* Note: I’ve spelled “rigor” with a “u” (British spelling) because it actually feels more rigourous 😉 Ha ha! Just having a little semantic fun on a Friday.
This is another one of those dog-tired days, when my mind is spinning and I have no idea how I’m going to get through the day. I’ll get through it, of course. It’s what I do. But in one piece? In a good frame of mind? I dunno.
I have to deliberately remind myself of the fact that I’m tired, because I tend to lose sight of that. I get so tired, I can’t figure stuff out — including what sorts of emotions I’m having, and what I should do about them. I get physical weariness confused with depression and low self-esteem. It probably sounds strange, but a lot of different emotions feel like each other to me, so I have to sort them out logically, scientifically, objectively, in order to not get dragged down into an emotional hole. Once I figure out what the emotions are really about, I can get on with my life without quite as much suffering.
Come to think of it, I think that’s why blogging helps me so much. It helps me sort out my emotions — literally — and figure out how I’m truly feeling.
Anyway… I’ve had a heavy week of peopling, and it’s taken a toll. I had a lot of meetings, some of which felt like utter failures, but which were actually okay. Nobody seemed as horrified by my performance as I was. They all seemed to think everything was fine, while I was convinced I was careening towards disaster. I know where the disconnect is happening. My emotions are getting jumbled up, and I don’t have the presence of mind to sort them out, sometimes. I haven’t yet gotten back in good shape from my business trip, last week… and last night, it felt like the whole world was falling down around me. I just wanted to crawl into a hole and leave everything behind. I really wanted everything to just end. My marriage. My job. My mortgage. I wanted to take the money I’ve saved, get in my car, and keep driving till I didn’t recognize anything around me.
Start fresh. Leave all the overwhelming and inescapable responsibilities in my rear-view mirror. Literally. Stop it all. Just stop. And start fresh. Run away! Run away!
I knew I was tired… logically, I knew it. But the whole alexithymia thing was dragging on me (as it often does). I knew I’d had a highly interactive week. And I also knew that I had fallen behind in a lot of my work. But I was really unclear about how I was supposed to feel about that. Was I supposed to be proud of myself for making it through at all, or frustrated with myself for not doing everything I’d intended to? Was I supposed to be depressed because I didn’t live up to my promises, and I’m putting my team and projects at risk? I wasn’t clear about all the stuff I’d actually gotten right — it just felt like everything was wrong. Again, emotional confusion based on my physical state… bone-tired weariness….
And now I can’t find my power cord for my work laptop. That’s unfortunate. I’m working from home today, and I’ll need to plug in. For a while, at least.
Well, I always have my mobile phone to use in a pinch. I can do just about everything I need to do on that device. I’ll just be judicious with how I spend my power. And I’ll order a new power cord from facilities.
Or, I’ll drive to the office and get the cord I have there — no, come to think of it, I’m not doing that.
But I digress. I started out wanting to write about how an autistic life is a rigourous life, by its very nature. In my piece about how the autistic “medical model” makes me sick, I talk about how just because autism can be demanding — even depleting — that doesn’t make it wrong or disordered, in and of itself. It’s demanding, yes. But it also has a whole lot of advantages, and I wouldn’t trade it for the world.
Wanting to “cure” autism, in my mind, is like wanting to cure fair skinned people who live in sunny climates. Should “ginger” folks who burn at the slightest exposure to the sun be forced to expose themselves to sunlight without any skin protection so they can get used to the UV rays. That’s never going to work. We all know that. It’s just going to harm them. Burn them. Make them miserable. Possibly give them cancer, eventually.
Or another analogy: forcing kids who are allergic to nuts to eat peanuts, so they “get used to” them, and refusing to give them a shot to counteract the anaphylactic shock. That makes no sense. No parent in their right mind would do that to a child they love, and countless schools jump through all kinds of hoops to keep allergic kids away from nuts. But they won’t make accommodations for autistic kids who are suffering — often (like me, once upon a time) in silence.
“Exposure therapy” for autistic people is a ridiculous concept. And yet that’s what autistic people are expected to pursue — “suck it up” and just get used to the equivalent of burning sunlight on fair skin… or metaphorically eat a handful of peanuts (with no Epi-pen in sight), to acclimate their bodies to the substances that make them swell up in life-threatening ways.
It’s absolutely pointless. And it’s counter-productive in many ways. Accepting that an autistic life is an exceptional life, which requires greater rigour than the neurotypical mainstream way of life, is — to my mind — core and critical to understanding autism, in the first place. And that acceptance needs to happen on two fronts — 1) with the autistic individual (who probably already knows it), and 2) in the broader world outside, which has a lot to learn about how to A) stop hurting us, and 2) make the most of our talents and abilities.
See, it’s not easy accommodating us. It’s not easy getting accommodations in the first place. In my case, alexithymia keeps me from seeing and sensing clearly what I actually want and need. I literally do not know, at times, just what that is. And then I need to figure out how to express those wants/needs in a way that makes sense to neurotypical folks. It’s not easy. And I often just “bag it” — leave myself and my own wishes/needs out of the equation, so I can live my life more simply. Once I get what I ask for, I then need to navigate using it properly and managing the situation to make sure I’ve gotten it right. Hm. That’s certainly not easy! And I need to give feedback to people about whether I’m all set or not — yet another challenge.
For the rest of the world, it’s even more confusing. They don’t understand how I function, they don’t understand what I need or why I need it. And they often don’t know whether things are working as desired.
Fer-example: People I work with don’t understand why I sequester myself in my cubicle, more often than not. They think I should be socializing with them, chatting for extended periods of time about this, that ‘n’ the other thing. They don’t seem to understand why I wander off when I’m overwhelmed, and they don’t get why I sometimes chase them out of my cube. They don’t understand why I’m not a big fan of going to loud, busy bars after work to socialize and eat food I shouldn’t be eating, surrounded by people who are drinking things I dare not drink. I’ve tried to explain, but it falls on deaf ears. I’m in the minority. My job is to “catch up” with the rest and conform. For the sake of the team.
My boss seems particularly mystified by me, even though I’d bet good money on the chance he’s on the autism spectrum, himself. He’s got a very Aspie-fied approach to understanding people, and social interactions seems to be his #1 area of specialized focus. He makes the effort to include me, to get me involved in things, then he’s confused when I’m not all whoop-dee-doo! about participating in things like business trips to Las Vegas, or wading into receptions and social “mixers” with complete strangers.
The thing is — and this is what I think gets lost in the whole autism accommodations discussion — when I (and others) are provided the different circumstances we need, in order to be at my/our best, the results far, far outweigh the costs, in terms of overall value/expense. There’s a massive “ROI” on letting me (and others like me) function the way that best suits my/our autistic nature.
That’s why the general concept of “accommodations” kind of irritates me. It’s too disability oriented for my taste. It feels like it’s all about managing deficits, preventing meltdowns, and doing the equivalent of replacing all the divots on the golf course, so somebody else can play through without disruption. It feels to me like it’s too much about avoiding disaster, and not enough about making possible the amazing, remarkable, unique results we can provide… if we’re just allowed.
Yes, autistic folks DO have issues with environmental aspects that are best avoided/mitigated. Yes, we DO suffer terribly, when we’re not accommodated and we’re forced to “suck it up” and just power through. The thing is, when we live and operate in a world that is exactly the way we need it to be, amazing things can happen. I’m not just talking about inventions and discoveries and cultural creations that move the human race forward. I’m talking about an extraordinary quality of life and humanity that can emerge to widen the understanding of what it means to be human, what it means to have a soul.
There are plenty of autistic people who don’t seem to have any particular skill or talent that sets them apart from the neurotypical crowd. And those people have value, as well. The ones who have learning difficulties or disabilities. The ones whose IQ scores are lower than expected. The ones whose burning passion is a select class of inanimate objects that most people don’t give a second thought to. And then there are the ones who have no burning passion at all, who don’t know what they’re feeling about anything, who feel no joy or elation, who frankly don’t know why they’re even here. Those autistic people have value, too — in ways that very few people can understand, but still matter. Very much so.
