22 Things a Woman With Asperger's Syndrome Wants Her Partner to Know

by Rudy Simone

  14

  Why soothing behaviors (formerly known as stimming) are good for her…and you

  Everyone has a soothing behavior that they are barely conscious of, whether it’s drumming your fingers on a table top, or bouncing your leg up and down in the cinema; we all do them. It doesn’t mean you have Asperger’s, but you probably can relate to this trait. Because anxiety is our primary emotion, it’s helpful for her to let off steam in this way, rather than keep that feeling locked inside. You wouldn’t want the proverbial kettle to blow.

  Your girl might rock while sitting or sway back and forth on her heels while standing, hum, finger flick, hand flap, twirl her hair around her finger, or a million other little things. Why? Because it feels good. Soothing behaviors at this level are harmless. I think the phrase “self-stimulating behaviors,” or “stims” as they have been called, is a misnomer. Although we might sometimes do them when we’re bored to keep awake, we mainly do them when we’re anxious and need to soothe that feeling.

  But if you repress them, they can morph into something else a bit more sinister. As an example, I used to make a clicking sound in my throat when I was a kid because I was nervous around other kids and too physically and emotionally repressed to do anything that required visible movement. I thought no one could hear it, like I had my “cloak of inaudibility” around me or something. Oh, they heard it alright. When my “friend” finally pointed it out to me (in a not very nice way) I was so embarrassed and horrified that I started doing other things, quieter things. First I started biting my nails, ripping off my toenails, sucking on my hair, chewing it, picking at my scalp. Then I developed eating disorders, anorexia and bulimia; things that chipped away at me, made me smaller, as if I wanted to be invisible or not exist. Perhaps if I had rocked instead, or found some other outlet, I would not have developed these self-destructive habits. “Replace don’t Repress” should be the motto here—for children and adults alike.

  If you are at a public event, say a dinner party and your girl’s hands start to curl under until the backs of her wrists are white, she starts rocking back and forth, fidgets with her hair, looks generally miserable, what do you do? Even before that, what do you think? Do you feel embarassed for yourself, or concerned about her? You and your girl should have an agreed-upon strategy if she starts to feel so anxious that she begins to engage in soothing behaviors in public. While a little bit of rocking is no big deal, my boyfriend knows the signs of anxiety and if he’s not too wrapped up in a conversation to notice, he’ll place a gentle hand on my leg and say quietly, “You okay?” Usually that’s enough to reassure me that I’m not alone and I can relax. If I’m not able to answer, he’ll take me aside somehow and ask me what I need and act accordingly, even if that means taking me home. If he really needs to stay and I really need to go, he’ll arrange for a taxi. I try to be the kind of girlfriend he can bring along on any outing, but frankly, sometimes I just can’t. Sometimes it’s better to say home than inconvenience your partner or make a minor scene.

  Your girlfriend, if in a similar situation, can go to the ladies’ room, or go for a walk, excuse herself for a while. But the best cure for this, is to surround yourself with people who do get it. Last time I went to lunch with a bunch of really conservative people, I felt very anxious. I told them I was on the autism spectrum and that I sometimes needed to rock or do this (demonstrated my finger flicking). It went in one ear and out the bloody other. “Oh, you don’t have to be nervous around us,” they said. The moment I hear those words, my anxiety jumps through the roof because I know they don’t get it. I wanted to ask “Why, aren’t you human?” but I was nice and I didn’t.

  Outings where the main activity is chitchat will be more difficult—dancing is publicly sanctioned soothing behavior, and so is rocking if you are watching live music. Skating, swimming, biking, any exercise will release anxiety and will be much more comfortable for her than sitting and talking (unless of course, it’s about her special interests). Of course, not all stims are born out of big anxiety; often, little displays are reactions to little stressors. But little stressors can become big ones if you say things like, “What the hell’s wrong with you? Are you retarded or something?” Believe it or not, many of us have heard these types of comments, from our parents to our own partners.

