How to love

Whoa. What just happened? How did it come to this? I have been valiant, loving, kind, focused, relentlessly hard working, and making great choices, for the right reasons. I have tended to the needs of my husband and he to mine. I have lived in a full-hearted bliss that comes from loving unselfishly and building a life with a man I adore, supporting his hopes and dreams. And yet, once again, there is a stranger in my bed. That stranger is my husband.

I am autistic. My husband of 25 years is not. We are both eccentric creatives. He loves me deeply. I love him beyond words. And there are times he is a stranger.

A while ago, we had a major and super-gross plumbing failure happen in the basement of our little home. Enormously expensive to have a professional fix. Since we are both handy and proficient DIYers, it made sense for us to brave through this ourselves. However, this project was really, really disgusting and my husband’s instinct was to lock the door, get a hotel room, and maybe sell the house. My reaction was to see it as an opportunity to finally improve our home’s 1920s entire plumbing and septic system with an environmentally sound design, adding value to our home with worry-free water and waste management system. State of the art and affordable, because I had foreseen this problem and had already consulted experts, read much, and purchased major components years ago. My husband, however, refused to agree to the plan back then, since nothing was broken. Now it was, so I was thrilled that my set aside plans had a chance of finally actually happening! Was that not the best option? Had I not been loving and kind, putting my husband’s plumbing preferences first for all those years? Was there a single valid reason to not implement my plan now? 

Being a loving and kind husband, he agreed to the plan and offered help. After all, he had no strong opinions about plumbing, besides that it work. Being a loving and kind wife, I protected him as much as I could from the clean up and remediation, as well as took on the vast majority of the work. His contribution would be to cut and connect the long spans of pipework that required two people. I would take care of the rest. 

The next months, from late winter until early summer, were spent with me spending every possible bit of time and energy on this project while my husband kept the business for our big band going. It was all coming together beautifully. Except when performing, I put aside my usual lipstick and pinup blonde look for the practicalities of crawling in spidery spaces and stinky mud. There was that moment when my new pickaxe was delivered, and I danced a little jig, because it was going to make my job SO much easier. That was the moment the absurdity of my reality kicked in. I was a big band chanteuse who crawled on pianos for a living. I was 115 lbs of autistic gumption, doing major plumbing of my own state of the art design, mostly on my own, and dancing in the driveway with a pickaxe, wearing my husband’s hand-me-downs. I was on the roof, armed with a large power hole saw, adding a new vent stack, deliriously happy and proud.

I am autistic. I am exceptionally good at thinking out of the box. I engage with projects with intense focus. This is not a bad thing. It can get things done. In fact, it is pretty fabulous. As long as you keep out of my way. 

I am not a “team player”. I am loving and kind, but am an extremely singular worker. I form a monogamous relationship not unlike love with a project. It is mine. I am its. We are in love. 

My husband understands, but not really. If I have to changed it or have it taken away I will mourn the loss of a loved one. I need time to grieve before I can move on. It is a very deep and personal loss. And it is real. it is not distortion, disfunction, or illusion. It is valid and real. It is an emotional connection he does not have. I respect that and adapt. When you are different, you have to adapt all the time. And I love him. But to me, he suffers from a deficit of emotional connection to projects. Except his lack if engagement is the norm. Mine is the one that is different. So that rich, beautiful engagement I experience is seen as a deficit. Really, it is not seen at all, until my husband decides to we must change a plan that includes my project and it feels like he has shot my lover. He sees it as a trivial change. To me, he is murdering my love. 

What is love? A mix of pleasures and emotional connection wrapped in trust. I trust my project. It is planned out visually, rehearsed in my mind, over and over in detail, before putting into action. It is orderly and beautiful. I can count on it. I trust it. And it gives me unspeakable pleasure. Love is blind. I see only beauty in my project. Sure, some moments may be unpleasant, but it doesn’t matter. It is an unconditional love. The order is beauty in a world of chaos. A world that assaults my wide open senses. Those wide open senses that can think out of the box, think creatively, logically, orderly, takes in so much sensory information, it can feel like I am falling off a cliff. But a plan, a project, is a map of a safe road, gives me a focus that gloriously keeps a world of too much at bay. My immersion in a project keeps me from falling off that dangerous cliff of confusion and overload. It is my Prince Charming, carrying me off to a well-planned castle. How could I not adore it or deeply suffer at its loss?