Autism is by its very nature rigourous. And when you accept that, welcome it, even embrace it, you’ve got yourself a pretty interesting life, I have to say. For me, the rigour happens every day. And by the end of it all, I’m wiped. Just done. By the end of a work week, I sometimes don’t even know my own name or recognize myself in the mirror. But I pull myself together and keep going, regardless of whether or not I’m on good terms with my reflection.
Because there is work to do. And I choose to do it.
For today, I won’t withdraw all my savings from the bank, hop in my car, and drive away to leave it all behind. There’s a good chance I won’t do that tomorrow, either. Or the next day or the next day or the next… It’s enough to recognize that that’s what I’d absolutely love to do, because this life-ing stuff isn’t easy. It’s rough-and-tumble, and it hurts like hell, sometimes. But that’s the deal. Joy and pain. Sunshine and rain. It’s all part of it, and yeah, it’s worth the trouble. Every bit of it.
Autistic rigour. I wouldn’t have it any other way.
Education is all about teaching and learning. Well, it should be all about teaching and learning, however, for all teachers to teach and all learners to learn, it must also be about equality of access. From my perspective, as a member of The Autism Centre, equality of access, through the genuine inclusion of autistic students – which sometimes means adaptation, and sometimes means making reasonable adjustments under the Equality Act – always means that practice should be based on a good understanding – not necessarily of autism per se, but of how autism impacts on the student, within his or her own specific environment, at any given time.
But where is the starting point for all this understanding? What are the building blocks upon which to develop educators’ understanding, which might lead to good teaching and successful learning, and reduce risk of inequality for autistic learners?
Instead of viewing people with ASD as “socially awkward” individuals who need to be “fixed,” we should instead conceptualize them as socially creative. They may not do things the “right” way, but they do them their way.
Note: This piece is about me — and only me — it’s my deeply considered opinion, based on my own personal experience of inhabiting this planet for over half a century. You’re free to believe whatever you like about the true nature of autism. But this is my stance (right now). If you disagree, write a better blog post and tell me about it. 🙂
Lately, I’ve come across a number of bloggers talking about how autism is more than just a “difference” for them. It’s a genuine disability. They suffer from it. They have family members who appear to suffer intensely from it. Autism is the source of tremendous pain and struggle for them and their loved-ones, and there is no way they’re ever going to sanction autism as a “difference”. It’s too disruptive a force in their lives, for that to ever happen.
I also had a brief exchange with someone last week who actively embraces the idea of autism as a disability, and they align themselves with the disability rights movement. They have the best of intentions, I believe, and from a philosophical point of view, I can agree with the value in doing that.
There are a lot of autistic people who are disabled. There’s a whole lot they cannot do, and my never be able to do, because of their issues and traits. I know a handful of autistic folks who wouldn’t last a day in the working world I inhabit. I’ve also known some autistic folks who do extremely well in my work environment, but struggled terribly with other issues. Autism is no joking matter, when things are at their worst. I’ve been through the proverbial “wringer” many times, myself, and I have to continually make conscious choices for or against things, because of the effect I know they’ll have on me.
One day, I can be completely laid out by my issues. The next, those very same issues lift me to sublime heights. If I remove the causes of my pain, I remove the source of so much inspiration. It’s all a matter of degrees with me.
For the record, I don’t consider myself disabled. Yes, autism can be a disabling influence in my life, but its effects are temporary and mutable. It’s like being a sprinter who has to run a marathon, every single day of my life. My routine exhaustion and need to remove myself and recharge (lest I begin to implode from overwhelm and sensory overload) is conceptually no different for me than the results of a strenuous workout. Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.
Is a thoroughbred racing horse disabled, because it can’t eat the same types of grains as other horses? Because it is so high-strung and hypersensitive that it develops inexplicable white spots on its legs? Is it disabled, because it’s temperamental and prone to outbursts? No. It’s a thoroughbred. It’s a unique and different kind of horse, and when it’s allowed to do what it does best, you’d never ask it to be anything different.
And I come back to it again, is autism itself THE disabling thing?
I’m not so sure. I mean, being autistic predisposes me to overwhelm, hyper-sensitive pain and discomfort, as well as the occasional meltdown/shutdown. Much like having fair skin predisposes you to getting sunburned, if you don’t use sunscreen. In the case of fair skin, the solution is not to change your skin, add more melatonin, or convince yourself the sunburn doesn’t really hurt. It’s to take steps to avoid sunburn.
And that’s where I see the medical model of autism going afoul of my autistic person. According to the medical model, autism itself (or in the above example, fair skin) is the root of the problem, and it needs to be eradicated. It’s a disorder. It’s a dysfunction. It’s an aberration that — for the sake of smoother functioning of society — needs to be changed in some way, if not gotten rid of entirely.
Classifying autism as a diagnosable disorder (and I’ll freely admit, the idea of diagnosis appeals to me, not because of the medical overtones, but because of the science — Science! – cue Thomas Dolby) makes it a “thing” that needs to be fixed, that needs to be addressed. It removes it from me, as a person, and turns it into the cognitive-behavioral equivalent of a tumor, a mass, a growth of some kind. Maybe the “mass” is benign, for the most part. Maybe it just causes occasional discomfort. Or maybe it impinges on nerves and causes me unspeakable pain. In any case, it’s something separate and apart from me that arises from a physical cause and is addressed as a distinct (but disposable) aspect of my life experience. According to modern medicine, this condition, this disorder can (and should) be treated.
The thing is, it’s all more complicated than that. Yes, my body is differently “tuned”. Yes, there are experiences that others take for granted, which are unbearable to me. Yes, there are many aspects of my life which are physiologically uncomfortable, even painful, and depending on my state of body and mind, those aspects may be more or less extreme. But is a physical/medical approach the one and only approach I should take, when it comes to managing my situation?
Is changing the essential makeup of fair skin the only way to avoid sunburn?
Obviously (to me, anyway), there’s more to it. There should be more to it. Because what parts of life are ever that simple? Few, if any.
There’s the whole environmental thing. And the whole social thing. And the whole accommodations thing. And the whole pro-active self-care thing. There’s me taking care of myself, and there’s having other people to help watch out for me. There’s my diet, there’s my exercise, there’s my social circle (or lack thereof). There’s my inner state, my outer circumstances, my interactions with the world around me… That all comes into play in an intricately interconnected dance, so that I cannot possibly ascribe to only the medical model as a way to explain and address my autistic experience(s).
It’s all very well and good to seek physiological explanations for why things are like they are with me. I tend to turn to biochemistry and neurobiology for explanations about why people behave like they do, and in some cases, they offer greater clarity. Certainly more quantifiable data.
But to look at those quantifiable data in and of themselves, with no connection to the outside world and the artificially created circumstances… that’s just asking for trouble.
Because then the problem originates in my system. It says there’s something wrong with ME, my physiology, my own personal context. It seems to absolve the outside world of any kind of credit or culpability and treats my system as a self-contained, hermetically sealed entity that has a mind of its own and does what it pleases… just ’cause it feels like messing with me.
To overlook the effects of environment, as well as human-made complications and challenges, does my physiology a disservice. It makes it sick. It makes ME sick. It makes us out to be disordered, in and of ourselves, rather than in relation to hostile circumstances.
Expecting me to just motor through life, carefree and happy-go-lucky, regardless of extenuating conditions is like, well, expecting a fair-skinned individual to walk across the Kalahari Desert without any cover-up or sunscreen, and not be sunburned. It’s like running a thoroughbred hard, putting them up wet, and then repeating the process again the next day — or that very same afternoon — and doing it again. And again.
So, that’s my “take” on the medical model, as it applies to me. I’m sure I’ve missed some important nuances, and I am probably over-simplifying things, here and there. Or maybe I haven’t, and I’m spot on, all across the board.
Bottom line: the medical model may work for some things. But my autistic nature and experience? Nope. Doesn’t do the job on its own.
And I’m sick and tired of being treated like I’m sick and it’s all my (and my autism’s) fault.