  I spoke at a school campus recently that had a whole room full of sensory toys to soothe and excite autistic kids. I didn’t want to leave it. All schools should have one. But your girl’s an adult. Maybe you can create a room in your home, where she has these types of things, from nature sounds to bouncy balls to things you can wrap up in. Pilates balls are great for bouncing, and stress balls and soft furry things that she can touch for comfort (she can take these out and about) are good too. Plenty of exercise will help strengthen her nervous system, as will holistic remedies, unconditional love, and of course, the pharmacists’ favorite, medications. As usual, meds should be the last resort. Do be proactive in helping set up your home to have a sensory room or corner, and do have agreements and cues for when you are out and about and she is getting overloaded. Stick to it until it becomes second nature. When you are someone’s partner you can’t take what you need of their love, their beauty, their intelligence, their help, and then when it comes to their struggles say, “Oh go sort that out, will you?”

  Partner’s words

  “After being with an Aspie for two years I find myself rocking and twiddling my fingers in the air…and not to the sound of my favorite rock tune—it’s contagious and comforting. Do NOT try to deter or stop your gal in mid-soothe, you will regret it. Join in or just allow her to follow through with her process.”

  15

  Jumping for joy… or bouncing, or twirling

  I have seen Aspergirls young and old, but especially young, who are incredibly stoic, their faces just don’t show much emotion. People on the autism spectrum have naturally lower muscle tone that NTs. (I think the low muscle tone contributes to a youthful appearance—it takes years before we get those rubbery, expressive faces that others have, and so we probably don’t wrinkle as early as NTs.) But the other reason for stoicism, is that many of us have been made fun of, by parents, teachers, peers, and siblings, for expressing joy and happiness in our own exuberant, uncool way. That can make us repress feelings of happiness.

  It is to be hoped that your Aspergirl, presuming that she’s at least old enough to be in college or older, has come to that wonderful age of self-acceptance where she lets herself express glee in a natural way. Those ways for us include pretty much everything you’d see a small child do. Laughing, clapping, making high squealy noises, giggling, jumping up and down, snorting, rolling around on the floor, even breaking into a happy booty dance. Ah, yes, we are a sophisticated bunch. This from a load of women whose average IQs are higher than well, yours, if you’re an NT. Sorry, but it’s true.

  She has behaviors that border on the juvenile, and weird. This is another reason we can make such good mothers. We can get right down with the kiddies when Chitty Chitty Bang Bang comes on and sing all the songs, then go to work and design rockets. This reminds me. This is another reason she possibly hates going to work. Everybody has to act so damn grown up! What a crashing bore. I once had dinner with Temple Grandin. We talked about Star Trek, the Beatles, and The Lone Ranger. There was a lot of giggling. All the stiff shirts were down the other end of the table, looking very Serious. The day my gold medal for Aspergirls arrived in the mail, I got so excited, I couldn’t calm down. So did I celebrate with a load of sophisticated friends over champagne and caviar? No, I spent the entire evening bouncing on a ball, watching and singing along to The Sound of Music. I’m 47 years old. Did my partner think it odd? No, he loved it.

  Some of the things we do to express joy are similar to our soothing behaviors, because our emotional cup is running over and our bodies simply cannot contain it—she might finger flick, flap her hands and rock when she’s excited, but you’ll know the difference by her exp
ression, words, or laughter. She might want to dance, twirl, recite, hum, skip. She might hop on a trampoline, play kids’ games (with or without kids), laugh and squeal with delight. Her giddy moments are few, rare, and treasured. She’ll get enough odd looks at the playground from other mothers, when she’s climbing on the monkey bars with your three-year-old, squealing and giggling. Does she get them from you?

  Do you think your girl is immature, or an absolute delight? Do you smile and tell her she’s cute and that she should never change, or do you scowl and say, “When are you gonna grow up?” I hope you get excited for her, perhaps even join in her joy. If you want to squelch her happiness, she really won’t want you around for long.