How does one love someone who needs plans and projects in order to survive? How does one build a life with someone when seemingly trivial changes in plans make a loved one fall off a cliff? You catch them. You offer a new map. Above all, you keep them safe while they mourn. You trust they can adapt and create a new map. Respect how upsetting the loss can be. The risks of that cliff is frightening. You might find other things frightening, like using power tools on a steep roof. That’s okay. 

It took a long time for us to figure this out. We were both so frustrated by how differently we saw thing, as I tumbled off yet another cliff to make room for my husband’s preferences. His unpredictable whims that brought such harm made me not trust him. I was not safe.

I do not have to always get my way. What I do need is a map. Give me a problem to solve and get out of my way. Once I am engaged, respect how deep my relationship with that project is. It is my map that keeps me from that awful cliff, and it feels glorious. I am having a love affair. Don’t expect me to give it up or change it without offering another option and respecting how hard the change is. It may be trivial for my husband. It is intensly important to me. I fear falling off that cliff. It is a horrifying experience. 

This deep engagement does not apply to most things I do. I have lots of casual project relationships and take great joy in accomodating my husband’s desires. It is only ones I have a deeper bond with that are hard to have changed.

Somehow, we figured it out, at least most of the time. Considering how clueless we are at what each other is really experiencing, we have created some sort of understanding. I want him happy. He wants me happy. Even if he sees my intensity as weird. Even if I see his lack of it as weird. He knows it is best to add his ideas in the planning phase. Once I am out of the gate, it is much harder to stop me. If he needs to stop me once I get going it is best to offer valid reasons and allow me plenty of time to create a new plan that includes his preferences. The change must be logical and not just a trivial preference. It is not worth hurting me deeply for a whim. No matter how the change is done, it is going to hurt. His priority needs to be to keep me safe through the sad confusion I feel at the loss, and know I will eventually find my way and be happy again. The very worst thing for him to do is push back or accuse me of not seeing his side of things. I get that he has a right to his opinions, but I am in great distress. His priority must be helping me through it as easily as possible. And knowing I am safe in a world that hurts is everything. It means I can trust him. I may be angry as all heck at him for making this change. But his understanding this means I can trust him. 

How do you love? Unselfishly, above all. You love who they really are, not who you expect them to be. How do I love? Autistically. I do not expect my husband to live by my maps. I cannot live without them. We trust and keep each other happy and safe by working with how we are different. Very different. Do we get it wrong a lot? You bet. As long as we try, it’s okay. Love is a mix of pleasures and emotional connections wrapped in trust. The rest takes practice and a million mistakes. And there are always projects. 

What I am trying to say is this: There is a lot of negative information online about how autistic people cannot make good partners. I am here to say that the mix of pleasures and rich emotional connection I have with my husband is real. In many ways, we are a perfect match. We have had a heck of a ride together with more happiness than most, and it looks like there will be more. It is not always easy and we get it wrong sometimes. Just like all other couples. He is a boatload of work and so am I. But I am autistic, so we created a few extra different rules of engagement and take them seriously, with the priority being to keep me safe in a world that is overwhelming. And we learn more all the time. Happily ever after is not a real thing. Happy in the struggle is true love. Rich, complicated, horrifyingly messy, and gorgeously sublime. Bring it on. Love is a mix of pleasures and emotional connections wrapped in trust. And, in our case, with passionate projects and sometimes strange bedfellows of 25 years.

Also, a warning. I give free tours of my home’s plumbing to all visitors. It turned out swell. Just as planned. 