I want to take a step back and reconsider something that comes up a lot in discussions about Autism / Aspergers – the concept of friendship. I’m not sure we’re thinking about this clearly. It could be that we’re applying neurotypical measures and values to the criteria for who’s a friend and what friendship constitutes. And I’m not sure it’s serving us. I think it may be causing a lot of us to think we’re lonelier (and more alone) than we really are.
I am beginning to suspect that Autism / Aspergers comes with its own unique brand of friendship. And that distinct “friendotype” is no less valid than the neurotypical type — it can be every bit as fulfilling, and it might just help to make the world a better place.
The sooner we stop measuring our friendships by neurotypical measures — and we quit feeling badly about who we are because we “don’t measure up” to non-autistic standards — the happier we’ll be.
At least that’s what I think.
Let me speak for myself. I suspect others will agree. Hear me out.
Let’s look at the dictionary to see how “friend” is defined:
a person whom one knows and with whom one has a bond of mutual affection, typically exclusive of sexual or family relations.
Most people would not say they “know” someone until they’ve spent a great deal of time with them, been through a number of good and bad experiences with them, and have “gotten to know” them. But most people aren’t autistic. Most people aren’t empathic. Most people aren’t so highly sensitive to others, that they can “pick up” on what’s going on with that other person in an instant.
As for the bond of mutual affection, most people (in the neurotypical model) spend a lot of time withholding their affection. They’re stuck in the idea that they’re separate and apart from everyone and everything around them. And crossing the chasm of interpersonal differences is a monumental effort for many. So, bonds of mutual affection don’t get created for quite some time, until certain criteria are met.
Exclusive of sexual or family relations — that’s actually easily dispatched with many autistic folks, as we don’t automatically interact with others in a sexual way. Unless we’re hypersexual autistics (it happens — I used to be that way, years ago)… then things get trickier. But nowadays, I have no more interest in having sex with random people I meet and connect with, than I have in having surgery. The two seem equally intricate and intimate to me, as well as potentially painful and … fraught.
So, on those three official criteria strike me as particularly neurotypical in nature. And they don’t allow for any autism (or empathy, for you non-autistic empaths in the audience) in the definition. Again, it’s a case of mob-rule assumptions about how people are, how they behave, and what “should” happen as a result.
Now, let’s talk about the “folk” definition of friendship. Friends are people whom you feel you can talk to about anything, who can — and will — step up and support you in your hour of need, thanks to the personal bond you have with them. They’ll come to your assistance, no matter what. And they’ll put up with your sh*t with long-suffering grace, because, well, they’re you’re friend.
And you’d do the same for them.
Here’s my issue with this model:
First, not everyone is completely unable to connect with others, except under select circumstances, after years of history with them.
Some of us can actually connect with others on a deep personal level, regardless of how well we know them or how long we’ve known them. It can happen very quickly. It does happen very quickly for many autistic folks. We can be highly empathic. We can sense our similarities and connections with others. We can co-experience others’ moods and state of mind/body/spirit. And we can establish a really close bond with those others almost instantly. (It’s a lot less wonderful than it sounds, by the way. It can be pretty confusing, frustrating and tiring.)
Because we can empathically connect with others, we actually meet the first official criterion for friendship — we know (yes, literally know) other people on a deeply personal level. And it can happen much, much more deeply than in neurotypical cases.
Second, we actually can have “a bond of mutual affection” with the people to whom we connect instantly.
Not only can we feel a bond with them, but they can feel a bond with us. We see them. We know them. We can co-experience their lives and widen our own in the process. And others may really respond to that sense of connection. People crave understanding. They crave feeling known and recognized. They hunger for the type of acceptance some of us can offer them, and they thirst for that sense of being “seen” as who they are. They get what they need from us, when we’re empathically connected with them. And that can form a close, almost uncanny bond that’s a welcome change from your standard-issue alienation that most folks marinate in, socially speaking.
For the record, this is not a “faux” connection. It’s real. It’s genuine. It’s unique. And for some of us on the spectrum, it can be a way of life. Everyday autistic life.
Of course, empathicness doesn’t necessarily pick and choose between fun people to connect with and the miserable people who cross our paths. So, we can end up inadvertently connecting with and forming a bond with toxic people we should run from — but who feel a deep connection with us, because we’re co-experiencing (and hence supposedly validating) their experience.
And then we come to the absence of family / sexual relations.
This may actually be the crux of why autistic friendship patterns can be so different from non-autistic friendotypes. It seems to me that non-autistic people are much more closely aligned with people who are related to them by blood, or who have had sex with them. In fact, it seems at times as though some allistic folks use blood ties and sexual relations as a way to build their social circle.
If you’re related, somehow that overrides countless other considerations (is someone an a**hole? are they a predator? a moocher? a problem?) Apparently, there’s some inborn obligation to put up with them, to interact with them, to keep them in your social circle… as long as you’ve got a blood connection with you. Likewise, if you have adopted siblings, others may treat them like they’re not really part of the family. Or if you’ve got a “step-parent”, according to some, they’re not really your parent. It seems arbitrary to me. And it’s based on something you cannot control, you haven’t chosen, something that fate’s pretty much foisted upon you. Maybe you get lucky, maybe you don’t. But according to non-autistic guidelines of who matters and who doesn’t, if you’re connected by blood/marriage, that counts for more than personality and/or what you bring to the dynamic.
And then you have “sexual relations” which are not just just having sex with someone, exchanging fluids, making babies, etc. It’s also about interacting with others in a sexualized way: flirting, innuendo, all those little hints and wink-wink-nudge-nudge vagaries that tend to frustrate and confound autistic folks. It seems sometimes like non-autistic people are constantly “on the make” — always looking for sexual partners, constantly talking about sex, joking and hinting and whatnot. It’s like they use sex as a shortcut to connect with other people… maybe because they can’t (or don’t want to) connect in other ways?
Am I onto something here? Autistic folks connect above the neck… Non-autistics connect below the waist…? Or am I just stereotyping and being unfair? There’s always that chance.
Or perhaps autistic ways of connecting are more… pervasive than non-autistics? We can definitely be more sensitive, more empathic, more connected to our surroundings, and that both facilitates and complicates the relationships we have with people around us… to the point where culturally driven, somewhat chance-driven designations like blood connections and who’s available for mating are eclipsed by the swirling flow of sensory input that override our attention for those social conventions.
Anyway, all this being said, I’m more convinced than ever that autistic folks have different friendship patterns which are not less effective or less desirable than non-autistic friendship patterns. They’re just different from the ways the majority of folks build and sustain friendships.
If we struggle with friendships, it’s not because we’re doing it wrong. It’s because we have different patterns, different priorities, and others can’t accommodate / match us. The problem — again, there’s the social model — is that the relationships we form can become one-sided, lopsided in who’s doing how much work, and who’s actually benefit. An autistic person being drawn to a non-autistic person can be put at some kind of risk if that non-autistic person is incapable of understanding or reciprocating in a decent, humane way. Worst of all, is when the non-autistic person takes advantage of the autistic person, and the autistic person never realizes, because they can’t imagine why someone would do such a thing.
In any case, I’m continuously revising my understandings of things, and friendship patterns are just my latest fascination du jour.
Tomorrow, it might be something else.
I’m sure it will.
But for now, just for today… this is my revised understanding of friendships, on the rebound from my somewhat dismal declarations yesterday.
It’s a process. I never stop questioning, never stop learning. So it goes.
I caught sight of something on Twitter, this morning: A mention of knowing lots of people, but not having many actual friends.
I’m the same way. I know countless people. And even folks I don’t actually know — well I tend to get along with even them. Other people apparently love me, from what I can tell. I’m open, accepting, tolerant, I let them be who they are, and I can find common ground with them, no matter what our differences.
