your-face defiance that does what it feels is right. They’re much more like me, than they are their parents. And that comforts me in a disquieting way.
And that legacy will go on. Through them.
But that offers me nothing. Not personally. Not directly.
I lift up my eyes and look to the past — far, far into the past that most have forgotten about, because they can afford to. They don’t need it, so I’ll take it. I look to the legacies that were left behind by who-can-say how many influences. And I examine the parts of the world that each of the 200-some ethnic influences in my DNA hails from. I roam around the internet, uncovering independent researchers who geek out on this stuff for fun, saying online on their own sites and blogs, what the universities will never pay (or allow) them to say on the job. I find others looking through GEDMatch.com who are every bit as fascinated as I, and are overjoyed to connect with a clear distant cousin who shares so much of their genetic building blocks.
In the patterns, in the textures, in the warp and wend and weft of the fabric of all humanity, moving, moving, moving… without ceasing, without end… we weave, we weave, and sometimes we mend.
Of course, my friend N and I have always wanted to connect with our histories. Because our world has so often refused to fully accept us. Our own pasts sought to erase us, to tell us we were wrong, to subtly and grossly discount our lives and our versions of our lives, so that we wouldn’t upset the status quo… keep things progressing per usual. And our presents aren’t nearly as accommodating to us, as it would be if we would just behave and do as we’re told.
N married years ago. My partner was the DJ at his wedding, and he’s now got two sons. And he still has his legacy, his history behind him, to raise him up and move him forward.
I have my raw DNA data. I have my books. I have my bookmarked online tracks I have left, each of them providing markers that point me back to the North Atlantic, West Asia, the Baltic, Mediterranean (East and West), South Asia… and points beyond – even to the Red Sea.
Irish. Orcadian. French Basque. Catalunia. Galicia. Troublemakers, traditionally.
Algerian. Tadjik. Mozabite Berber. Chechen. Tunisian. Moroccan. Nogay. Afghan Pashtun. Ossetian. Punjabi Jat. Brahmin from Uttar Pradesh.
It’s all there. It places me. It grants me residence in territories where I could never belong in person, right now. In places where I’d be killed. Or worse. It places me. It gives me the right to be there. To be here.
And no one can deny it, or take that belonging from me.
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Ramblings of a Jack of All Trades, Master of None
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