 

 

 

 

 

 

 

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Merry and Bright

It is the morning of Christmas Eve, and I am working on building the New Years Eve performance, glad that the stressfest that stretches from Halloween to Christmas is almost over, and I have survived. When not performing, I find the changed social demands of the holiday very difficult. I neither give nor receive gifts well, don’t understand why everyone changes, and the extra hours of work on small things insist on overtaking the large. I am Scrooge. I can fake it, and actually love the holiday performances and music, and I do give gifts to children and close family. I used to do more. The tree and cooking and costuming and giving my all to those in my path, much more, along with holiday shows. And I would wind up in bed, sick, sacrificed on the alter of Merry and Bright. One particularly demanding year, I finished the 30+ hours of work, what it took to perform our New Year’s Eve Show at New York City’s famous Rainbow Room, already exhausted from the stretch of holiday weeks, went to bed…and didn’t, couldn’t get up for eight months. I don’t recognize the internal signal to slow down and pace myself. If there is a job, I do it. I simply work until done.

While I do many things very well, or give the illusion of that, I find it difficult to set needed systems in place to protect myself, or find ways to explain my needs. Friends who know me feel bad that I find holidays hard, so invite me over, to share their holiday celebrations. This is hilarious to me. Their attempt at being understanding is sweet, but attending a gathering is the exact opposite if what I need! Sometimes I go, because I love them, and it would mean so much to them. Sometimes I just cannot. Sometimes I attend so my sweet husband, Doc, can share in the fun, and it brings him joy to have me with him. He is fine with the avoidance of the falderal at home. We continue to focus on our joyful work and love. We need little else. He does not want me sick again. 

I am an autistic woman. I take in too much. It takes far more for me to maneuver in the world than most people. My sensory system reads every image and sound in the environment all at once, at the same level as the person talking to me. I am a sensory athlete. I fight with incredible focus to stand calmly and hear what someone is saying while the tsunami of other signals overwhelm me. I smile, act sweet, and share simple thoughts. It is hard to think and talk then. So I smile or babble boorishly, self absorbed, instinctively protecting myself from all the too much. It hurts. And I do it because I love my friends. It makes me happy to see them, but it comes  at a price, and I often don’t have the extra to spent. I watch in wonder, as friends maneuver in joy, relaxed and commune. I am in a pool of swimmers and can’t swim. 

Autism is invisible and hard to relate to. It is not just a more intense version of what is more commonly experienced. It is a different experience. I understand. It sounds like I just don’t want to do things, am an introvert, or have social anxiety. It is not psychological. It is neurological, genetic, giving me gifts and challenges in turns. It is my blessing that comes with a price, and I must pay that price or suffer the consequences. It is so very sweet and funny, as I watch all the swimmers, enjoying their happy fun, splashing in the pool of holiday frivolity, and they see me, love me, and want me with them. I say I can’t swim. So, with all love and great caring, they either feel sorry for me, or throw me into the pool saying it’s easy and fun. And I drown. 

If I could give the gift of sharing my world, my beautiful, crystal, pure world of my true Merry and Bright, my beautiful sensory experience, intense love of the entity you are, my hyper-focused calling and ability to find logical order and detail, if I could have you taste all sound, see when touched, and understand what it takes to shut out all that amazing input so I can see you, make you happy, listen to the small talk and acknowledge the unwritten social script (whatever that is). If I could give you that, oh, how much you would love it! It is such a beautiful thing! Because, where I am, who I am, is merry and bright and good. I am part of humanity, and so part of you. And I choose to make that part goodness. I am a sensory athlete. I am a social marathon winner. I am a holiday olympiad. And I do not posses the natural ability to swim in the holiday pool. So it is hard, if sweet, to be obligated to jump into the pool. I know it makes you happy when I do. And I will smile and splash, because I want you happy, and I struggle to not drown. And sometimes I drown. 

If I could have my friends give me one pure gift, it would be to have them remind me to take care of myself, and that they look forward to seeing me in the new year, or at a show when I am performing. They would be happy for my joy of being alone. They would understand it is luxurious joy, not depression, in the sparkling bright solitude. There is always social media for reaching out when I can. Let me avoid what hurts me, if you love me. If I am part of humanity, you should love me, correct? For that is the true one message of the holidays, if I have that right. To love all humanity. And, oh, I love you. Beyond the Merry and Bright. Merry Christmas, my loves. May you be Merry and Bright. You are much more. May you know this and see what I see in you. Have fun in the pool. I’ll be ready to wrap you in a big fluffy warm towel when you are done. And, oh, won’t that be nice, too! 