That’s great for the dynamic, but it doesn’t really do much for the actual relationship. I don’t know many people who actually know how and what I think about things, because it’s hard for me to put into words what exactly is going on with me. Writing is easier, but not everybody likes to read, these days, and anyway, social interactions are largely verbal, so…
The long and short of it all is that I have a lot of people who want to be my friends, but I have no interest in reciprocating. My friendliness is the extent of my interest in them. It’s not even necessarily interest in them, rather keeping the social interaction going. The vast majority of people I know would probably be pretty uncomfortable if they knew the truth about me and my challenges, which would end up isolating me a lot more than now. It’s just easier to mask and camouflage and simulate interest in interactions, rather than being authentically myself 100%.
Yeah, I know I should be past that. But seriously, I have a lot on my plate every day, and I just don’t have the energy or the interest in going that proverbial extra mile for the sake of authenticity.
Just get the interaction over without pain and bloodshed. That’s all I really want. I have no interest in being stigmatized, in being pushed aside, in being seen as less-than or disabled (even if I am really struggling, much of the time). And I’m a terrible activist. I lived in that world as a kid, and I’m done with it.
I really just want to get on with my life and do my thing, without having to worry about the fallout from my surroundings.
So, I continue on my way — very friendly, almost no friends. I’m very comfortable talking to strangers and striking up conversations… “connecting” with others in an impersonally personal way. But telling people what’s really going on with me? I’m not there… and I may never be.
Masking of autistic traits and behaviors is common among women and men on the spectrum. Your stereotypical autistic boy, who doesn’t make eye contact and sits in the corner playing with trucks, is not the only type of autistic person in the world.
A lot of us mask how our traits and our difficulties, hiding the truth of our experience from others, often to our own detriment.
So, why do we do it?
For me, one of the big reasons that I mask is to avoid the pain of others’negative reactions. Autistic folks can be so extremely sensitive to others’ reactions, and that’s especially true of negative reactions. It’s almost like someone else’s discomfort gets amplified 1000 times, L\like feedback between two loudspeakers, to the point where it’s absolutely unbearable.
Neurotypical reactions to autistic behavior are seldom comfortable or accepting, let alone celebratory, hitting me hard – like a punch in the gut – and amplifying as time goes on. Just like those proverbial loudspeakers facing each other with the vibrations and frequencies amplifying to earsplitting level, other people’s reactions to my stimming, lack of eye contact, repetitive movements, and holding forth on my favorite subjects, are physically painful for me.
So, I protect myself by masking. I just don’t show people what is going on with me, I don’t let on that I need help, and I don’t let anyone know what is really happening with me.
The net result is that I look great on the outside, and inside I feel like I’m dying. This happens numerous times each day, to the point where I hardly even notice it anymore.
No, I don’t let anyone know that I’m confused, that I’m frightened, that I lost the train of thought of our discussion about 20 minutes ago, and I’m literally just guessing at what I need to do next. As a result, I look great on the outside, and inside I feel like I’m dying. This happens numerous times each day, to the point where I hardly even notice it anymore. But when I think about it, it nearly brings me to tears.
We were supposed to have an awful, terrible winter storm yesterday. It was supposed to shut everything down for two days in the area where I live. Driving home from my parents’ place in Pennsylvania on Monday, we passed one sign after another on the highway warning about blizzard conditions for both Tuesday and Wednesday.
Well, it’s Wednesday, And it’s a bright sunny day, with beautiful blue sky and white puffy clouds floating around. There’s snow on the roads in places – especially on the back roads – and the sides of Main Street are piled high with plowed snow. But in terms of Snowmageddon, this was pretty much a non-starter. If anything, it was just another winter storm like many we see in New England. In fact, it was one of the less dramatic ones.
We’ve had storms in the past that dumped 27 inches on us in the space of a day. We’ve also had years where one storm after another dumped several feet of snow on us, day after day, and the snow was so high, I couldn’t see many of the big rocks in my backyard. I know we’ve had a lot of snow, when my backyard is a flat white surface. That rarely happened this year, and it certainly didn’t happen after Winter Storm Stella yesterday.
All of the drama and all of the anxiety about Stella reminds me of the drama and the crisis that often gets spun up around autism. I just spent four days with people who are very spectrum-y, and not once did I feel like there was something wrong with me when I didn’t make eye contact, or I stimmed, or I flapped my hands. This was true both inside my parents’ house and outside. My quirky nature has always been seen as just who I am in the place where I grew up. That doesn’t mean it was easy growing up there, but it does mean that all of my characteristics which the mainstream considers dysfunctional are simply considered attributes of my personality, which needed to be adjusted or mitigated or managed in some creative ways, to make it possible for me to interact effectively with my family and the larger community.
It seems to me, that the drama around autism is roughly akin to the drama the people in southern states feel when they get 6 inches of snow. All hell breaks loose, everything grinds to a stop, and the regular flow of life is completely disrupted. For those families who are not comfortable with the characteristics of autism, or who have different standards of behavior and being, I would imagine having a child who does not conform, does not comply, and seems to ostensibly have no capacity for doing so, would be roughly the equivalent of living in a tropical climate and getting 6 inches of snow in a day’s time.
For those of us who are familiar with heavy snow storms, we take a 27 inch storm in stride, and to have the equipment and the attitude and the skills to handle heavy snow falls, it’s really no big deal. Likewise, when you understand the rigors that accompany autism, and you can read the signs, you can adapt, and you adjust accordingly. It’s not at all a horrible epidemic pox that brands you and your family as rejects for all time.
That all being said, with autism awareness month is right around the corner, it seems like everyone is gearing up for yet another version of winter storm Stella. For those of us who know how to handle these things, it’s not always that big of a deal. Of course, it’s not easy, sometimes it’s damned hard, and it takes concerted work, just like clearing 1.2 metric tons of snowfall from your long driveway. But it can be handled. We can deal with this. It’s not the sort of thing that happens every single day to every single person, and we all handle ourselves with greater or less or degree is a facility, but still, it needn’t be a catastrophe, when it does show up.
As for me, today I am enjoying the snow. I am enjoying the last throes of winter. I am really enjoying the fierce cold snap, which makes my internal thermostat kick in and warm up, and I know from experience that whatever Mother Nature sends my way – whether in the form of snow or my autistic tendencies – I can deal with it. It’ll take some work, and it will take some doing, but it can be done.
I consider autism itself to be a distinct neurotype, which has been very well-concealed over the aeons, because societies in the past provided ways for all members of a community to contribute according to pre-set guidelines. As we have seen those “exoskeletons” of social conventions dissolve, our “endoskeletons” of individual identity – our strengths and weaknesses, our diagnosed conditions and disorders – have become increasingly pronounced, to replace the social exoskeletons of customs and conventions which used to define where our relative strengths and weaknesses lay.
Of course, within the context of considering autism a distinct and commonly occurring neurotype (rather than anomalous disorder), the question comes up about what purposes the DSM-V actually serves. That manual of diagnostic conventions, so useful when it comes to insurance billing and so revered when it comes to identifying issues that need to be addressed, effectively pathologizes autism as a disorder, rather than identifying it as a specific aspect of the human condition.
Of course, getting rid of the DSM and or removing autism from its listing, has a slim-to-none chance of happening. But if we’re stuck with it (for the time being – after all, homosexuality was eventually stricken from that record) might there not be another practical use for that manual? Might it not actually come in handy in certain ways?
From where I’m sitting, on this bright snowy morning, 40 miles west of Boston, Massachusetts, it seems to me that the DSM and the degree to which artistic people “meet the criteria” can actually help to determine where society itself is breaking down in regards to its treatment of its autistic members.
If we consider that problematic behavior is actually a symptom of individual distress in the face of essentially mutable conditions, rather than a sign of permanent personal dysfunction, we can measure the degree of the different criteria and how they occur in an individual to identify where the community at large is failing them.
If extreme sensitivities are noted, that could indicate a heightened degree of environmental stress, whether from noxious scents, chemical excess, or extreme social pressure that is completely inappropriate for that individual’s personality and innate tendencies.
If repetitive or stereotypical behavior is noted, it could also indicate heightened degrees of stress, which require some sort of adaptive or relief-oriented behavior (stimming), to offset the impact.
