I’m stating my understanding of this issue as a question, even though it’s something I’ve observed first-hand, while in groups of autistic adults. It could be I’m wrong – though I think there’s something to this.
Could it be that autistic women get missed by providers and researchers, because our anxiety response to autistic experience — by its very nature — causes us to be more withdrawn and concealing, while with men, it causes them to be more outgoing?
I know this question is absolutely fraught with oversimplification. One could easily and accurately substitute “men” and “women” with terms like “extroverted individuals” and “introverted individuals”. But for the sake of this query, I’m pinpointing women. Because, well, we’ve just gotten so lost in the shuffle, and as a group, we tend to get overlooked.
I’m also calling out women-specific differences because it’s often the case that men who feel sidelined by this gender-specific generalization jump in to remind me/us that it’s not just women who have this, but certain men, as well. It seems like conversations specific to women’s needs are perpetually overridden — sooner or later — by the needs of men who have similar needs, and don’t like being left out.
Nobody likes being left out, and that’s not what I’m trying to do. I’m just trying to get women a little bit of consideration, for the time being, as the non-standard-when-it-comes-to-autism-criteria creatures that we are… before we inevitably broaden the conversation to include everyone all across the gender spectrum.
Anyway, gender politics aside, I’ve personally observed firsthand that autistic women have a tendency to hold back and withdraw into the background, while men jump forward in all their autistic glory. And so women who are able to camouflage and conceal their issues, end up covering up their issues in ways that makes it impossible to ask for help. That’s beneficial in interacting with others, but it doesn’t help researchers (who are often male) to even notice that women are autistic, when they so comprehensively associate autism with those specific “male”/extroverted behaviors.
And it certainly doesn’t help when we have to ask for assistance — but nobody has noticed just how much we’re actually struggling.
I suspect it may have something to do with how we handle anxiety and stress — how we’ve been trained to handle it socially, as well as directly resulting from the unique function of our individual sympathetic (fight-flight-freeze-fun) nervous systems. Those of us who handle stressful or threatening situations by leaping forward and engaging with those situations, or “discharging energy” through tics and overt behaviors and mannerisms, are going to get “flagged” as clearly autistic. Those who handle stress and anxiety internally, dealing with it in an introverted fashion, are going to get missed.
Those whose sympathetic nervous systems (SNS) jumps into “fight” mode are noticed — their gestures and tics and visible stims are noted for the record. Autistic for sure.
Those whose sympathetic response to threat instigates “flight” may be noticed, if the flight is overt. Consider: Selective mutism. Becoming unresponsive to others’ communication attempts. Appearing deaf… or catatonic. Very autistic indeed.
Those whose SNS leans towards the “Fun!” response, can be seen as either autistic or not, depending who’s looking. If the fun translates into things which other (neurotypical) people find fun, then they can pass as non-autistic. But if their fun involves quirky, geeky, nerdy sorts of activities, then they can be seen as obviously autistic.
Those whose SNS goes into “freeze” mode, who instinctively conceal themselves and their behaviors and their anxieties and fears, will be forever under the radar. Nobody will realize, because like a fawn frozen in place on the forest floor, we’re keeping quiet, keeping silent, keeping invisible, till the danger passes. Not autistic at all. Why in the world would she think such a thing?
I think the bias / blindness has at least some roots in outdated understandings of the human nervous system. It used to be that the Sympathetic Nervous System was considered to involve only Fight and Flight. Now we know better. It involves Freeze responses. And it involves Fun! I’d hazard a guess that we can thank that old only-fight-or-flight SNS myopia for the underestimation of the impact and prevalence of autism among women throughout the population.
And not only women — yes, men, too. Men may often freeze and camouflage, rather than jump up and fight or flee to safety. We know that now, after so much PTSD work with veterans of the perpetual Iraq-Afghanistan wars. Just as women may go into fight-flight mode, looking “more autistic” in the process, men on the autism spectrum can withdraw into freeze mode and not exhibit any overt autistic behaviors. There’s a full spectrum of behaviors and response types — and on top of it, each person may have a wide repertoire of responses in their own SNS. Again, it’s a spectrum. We have to look at the whole picture.
Because once you can see the full picture, and you know what you’re looking at, the “mysteries” of life start to reveal themselves as actually very common-sense.