I myself can relate to much of what they say. A few weeks ago, I confided to a group of autism parents from our church that even sitting there, talking to them, took a great deal of effort on my part as I worked to focus on what not to say, when to keep my mouth shut, when not to ask impertinent questions or spout off with a blunt truth, when to express sympathy (that I really feel) while trying not to be awkward about it, when to make eye contact, when not to make eye contact, when to smile or use my facial muscles for some other emotional expression, when to notice and how to interpret their own expressions, especially when they don't seem to match their words, when to avoid getting distracted by some minuscule feature of their face or clothing so that I can continue to pay attention to their words. Even my brief mention of how hard I was working (I didn't go into the above detail) felt like a misstep to me, and I only said it as an example of how hard our children with autism might be working in a similar situation.
That's not to say that I think I have autism. I'm clearly of the square peg variety in a world full of round holes and was that way as a child. I learned a long time ago to start keeping my catalogue of social algorithms, much like this one, adding to and modifying them based on my observations of "socially able" people. For me, social interaction is not and never has been a natural process, but with my accumulated algorithms, it's become an easier one. That said, after an intense interaction like that group meeting with autism parents at my church, I need some serious downtime to regroup. It's just exhausting.
But women are complicated, are we not? I can walk into a room full of students and teach, no problem. Sure, I'm worn out afterward, but who isn't? I can walk into a party and stand there, alone, no problem, or try to talk to people, no problem. I don't particularly care which one I'm doing. With the latter, I'm working a lot harder, latching onto conversational bits that would make the exchange more interesting, trying not to overtalk or overstare. But I can do it. I'm not shy and never have been. I just like to be alone, and I always have. And even though I can engage in such situations, I'm never entirely sure that I'm "doing it right." Indeed, based on reactions even from friends, perhaps not.
Socializing is, for me, a form of exercise, like taking a run. I have always done it and will continue to do so because it wears out my socializing muscles in the way a 10-mile run might work out one's legs. But the recovery is lengthy, and the mileage I can do is limited. I'm not one of these people who can travel with associates and hang out together 24-7. I have to have my time alone, or the cranky, edgy side of me starts to emerge, like a rumbling volcano. I wonder how many women on the spectrum have similar experiences. I also wonder how many men differ, possibly not being as able as women--or so it has been said--at covering their differences.
I've often noted here and in real life that my children come by their abilities and talents and deficits and quirks honestly. They're fruit of a couple of introverted, loner trees. That's not to say that either of us, the parents, are autistic, but at least we have an understanding in many ways of where our children come from. And since my spouse is male and I'm female, even our understanding and our experiences, while inwardly similar, have manifested outwardly in very, very different ways. Based on what I've been reading, the same applies for autistic people, but because of the presumed male bias in autism, the males have been getting the bulk of the attention and analysis.
Females on the spectrum. Let's hear more about them. Let's read more about them. Let's hear from them, too.
12 comments:
You describe this so welly, Emily. Thank you. I also think there is a bank theory as there is with any relationship. If I wear my socializing muscles out but get minimal positive mental input (like at mandatory extended family gatherings), then I start to drain into the negative zone. Now teaching a class or lecturing about a topic I'm confident in, etc., now that gives me positive mental input, so while it is tiresome, it is also recharging my mental spirit. If I get out of balance (like during this time of year), then it's hard for me to get out of the red and back in the black!
We have much in common, and I was head-nodding in agreement as I read this. I suspect that lots of us parents of children on the spectrum (and research bears out the broad autism phenotype) have similar personalities and difficulties with social situations.
I just finished reading through the NPR thread; really interesting reading. And as a mom to one of those LFA kids with an intellectual disability, I've never thought you ignored that range of the spectrum. Not all posts cover all of the spectrum, nor can they or should they.
"the males have been getting the bulk of the attention and analysis"
Most of the attention we males have been getting is unwelcome, dangerous and soul crushing.
I hope our female sisters don't get visited upon with the same level of "attention" as we do. This is one area you don't want to be equal.
The attention of which I speak is research attention.
Kwombles, My ds is ASD and my husband and I have a running argument about which of us is the more Autistic. He can't handle large groups, we both have some sensory processing issues, I am notorious for making social gaffs, and the list goes on. I doubt either of us would qualify for a formal ASD diagnosis but I agree with your thoughts on parents of ASD kids.
What Emily and Ange say makes a lot of sense. I can get up in front of a room full of people and run trainings on topics that interest me, and it's both energizing and exhausting. But an evening with my husband's extended family makes me want to curl up in a corner and hide. It takes a huge amount of energy to play-act my way through social interactions, and I'm willing to muster that energy only if there's a reward that makes it worthwhile.
I still have to re-read e-mails and remind myself to insert greetings and social niceties before I click "send." Without this second reading, my communication comes off as utilitarian, unfriendly, and overly blunt. I compliment people on their clothing or on pictures of their children taped to their cubicle walls, because I have watched and memorized these transactions and I know that's what people do to build and reinforce relationships. I know I need the relationships to survive at work; I just don't have the hard-wired ability to maintain them without conscious effort. I don't bother to fake it with real friends, because the real ones are on my wavelength to begin with.
Like many of the parents who commented above, I'm not autistic. But as an introverted sensory-sensitive intensely focused obsessively organized hyperlexic socially awkward geek, I'm a big believer in the broad autistic phenotype.