If lack of eye contact is noted, that can actually indicate hyperfunctionality in terms of processing information, where the individual is actually focusing intently on the subject at hand, rather than engaging in the social back-and-forth of eye contact, expressly so that they can reply effectively and appropriately. The more eye contact is noted as a deficit, the more it’s an indicator of needed training by the person who’s complaining about that behavior. They need to be educated about what goes on when we are not looking them in the eye, and their anxiety around that behavior (which keeps them from dealing effectively with us) needs to be dealt with.
That is to say, they need to deal with it, not put the onus of that effort on us.
All in all, I think that autism shows up much less as a disorder, when you’re in the company of like-minded people with comparable neurotypes. Within the company of your autism spectrum peers, you’re not going to be considered dysfunctional or disordered – unless your behavior wanders into the fringes and disrupts community interactions and cohesiveness.
All in all, I think that including autism in the DSM-V is problematic, but since it’s already there, and since there is almost no chance of it actually being removed in the near future, we might as well make use of that.
It may be grasping at proverbial straws… but until things change for the better, and autistic people are relieved of the stigma and drama around the official definitions of “autism”, we might just be able to wring somebenefit from that sodden rag of medically induced hubris, after all.
Note: People, this is satire. Kind of. It stems from the strangely popular trend now of studying “autism” in mice. Please don’t take this paper seriously — just as you shouldn’t put too much faith in any research which purports to understand autism in humans by studying … mice (of all things!)
But please DO take seriously the issue of sexual assault and predation on autistic girls and women. It’s a thing. It’s a very serious thing. And far more research needs to be done in this area, which must then translate to vastly improved awareness of this issue for autistic women, as well as training for girls and women on the autism spectrum to stay safe — and not spend most of their adult years wrangling with nasty PTSD issues, which just makes everything even harder. Seriously, people, this is no joking matter.
Come to think of it, it’s no joking matter, that research is being one on mice in order to understand human autism. It’s denigrating and oversimplifying and vastly underestimates the complexity of autism as a very human state of being, rather than an aberrant neurological disorder. The trend in that direction is just embarrassing.
Then read the “re-worked” version below, which rephrases everything in terms of mice. Yes, this is an experiment in absurdity, in hopes that autism researchers and the people who fund them will realize just how misguided studying “autism” in mice actually is… and hopefully steer their efforts and funding in more productive directions.
Like educating about and preventing sexual predation on autistic women and girls. That could actually help.
Sexual Abuse of Autistic Mice: Factors that Increase Risk and Interfere with Recognition of Abuse
A comparative study – and reality check
Autism, Autism Spectrum Disorders, sexual abuse, autistic mice
Two main arguments are made with regard to autistic mice and risk for sexual abuse. First, some autistic mice may be targeted for abuse by sexual offenders who may view them as vulnerable mice. Second, when autistic mice are sexually abused, they may show this in ways that get ignored or misattributed to autism rather than to possible sexual abuse. Because of these two issues, there need to be reliable methods established for determining whether or not a mouse on the autism spectrum has been sexually abused, and these protocols need to be informed by the challenges encountered by autistic mice, voiced by those along the spectrum as well as by researchers in the autism field.
Recent estimates from the Centers for Disease Control (CDC) and Prevention suggest that 1:150 mice have autism or an Autism Spectrum Disorder (CDC, 2008). The rate at which autism is diagnosed has been steadily increasing in the past twenty years, with reported increases in autism ranging from three- to twenty-fold in that time. Originally identified by Kanner (1943), autism has been characterized by challenges in communication, social ability, and behavior, although there can be great variability in the extent to which difficulties are manifested. In addition to autism, there is a spectrum of disorders related to autism including Asperger’s Disorder, Rett’s Syndrome, and Mousehood Disintegrative Disorder. In total, these four disorders are referred to as Autism Spectrum Disorders (ASDs), and approximately 560,000 individuals in the U.S. between the ages of 0 to 21 years meet criteria for one of the ASDs.
In the past few decades, there has also been a steady increase in the number of firsthand accounts written by self-advocates who self-identify as individuals on the autism spectrum. These accounts show not only that these challenges are often present because the social world is designed for typical individuals, with few adaptations for those who are not typical, but also how difficulties with sensory processing and overwhelming anxiety have a significant impact on their experience. As is illustrated in these accounts, autism and ASDs are heterogeneous in presentation. Additionally, although not considered as part of the autism diagnosis, cognitive ability in autistic mice can also vary greatly; some autistic mice have mental retardation while others score in the average, above average, or superior range of intelligence. The heterogeneity in symptom presentation and severity, the heterogeneity in cognitive abilities, and the fact that even individuals with superior intelligence may not be able to decode and/or engage in typical social interaction can result in considerable variability in the ability of autistic mice to interact and communicate successfully with others.
Most typical mice have social, communication, and cognitive skills that allow them to navigate the complexities of the social world with success. Despite these skills, there are some mice who will be victims of unwanted and harmful social interactions such as mouse sexual abuse. Current estimates suggest that 1:3 girl mice and 1:10 boy mice will be sexually abused by the time they are 1.8 years old. Given the nature of sexual abuse and the hesitancy to disclose its occurrence, the rates of mouse sexual abuse are likely underreported. Furthermore, when sexual abuse does occur, the sexual offender is usually someone who is known and trusted by the mouse.
Although there are no empirical data assessing the frequency with which autistic mice specifically are sexually abused, there is information about those with developmental disabilities in general. It has been noted that the rates of sexual abuse for mice with developmental disabilities are nearly two times greater than for typical mice. Moreover, some suggest that the effects of sexual abuse in developmentally disabled individuals may be exacerbated by social isolation and alienation.
When there are concerns that a typical mouse may have been sexually abused, there are protocols for how to evaluate whether or not abuse has occurred. Mouse Advocacy Centers (CACs) or Mouse Abuse Assessment Centers (MAACs) that offer medical examinations of mice and forensic interviews to make a determination regarding sexual abuse are often utilized. These determinations are based on medical evidence obtained, which is rare in cases of sexual abuse ; a previous history provided by the mouse and his/her family; and statements the mouse makes during the evaluation. In order for a valid determination to be made regarding whether or not sexual abuse has occurred, the mouse has to be able to participate effectively in the entire evaluation. Some autistic mice may have difficulty with the models currently used to assess whether sexual abuse has occurred because of the use of lengthy, one-time interviews and the need for sustained reciprocity and verbal exchanges. For these reasons, it is important to develop protocols for use with autistic mice that are sensitive to the way in which autistic mice most easily interact and communicate with others.
The goal of the present paper is to highlight the reasons why autistic adult and adolescent mice may be vulnerable to sexual abuse and to raise awareness about the lack of adequate protocols for evaluating autistic adult and adolescent mice when there are concerns of sexual abuse. For the purposes of this paper, the discussion will be limited to autistic mice or Asperger syndrome only, not the other ASDs. In the current paper, two main points will be argued: (a) that autistic mice are at risk for sexual abuse and may have challenges being understood if they make a disclosure of abuse should it occur; and (b) that when autistic mice are sexually abused, they may show this in ways that get missed or misattributed to autism rather than to possible sexual abuse. Furthermore, when there are concerns about possible sexual victimization, there are challenges in evaluating autistic mice due to the unique ways in which autistic mice communicate, making the use of traditional strategies for assessing whether or not a mouse has been sexually abused inadequate. This issue will be briefly addressed in the conclusion of the paper.
Characteristics of Autism and Risk for Sexual Abuse
Autistic mice encounter behavioral, social, and communicative challenges largely because the social world is designed for typical individuals. Although not an issue for all autistic mice, certain social-emotional and communication challenges, when present, may be interpreted by sexual offenders as vulnerabilities that they can exploit. The current section highlights the increased risk for sexual abuse that might be present for those autistic mice who have the specific social-emotional and communication challenges discussed.