  These excitement behaviors might be okay to you in private, but if your friends witness them, how do you handle it? I’ve been called childish and immature when people have seen some of my little happiness outbursts. It hurts my feelings and makes me scowl. It also makes me feel sorry for the person who said it because they have lost the ability to play like I have. But I have learned, and most grown Aspergirls will learn too, when not to reveal too much of this inner child. It’s not like you’ll be at the company Christmas party and she’ll run downstairs with the boss’s kid’s dinosaur collection growling at everyone. She’ll wait till she’s alone or at home before she goes full-tilt boogie. It’s just harmless fun. If someone insults her, stick up for her and say, “She’s just happy.”

  This is the other part of my theory as to why Aspergians seem a bit young for their age: “neoteny,” which has been associated with autism, is the retention of juvenile traits that results in keeping youthful physical characteristics. To be young at heart is to be young of mind, which in turn should lead to more brain plasticity, openmindedness, and willingness to learn, despite our rigidity. Ah, we can be such contradictions. That’s what makes Asperger’s so damn interesting!

  Some women are perhaps a little too reluctant to grow up. If your girl is 25 and she looks and dresses like she is 13, that has social and sexual connotations that could cause problems. I’m talking about harmless fun, not delving into dodgy or risky areas. If you really feel she is jeopardizing her reputation and safety, then yes you should make these points known, clearly, privately, and with compassion. And of course she should deal with adult tasks, such as balancing the budget, dealing with her kids’ problems at school, earning an income, all the things a grown-up needs to do. She may be quite proficient in these areas, but if not, they can be addressed one at a time. She does need to learn to stand on her own two feet as much as possible.

  Partner’s words

  “I like when she’s playful. Her heart feels very much childlike and a woman’s at the same time, which I find to be rewarding. I don’t see anything wrong with it.”

  16

  Tongue-tied but not twisted…just because she can’t verbalize her emotions, doesn’t mean she doesn’t have them

  Even the most stoic Aspies have emotions, they just don’t process them in the same way or time that you, an NT, might expect. Does your Aspergirl have compassion and empathy for others? Without splitting hairs on the difference between the words (which changes depending on which dictionary you consult), I think that Aspies are some of the most compassionate people there are, when it comes to real crisis, real pain. We’ll rescue injured animals, help old ladies open doors, and rail against social injustice. We create and improve systems all the time, to make things better, not just for ourselves but for others, whether on a small scale or global.

  But in ordinary, day-to-day circumstances, we can seem quite the opposite—cold and unsympathetic. If someone tells your Aspergirl that their $200 shoes broke a heel after one wear, she might say something like, “It’s stupid to spend that much on shoes.” To her that’s a logical response. And if you say your car broke down beyond repair, she might say, “Well, it is old.” This is actually a clumsy attempt at making you feel better, i.e. the car served its purpose for a long time and you are lucky for it.

  But much of the time, it boils down to this: she is too sensitive and cannot handle emotional situations and upsets the way you have been led to believe that women should. Like our male counterparts, we get riled up by emotional outbursts or demonstrations. She may have so much empathy that it’s intrusive for her psyche to take on someone else’s emotional baggage, especially if, in her eyes, it’s trivial stuff. Or she may trivialize something in order to dismiss it and thereby avoid upset.

  During a fight, she may have said something highly inappropriate and, well, bitchy. When we’re overloaded emotionally or physically, we may say and do things we don’t mean, not to be cruel or play games, we’re just trying to nip an unpleasant experience in the bud and doing a botched job of it. And if it gets to be too much, she may completely shut down, and selective mutism—the temporary inability to speak—may kick in. (We’ll talk more about that in Chapter 17, on depression.)