As I look back on my life, I'm not sure how well I ever "passed." I didn't have a diagnosis for decades, and certainly no one ever pegged me for autistic, mainly because I didn't fit the limited definition of autism in play at the time. So if "passing" means that I avoided the label of autism for decades, then yes, I was able to do it, and I reaped the benefits that a profoundly ableist society offers.
But I wouldn't say I've ever fooled anyone that I'm "normal" or "typical" or whatever you want to call it. In fact, as I got into my late 20s, I began to find that my veneer of "having it all together" had begun to wear so thin that people actively became angry with me for having pretended to be normal when I unwittingly betrayed that I was not. At the time, I was beating the crap out of myself trying be someone else, and I couldn't understand why I didn't have enough willpower to be who I was "supposed" to be. Now it all makes sense, of course. Good thing I figured it out at 50. Much better late than never.
Whatever passing I've done, I've done at great cost to my physical health, especially to my auditory system, which has always been atypical. At this point, all the compensatory mechanisms I've used all my life to get by with an undiagnosed auditory processing disorder are failing, very likely from decades of extreme overuse, and I'm in the process of applying for disability because I can no longer work.
So, am I glad I was able to "pass" as well as I did? In some ways, yes. Without that ability, I wouldn't be where I am now, and where I am now, despite my disabilities, is better than what most people in the world will ever have. But it was a deal I struck with the devil, because I did it by nearly running my sensory processing system into the ground. At this point, I have no choice but be "out" about my disabilities. If I try to fake it anymore, I can't ask for the accomodations I need, and I can't put into place the adaptive strategies that allow me to be out in the world, doing the things that are necessary and meaningful to my life.
You do realize that you are helping women with all sorts of brain issues, not just spectrum issues, right? Thank YOU.
Social situations are difficult for me because I'm a square peg, too, but mainly because I'm hearing impaired. My hearing aids make a huge difference, but they don't amplify and clarify everything. Parties and other group situations are very hard to handle. Bowling as a social event? Forget it.
This past summer, I attended a conference where Tony Attwood spoke and he said while the current estimates have 4 boys diagnosed with AS for every 1 girl, he thinks it should me more like 2:1. But like typical girls are more emotionally/socially aware than typical boys, so are autistic girls to autistic boys, so they don't fit the current criteria as obviously. They recognize they're different and start trying to compensate and, "act as if" from an early age. He said girls tend to not get diagnosed unless they have another mood disorder that gets recognized first, possibly resulting from the stress of trying to blend in, like depression, eating disorders or anxiety disorders.
Then he went on to describe what early childhood and school life would be like for a girl with AS, and he was describing my childhood. I texted my husband that it is possible I'm on the spectrum and he texed back, "probably." lol! Since then, I've gone back and forth. I think I'm more the socially anxious peg in a round hole world as you described.
Very interesting to think about, though.
I haven't followed the Allen Francis threads, so can't know if I'm on point in the global conversation. But, I think you do a good job of describing the characteristics of a particular personality type. I like the "social interaction is exercise" comment. I too feel that way (and, as with exercise) feel that it can have value in my life, but it's something I have to do, and leaves me tired out at the end.
This is well within the idea of "personality types" and not disorders. Just like I don't find sheer joy in running (like some runners do) I don't find social interaction to be a re-charging, energizing experience. Neither of those things are "disorders." They're ranges of skills and abilities. Understanding these characteristics about ourselves and others can help us all interact. But we d need to differentiate between them and life-altering disorders that limit one's ability, to, say, walk at all.
A little late here, but thought I'd drop my 2c in.. and by the way, this isn't necessarily addressed to the post author or anyone else specifically, just some random thoughts as I read this wonderful post.
What's interesting to me, as an autistic female, is how often I see other women (particularly other parents of children with autism) describe feelings and experiences that mirror my own, then quickly add, "But that doesn't make me autistic or anything!" Well, perhaps not, but I wonder if there isn't more of a stigma to being a woman on the spectrum, if only in our own minds. I belong to a group of (primarily) autistic mothers of autistic children, and one common experience is being ostracized by the local NT autism parent clique if we dare to 'come out'. It's as if we must choose: are we part of the autism community or the autistic community?
Yes, there's still a lot of mystery and misunderstanding in autism as it presents in women. I think it's one of the reasons many of us were not diagnosed til adulthood. I had no idea what autism was until my kids were diagnosed.
The line between "quirky" and "disorder" is a blurry one. I mean, what's a disorder anyway? "Disorder" is a subjective term relative to whatever we decide is "normal". But in terms of myself, I'm normal. In an autism world, I'm probably incredibly normal. :-)
There is often discussion about "passing". It's a complicated subject for me. Before I knew anything about autism, I certainly tried hard to pass. Maybe I succeeded and maybe I didn't. Perhaps the fact that the general public is still quite ignorant about autism has something to do with that. I have a friend who is also an Aspie and prides herself on being able to 'play NT'. Me, I can't do it anymore. It's soul-killing.
I apologise for the length and rambling of this comment. I have a lot of difficulty articulating my thoughts in a meaningful pattern. Hopefully someone somewhere will get something useful out of it. Cheers!
Twitter: @outoutout
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