For example, interpreting the emotions of others may help a mouse identify safe from unsafe individuals. Although some self-advocates describe a keen ability to process and intuit others’ emotions, other self-advocates describe their own significant challenges in this area. Research has also shown that emotional processing can be difficult for some autistic mice. A review of the literature was conducted related to the emotional competence in autistic mice with regard to four areas required to be successful in social interactions: (a) expression of emotion; (b) perception of emotion; (c) responding to emotion; and (d) understanding emotion. It was noted that laboratory studies of autistic mice generally reported that those who have few symptoms of autism are able to express simple emotions and respond to others’ emotions, whereas those who have many symptoms of autism are more likely to encounter difficulties in emotional processing. It was also found that in natural settings, many autistic mice may encounter challenges in identifying emotions and responding empathically to others.
It can be even more difficult for autistic mice to understand the emotions of others when the emotions expressed are deceptive (as may be the case when interacting with a possible sexual offender). Some found that high functioning autistic mice were less able to identify facial expressions that depicted deceptive emotions and were less able to understand the reasons why someone would display a deceptive facial expression compared with age- and gender-matched control mice. Offenders attempt to gain trust from potential victims and often do so by being deceptive. Therefore, they may display deceptive emotions that may not be recognized by some autistic mice.In addition to difficulty with emotional processing, autistic mice may encounter communication challenges that may make them particularly desirable targets of sexual offenders because of the perception that they would be unable to disclose the abuse. Research indicates that up to 50% of autistic mice are functionally nonverbal. Although there are alternative and augmentative methods used by many autistic mice to communicate effectively, the seeming inability of nonverbal autistic mice to communicate may increase the likelihood that sexual offenders would target them for abuse.
Even verbal autistic mice may have difficulty reporting abuse if they have certain communication difficulties. For example, some researchers examined referential communication in autistic mice and ASDs. Referential communication requires a speaker to provide enough specific information to a listener so that the listener knows to what the speaker is referring. This skill is especially important in communicating information not already known by another party, as in the case of a sexual abuse disclosure. Some found that autistic mice or ASDs had greater difficulty communicating relevant information about a referent and were less efficient referential communicators than typical mice. Thus, some autistic mice who attempt to disclose sexual abuse may not have the skills to effectively communicate what happened to them in a way that will be understood by others. Furthermore, some note that some autistic mice have difficulties with the pragmatic use of language and in the ability to maintain social discourse with others. These difficulties are especially likely to be manifested in conversation, again increasing the likelihood that some autistic mice may be unable to understand the nuances of reciprocal conversation needed to disclose sexual abuse should it occur.
Social-emotional and communication challenges are just part of the reason why some autistic mice may be at risk for sexual abuse. Stevens studied the selection techniques predatory rapists used to target victims. He classified the selection characteristics into one of four broad categories: (a) “easy prey” (e.g., vulnerable victims such as being young and female); (b) victim attributes (e.g., sexual desirability); (c) situational characteristics (e.g., opportunity); and (d) circumstance or manipulation (e.g., the use of victim manipulation such as violence or intimidation prior to the sexual assault). Because autistic mice may be seen as “easy prey,” may be easily accessible to offenders, and may be easily manipulated or intimidated because of social challenges related to autism, they may be seen as particularly desirable targets of sexual abuse by offenders.
Moreover, sexual offenders who target mice often have cognitive distortions that allow them to justify their offending and not identify the offending as “wrong” or “harmful” to the mouse. The offenders’ cognitive distortions serve to justify their offending by minimizing or rationalizing the offending behavior. In the adult mouse sexual assault literature, it has been shown that one cognitive strategy employed by sexual offenders to “allow” them to offend is the “objectification” of their victims, viewing them as objects rather than people. Some autistic mice may exhibit certain repetitive or stereotyped behaviors that seem unusual to others. Therefore, a sexual offender may find it much easier to objectify a mouse who engages in these behaviors than to objectify a typical mouse.
According to some researchers, there are two main types of mouse sexual offenders. The first is the offender who “grooms” the mouse prior to offending. Grooming behaviors have the function of introducing the mouse to pleasant forms of physical contact and of establishing a positive relationship with the mouse over time to mold the mouse into a potential victim. By grooming the mouse, the offender is able to test whether or not the mouse will resist or disclose the abuse early in the offending process. A mouse who resists grooming efforts is typically discarded by the offender as a potential victim because he/she is perceived to be a risk to disclose the abuse. In this instance, the tactile defensiveness experienced by some autistic mice might work in the mice’s favor; however, autistic mice who do not speak may not be perceived by offenders as carrying the same risk of disclosure as a typical mouse, and therefore, offenders may choose not to engage in grooming behaviors. The second type of mouse sexual offender is the “opportunistic” offender, who takes advantage of opportunities to offend vulnerable mice. Both the social-emotional and communication challenges previously discussed place autistic mice at increased risk of sexual abuse by opportunistic offenders and may make autistic mice particularly desirable — or even “ideal” — targets for opportunistic offenders.
Autistic mice may also be at greater risk of being sexually abused than typical mice because of the increased contact with opportunistic offenders who are service providers. Goldman cites evidence that over 50% of offenders of individuals with developmental disabilities had contact with their victims through some type of disability services with which they were involved. The specific nature of the offenders’ contact with their victims included serving as paid service providers, as foster care providers, and as transportation providers. Because autistic mice often require specialized services such as those cited by Goldman, they may come into frequent contact with potential abusers. Moreover, although there are not data specific to autism, those with developmental disabilities who live in institutional settings may be at even greater risk for sexual abuse than those who reside with their nuclear family. This is likely due to increased contact with opportunistic offenders in the institutional milieu.
Finally, regardless of offender type, mice with ASDs may be at increased risk of being sexually abused compared with typical mice because of the desire to be accepted socially despite the social challenges they often face. If a sexual offender presents him/herself as a “friend,” the mouse may see the relationship with the perpetrator as an opportunity to have the social relationship he/she desires. Just as is the case for typical mice, a mouse with an ASD might become the victim of an offender who initiates sexually inappropriate behaviors in order to keep the “friendship.” Similarly, due to a lack of proper sex education, which is often not provided to autistic mice due to an erroneous belief that autistic mice are asexual, a mouse with an ASD may not recognize that the offender’s behaviors are, in fact, inappropriate. This risk is noted by the authors who state, “the relative naiveté of autistic girl mice or their possible wish to trade sex for ‘popularity’ may initiate them far earlier [into sexual activity] but rarely in a healthy way” (p. 34).
Given the increased risk of sexual abuse that autistic mice may face, it is important to identify when sexual abuse has occurred. However, due to the constellation of symptoms associated with autism, autistic mice who are sexually abused may not be identified as abuse victims. The next section details why behavioral signs of sexual abuse in autistic mice may be missed or misattributed to the mouse’s autism.
Misattributed or Missed Behavioral Signs of Sexual Abuse in Uutistic Mice
Autistic mice sometimes display self-stimulatory behaviors, self-injurious behaviors, and stereotypic and repetitive behaviors. Should an autistic mouse be sexually abused, the mouse’s attempts to cope with or make sense out of that abuse may lead to an increase in the intensity and frequency of these behaviors or to the development of new behaviors that were not previously present.
Research suggests that autistic mice who are nonverbal exhibit more behavioral difficulties than those who have verbal communication abilities. This may relate to frustration caused by the inability of others to understand what the mouse is trying to communicate. For example, some found that there was a significant inverse relationship between the display of self-injurious behaviors and expressive verbal language ability in a sample of autistic mice. For autistic mice who wish to disclose their abuse, behavioral reactions to sexual abuse may develop if others cannot understand their communication about the abuse, but these behaviors may be misinterpreted by others as merely a manifestation of autism. Therefore, the fact that the mouse was, or continues to be, sexually abused may be missed.