  There’s also “alexithymia,” the inability to identify what one is feeling and therefore, not being able to express it or describe it in words. If you tell her something that upsets her, she might not know it at first, or know why, so she might say, “Okay,” when in actuality, she doesn’t really feel okay about what was just told to or asked of her. This can make for some sticky wickets and seeming contradictions. We have a reputation for “saying what we mean and meaning what we say,” but if we don’t know what we are feeling at the time, we can’t. If you’ve just asked her to go somewhere that you know contains a lot of things that will overload her and she meekly says “sure,” she probably doesn’t really want to, she just isn’t aware of all the feelings that just coursed through her veins in reaction to the question. A meek and quiet response is a clue that she’s conflicted. Talk it through and make the right decision with open eyes. Even older Aspies like myself have alexithymia. I know I’m feeling something, just not sure what or why, and that is one of the biggest causes of conflicts in my relationships.

  At the same time, she has an animal intuition that can be a little spooky and seem unfounded to others. In my experience, people on the spectrum seem to possess a sort of sixth sense when it comes to emotions. Just like the flicker of a fluorescent light that an NT can’t see, she’ll pick up on things that you (or others) are not outwardly telling her or showing her. While you might be smiling at her on the outside, telling her everything is fine, she might melt down or shut down, knowing somehow that something else is going on underneath. The worse thing to do is say, “You’re imagining it.” When someone tells us we are imagining something that we are sure we are feeling, it makes us either defensive or mistrustful of whoever’s saying it, so do be tactful. If you are the person in question, examine your feelings and be honest with her. Tell her what’s going on. If it is a third party, e.g. a friend, waiter, etc., say instead that perhaps it might be possible, but perhaps unproductive, to go with that assumption. People show us what they want for a reason.

  For her, being in an emotional situation can be scary—like being trapped in a pen with an untamed horse, one which is clearly stronger and more volatile than she is. But emotions too can be tamed, and I know of no better way than through discussion, awareness, and possibly some sort of mind–body integration exercises like yoga. Sweeping things under rugs means that the carpet’s going to get bumpy and sooner or later, someone’s going to trip. It’s better to face things as they come up, in a rational, supportive, nonjudgmental manner—this goes for both of you. Learn to broach subjects in a way that doesn’t upset her or get her defenses up. If you are angry, wait until you’ve cooled down so that you are acting not reacting. It isn’t just Aspies who have alexithymia; many people don’t know what they’re feeling half the time, or if they do, they don’t know why. Some reading, possibly therapy, and plenty of good mindful conversation will do wonders for helping her to express things like joy, sadness, anger, in an appropriate manner. And nothing beats unconditional love.

  If something is important to you and you nee
d her to express empathy, it’s helpful to give a firm, gentle reminder of that. You will probably have to do that much more than once, over the course of your lives together. Again, our lack of theory of mind means that we can place other people’s passions and feelings into the low-priority pile. If your treasured grandma has just died, her response should definitely be more supportive than “Well, she was 94.” If you miss your friends because your relationship has taken over all your spare time, her reaction should be more delicate than “They’re losers anyway.” Tact is the giftwrap on the package that makes us want to open it, and she must learn to wrap her words just a little bit, for the sake of your affection for one another.

  It is not just in fights or arguments that feelings might reach an uncomfortable level. Some of us don’t like to say or hear “I love you.” As much as she may care for you and want to know it is reciprocated, the words still might make her squirm and feel uncomfortable once uttered. Equally, public demonstrations of affection might make her feel embarrassed and exposed. Asking permission before grabbing her for a streetside smooch is probably advisable.

  Most of us express ourselves much better through the written word, or art, or music, when dealing with emotion. If you and she can write to each other, via email or text, or perhaps keep journal entries that you then let the other read, you might see that you are both much more sensitive and wise than face-to-face conversation between you reveals. The best advice I can give you is not to jump to conclusions where her feelings are concerned, because she speaks a slightly different language and some things might get lost in literal translation. But you do deserve to know that your partner loves you, so explain that to her—that sometimes even NTs need things spelled out.