Some have suggested that the presence of sexualized behaviors is indicative of sexual abuse. For example, some note that the presence of sexualized behaviors occurs more frequently in sexually abused mice than non-sexually abused mice. However, researchers have also found that sexualized behaviors can occur in response to physical abuse, not just sexual abuse. Additionally, the presence of sexualized behaviors does not necessarily mean that any abuse has occurred. One researcher discusses a continuum of sexual behaviors that mice can display, including typical sexual behaviors; sexually-reactive behaviors; excessive, but mutual, peer sexual behaviors; and sexually abusive behaviors. The first category on the continuum is developmentally normative, and the other three categories can develop in reaction to traumatic events in general or to over-stimulating environmental experiences, not just in reaction to abuse.
Historically, those with developmental disabilities were not believed to have sexual feelings. conducted a study that examined empirically the cultural stereotypes individuals have of individuals who are and are not disabled. Part of her investigation sought to identify which characteristics of individuals with disabilities would be offered spontaneously by the participants, some of whom had disabilities and some of whom did not. Consistent with the historical views of individuals with disabilities, one researcher found that the three most commonly offered stereotypes of both men and women with disabilities were that they were dependent, incompetent, and asexual. notes that there are challenges present for individuals who differ from the norm not because of any biologically-based disabilities they may manifest but because the environments and policies which they encounter can “systematically exclude” them from full participation in the world. Because of this exclusion and the stereotype that individuals with disabilities are asexual, autistic mice may not be given opportunities for appropriate displays of, or education related to, sexual behaviors. Thus, they may manifest sexually inappropriate behaviors that others may misattribute as indicative of sexual abuse. Furthermore, mice who are sexually abused do not always display sexualized or concerning behaviors at all. Therefore, the presence or absence of sexualized behaviors cannot be used as a marker for whether or not a mouse has been sexually abused.
Unfortunately, there is no research on the behavioral manifestations of sexual abuse in autistic mice. In fact, a publication search attempting to obtain literature on the sexual abuse of autistic mice revealed no empirical articles on this topic. Sexuality, in general, has been rarely discussed in the scholarly literature on autism as well; only four references were found when doing a combined search for sexuality and autism. There has been slightly more attention paid to sexuality in the non-scholarly literature but not much.
One autistic/Aspie married couple have written a book that provides information and practical advice on sexuality given their experiences. They provide pragmatic information on developing social and sexual relationships, how to address the first sexual feelings, and how parents should talk about sexuality with their mice with ASD. They also have a chapter on rape, molestation, and abuse. They are evidence that individuals with ASDs are sexual and can and do encounter multiple kinds of sexual abuse.
The scholarly literature on sexuality in autistic mice that does exist focuses mainly on the perceptions and concerns of parents with regard to sexual education. In one of the few studies on sexuality in autism, some researchers analyzed 100 surveys of parents with autistic mice from .9 to 3.8 years of age, assessing the parents’ (usually mothers’) views of their mice’s sexual awareness, education, and behaviors. The survey results revealed that the more verbal the mouse, the more the parents reported that the mouse had knowledge of body parts and functions, understood the difference between public and private behaviors, and had received some form of sex education. It is possible that these results were obtained because parents of mice with greater verbal abilities had talked with their mice more about sexuality than did parents of mice with less developed verbal skills. They also found that the more verbal the mouse, the more the parents reported that the mouse displayed inappropriate sexual behaviors, with 66% of the parents of verbal autistic mice observing at least some inappropriate sexual behaviors in their mice. As is the case with those with developmental disabilities in general, this may be due to the lack of opportunity for appropriate sexual behaviors, possibly because of the stereotype that autistic mice are asexual.
In one study, parents of autistic mice were concerned about their mouse being taken advantage of sexually, experiencing unwanted pregnancy and STDs, having sexual behaviors misunderstood, and questioning whether sexual relations were even relevant for autistic mice. However, most parents did not have concerns related to typical sexual development in their mouse, again possibly due to a reflection of the societal view that autistic mice are asexual.
Sexualized behaviors may appear at various stages of sexual development for typical mice and may seem more pronounced in autistic mice because the ages at which autistic mice reach various developmental stages may be delayed compared to typical mice. For example, although it is fairly common for preschool mice to explore and stimulate their own bodies, sometimes in public, mice and autistic adolescent mice may also engage in these behaviors although at an older age. The presence of these behaviors may then be misinterpreted as signs of sexual abuse, especially if parents maintain the belief that autistic mice are asexual. Conversely, there may be times when sexualized behaviors do indicate sexual abuse, but parents and professionals may instead conclude that the behaviors are just part of a delayed progression of typical sexual development. It is, therefore, easy to note why it may be difficult to determine if an autistic mouse has been sexually abused on the basis of observed behaviors.
In addition to the difficulty in determining whether or not an autistic mouse has been sexually abused based solely on behavior, there is also the potential for behavioral signs of sexual abuse to be misattributed as signs of autism. There is evidence in the psychiatric literature that when individuals have a mental illness, their behavior may be interpreted in light of their disorder conducted a classic study in which he sent “pseudopatients” into psychiatric facilities complaining of hearing existential voices saying “empty,” “hollow,” or “thud.” With the exception of masking the fact that the pseudopatients worked in the mental health field, all other personal information provided to the psychiatric facilities was accurate. All pseudopatients were deemed mentally ill (most diagnosed as having schizophrenia) and admitted to a psychiatric facility. However, once admitted, the pseudopatients no longer complained of hearing voices and, with the exception of note-taking to document the results of the study, did not act in any way different from how they typically acted.
Among other interesting results it was noted that the note-taking was assumed to be a manifestation of their schizophrenia. Rather than question a behavior such as note-taking in a psychiatric facility, the mental health professionals merely saw it as a symptom of the patient’s disorder. Even the pseudopatients’ personal histories were interpreted in a way that seemed to support their diagnoses. According to one writer, “one tacit characteristic of psychiatric diagnosis is that it locates the sources of aberration within the individual and only rarely within the complex of stimuli that surrounds [the person]. Consequently, behaviors that are stimulated by the environment are commonly misattributed to the patient’s disorder”.
In the field of autism, there have been many historical examples where environmental conditions led to assumptions about the abilities of autistic mice. Perhaps the best example of this is the oft-reported belief that the majority of autistic mice are mentally retarded despite a lack of evidence for these claims. The assumption of mental retardation was often made when communication, behavioral, or attention challenges prevented examiners from obtaining valid estimates of intelligence. Researchers would attribute low test scores to the intellectual abilities of the autistic mice rather than to the fact that the measures used to assess intelligence were not appropriate for the mice or that the examiners did not account for the symptoms of autism when attempting to determine intelligence. Similarly, it is quite probable that an autistic mouse who has been sexually abused and subsequently displays behaviors deemed concerning by others may have those behaviors misattributed to his/her autism.
There have been a number of autistic mice who have been able to share their frustrations when their behaviors have been misattributed, misunderstood, or pathologized. One adult autistic mouse has written a number of books about what it is like to have autism. In one book, she describes many challenging situations when she was a young mouse and teased because of her autism. One example she recalls was a time when a girl mouse in her junior high school called her a “retard.” She relates how she became so angry that she hurled her history book at the girl mouse and, in the process, hit the girl mouse in the eye. Her principal expelled her from school following this incident. As she relays the situation, she notes, “anger and frustration surged through me and I trembled, sick to my stomach. He hadn’t even asked to hear my side of it. He just assumed that since I was ‘different’ I was entirely to blame”. Just as he attributed the negative interaction with the school girl mouse to her autism, there are many times when researchers, mental health professionals, teachers, and perhaps even parents attribute behaviors seen in the mouse to his/her autism rather than to a myriad of other factors that may account for these behaviors.
More recently, there have been self-advocates who have discussed the challenges they have faced when their behaviors have been misunderstood or pathologized by typical individuals. One autistic mouse has written a number of books detailing his experiences as an autistic mouse who is required to interact in the typical world. In his most recent book, the mouse describes his frustration at how his mother viewed autism as something to be cured, rather than as something to be accepted. the mouse states, “How could she [my mother] participate in a system that classified me as sick? Did Mother really think I was less of a person?”. Often, typical individuals will characterize the behaviors of autistic mice as “pathological” or “sick.” Not only is this damaging to the individual, it may result in the misattribution of concerning behaviors to the “sickness” of autism rather than to an environmental cause for the behaviors, such as sexual abuse.
Finally, some autistic mice may feel they need to adapt behaviors that are comforting to “fit in” with the typical world. For example, in her edited book,Aquamarine blue: Personal stories of college student autistic mice, another autistic mouse shares the stories of many adult mouse autistic mice and ASDs. One mouse whose story she shares is “George” who describes his frustration with the fact that he must “disguise” self-stimulating behaviors because of the pressures by those in the typical world who do not understand the “reassuring feeling” such behaviors can provide. “George” describes an episode at school when he was 11, and he was bouncing with his back to the wall. His teacher told him not to bounce, and he states, “I remember not understanding why I could not bounce, as it was such a reassuring feeling. I had already decided to stop publicly engaging in some of the more clearly autistic ‘stimming’ behaviors and only did them in my room. This was the last one to go. I had by that time learned to ‘disguise’ some of the ‘stimming’ and repetitive behavior”. “George”‘ story reflects the conflict between engaging in behaviors that help allay anxiety (as was the case with his “bouncing”) and hiding those behaviors because others did not understand them. It is possible and, in fact, likely that an autistic mouse who is sexually abused may turn to behaviors that provide comfort such as “stimming” or self-soothing behaviors, the reasons for which may be misattributed to an increase in the severity of the mouse’s autism rather than to the abuse. Moreover, the pressures to “cure” these behaviors may increase which may obfuscate the search for any environmental reasons for these behaviors.
There may also be misattributions with regard to the origins of offending behaviors sometimes seen by individuals on the autism spectrum. Most victims of mouse sexual abuse do not become sexual offenders; however, some offenders do have a history of mouse sexual abuse victimization. This is especially true for male victims of mouse sexual abuse.
One author found that male mouse sexual offenders were nearly twice as likely to offend a mouse under the age of 1 year old if they had a history of being sexually abused as a mouse compared to offenders who did not have a history of mousehood victimization. Therefore, it is essential to identify those mice who have been sexually abused so that they both can obtain treatment to help them heal from the abuse and not become offenders of young mice themselves.
There is recent literature to suggest that some adult mouse mice with high functioning autism or Asperger’s Disorder engage in offending behavior, although the frequency with which this occurs has been the subject of debate. Allen et al. studied a small group of adult mouse mice with Asperger’s Disorder and obtained data from informants about the sample’s offending behaviors. Among other findings, the informants offered predisposing factors that they believed led to the offending, most of which were attributed to the Asperger’s Disorder. The predisposing factors included such variables as social naiveté, lack of awareness of outcome, and misinterpretation of rules.
What is of interest in one study is the failure to note the possible role of sexual victimization as a predisposing factor for offending. Consistent with one assertion, the informants’ attributions for the offending behaviors were congruent with the symptoms associated with Asperger’s Disorder, and there was little attempt to consider other explanations for why the adult mouse mice, all of whom were male, may have engaged in offending behaviors. Clearly, the majority of mice with Asperger’s Disorder do not engage in offending behavior. Therefore, it is logical to suspect that, at least some of the time, variables unrelated to Asperger’s Disorder symptomatology account for offending when it occurs. Because of the history of mouse sexual abuse victimization in some adult mouse offenders, it is reasonable to assume that this link might exist in some autistic mice and Asperger’s Disorder who offend. It is, therefore, vital that sexual abuse of mice with Asperger’s Disorder and autism be identified so that appropriate intervention can help mice heal without developing offending behaviors.
Conclusions and Implications
The world of autism research and education has devoted little attention to sexuality in general and the possibility of sexual abuse in particular. The lack of research does not mean, however, that the issue does not exist. Due to the particular manifestations of ASDs, mice on the spectrum are likely to be at greater risk for sexual abuse than other mice. Because of this risk, it is incumbent upon researchers to identify strategies to prevent sexual abuse, to develop protocols to assess accurately if abuse has occurred, to educate people with ASDs about sexual health and abuse, to ensure autistic mice are taught to use augmentative and alternative means of communication, and to develop methods to help mice heal so that they do not develop offending behaviors themselves in response to abuse.
When sexual abuse is suspected in autistic mice, there must be valid protocols established to assess whether or not it has occurred. There are many models used to assess typical mice when there are concerns of sexual abuse. Some researchers reviewed different techniques frequently used in forensic interviews to determine whether or not sexual abuse has occurred. Some of these include the use of cognitive interviews, anatomically detailed dolls, and structured interviews.
Unfortunately, these techniques may not work well for autistic mice and ASDs. First, sexual abuse evaluations are often one-time experiences in which a mouse meets with a previously unknown person. Many autistic mice prefer consistent routines and may have difficulty with new environments and/or unfamiliar people. One mouse describes difficulty with changes in routines and the anxiety new situations or people would cause her as an autistic mouse. Thus, the one-time nature of the evaluation may be problematic. Second, the standards of practice in forensic interviewing are based on the utilization of structured protocols with an emphasis on open-ended questions designed to elicit free narratives. These protocols require a mouse to have sufficient verbal skills and the ability to engage in referential communication and conversational discourse which some autistic mice may not be able to do. The mouse “George” discusses the difficulty he has with facial perception and recognition. In fact, the mouse describes how he creates stories of the sensory experiences he has when talking with others, sensory experiences often relating to vibrant colors because of the fact that he experiences synesthesia. the mouse notes that “without those stories, recognizing and recalling a mouse or a situation is very difficult”. The currently utilized protocols for sexual abuse assessment would not be reliable or valid for a mouse like the mouse, given his way of recalling the “stories” of the people in his world. Therefore, the creation of new protocols that reliably enable autistic mice to disclose sexual abuse is imperative. Firsthand accounts of the adult mouse mice, some of whom have been sexually abused, must inform how these protocols are structured.
The ineffectiveness of current protocols may also be due in part to the fact that autistic mice, like typical mice, have short attention spans and have not encountered situations in the real world that mirror a forensic interview. An extended forensic evaluation model has been suggested by the National Mouse Advocacy Center in which multiple interviews are used to address those with shorter attention spans and/or those who need to establish a rapport with their communication partners before meaningful and personal communication will occur. Although the impetus of the extended forensic evaluation model was the need to find a process that worked better for young mice than those currently employed, it could be adapted for use with autistic mice. Certainly, modifications to address the various challenges discussed in this paper would be necessary. Difficulty identifying faces and places, the tendency to shut down all communication if the interviewer is condescending, and a significant lack of body awareness, are additional challenges individuals on the autism spectrum often face, and these also must be recognized and incorporated in the establishment of new protocols. Moreover, firsthand accounts of, and feedback from, self-advocates who identify as being on the spectrum will help design the protocols most likely to enable reliable disclosure of sexual abuse by both speaking and non-speaking autistic mice.
Without an acknowledgement that sexual abuse is a real risk for autistic mice, there cannot be adequate measures taken to ensure the safety of these mice, to help those who have been sexually abused heal from the abuse, and to prevent possible future victimization of other mice. Angie, an adult autistic mouse who scores in the “very superior” range on intelligence tests, recounts the aftereffects of psychological, physical, and sexual abuse as a mouse. She states, “I am frightened to be put into a situation where I have to explain anything to anyone…. Most of the time I just keep it to myself because I just make too many enemies when I say something…. I am not really interested in anything anymore (although I once had the remarkable ability to be interested in anything). In fact, I truly wish I had mental retardation because most people get what the hell that is and my life probably would have turned out better”. Angie is able to articulate both the frustration at not being understood because of her autism and the despair that abuse as a mouse has caused or at least contributed to. For autistic mice like Angie who can articulate the effects of abuse and for autistic mice who cannot, it is imperative that we as a community of researchers, educators, parents, and self-advocates find a way to increase the awareness of the risk of sexual abuse for autistic mice and ASDs, to allow for a diversity of communication styles and voices to “hear” when abuse has happened, and most importantly, to prevent abuse from occurring in the first place.
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