 

Dancing with Light

I am back home, curled up in my big chair, after traveling across the country to perform my new show “Blissfully Being”. I never travel alone. I don’t have any kind of fear or anxiety. I love travel and I love time alone. I have buckets of gumption and would put my stubborness up against anyone’s. I fear very little in life, really. It is just that my wide-open sensory processing takes in EVERYTHING until it then becomes nothing sometimes, like too many colors mixed together, until left with a bucket of muddy black mess. Light and shadows play tricks, dazzle me, thrilling me, making me want to dance and sing, until they appear almost to dance, too, and sing so loudly in beautiful compositions that it becomes a struggle to navigate. Streams of light upstage architectural design. Shadows mask edges of doorways and corners. As I absorb everything, it becomes an exquisite nothing. So the execution of navigation, communication, and planning the next action becomes slow sometimes. I can do it, fabulously at times. Other times, not so much. But, I am stubborn. Usually, I am with Doc, so I simply take his arm, focus on him, letting him navigate. Even without Doc, I have the advantage of being a small pleasant woman, so can touch a friend’s arm as I walk, without them ever knowing they are trailblazing for me. The thing about light is it shifts as I move, changing all that I just thought was there into something new. It is only after years and years of questioning how others saw things that I learned that it is truly not what I see. I used to think that everyone thought the beauty of a chandelier was the way the light streamed through the prisming facets, streaming a flood of light in a room until it bounced off the walls, filling the room with angled rainbow beams. I know now that you probably don’t see that. I do. I am neither exagerating or trying to seem like I have a superpower. In fact, it seems silly to tell you, but maybe you might like to know. Maybe you would find this information useful in some way. Maybe you see this way. I like my rainbow better, I think, than the chandelier most people have described they see to me, but it can make it hard to have a conversation or find a pencil. So I don’t navigate well all the time. Fortunately, I am graceful, with a good helping of dancer’s genes from both parents. I can step off a curb that surprises me and, with a wiggle and a toss of my hand, I think I just look like I am having a good time. At least I hope so. Please, don’t inform me otherwise if that is not the case and I look like a flightless bird’s failed attempt at launching itself. Is this exquisite sensory, being a kind of occular equivalent of the Princess and the Pea, and experiencing so much beauty along the way, is this an extraordinary ability or is it disability? It is both. It makes me expressive and artistic and brings a visual intelligence that gives me talents in certain important ways. But it also rules what I am able and not able to do. And now that I may have somewhat explained the visual challenge, add all the other senses, except taste, which I think is pretty much the same as for most people, except for having great taste memory, a handy thing for any ad-lib cook. Sound, touch, smell, are heightened or cross-signalled to me. But that’s a different story, because I want you, if you don’t see the way I do, to just understand that right now, what it takes to be with you or why I may not be with you. A sweet party planner may want to meet for lunch, to discuss an upcoming event. It is important, I know, and enjoyable. But the cost is high for me. To smile and eat and think and plan, while the lights and shadow, and, yes, noise, upstage everything. But it can appear uncaring and sometimes unacceptable to refuse such a lunch meeting. It is enjoyable and productive, but exhausting, even painful sometimes. It takes a lot to sit there and “pass” so others are comfortable. It can hurt, physically. If I say something about discomfort, I could just sound like a high-strung diva, needing things a certain way. This is not the case. This is, I am finally comfortable with the word, disability, enfolded in ability. An invisible disability that rules my life. That is why performing is so wonderful, with the spotlight blocking all other light, and rehearsed things take less effort than real-time thinking while processing all I am taking in. I am sure there are countless ways we all experience life. Some dear friends are hypersensitive in emotional ways. I am not. Some are more challenged by what their senses don’t pick up on, or what they don’t feel in an emotional way. These are real and can be debilitating and, yes, advantages, in turns. We all have such things, just different things. Hypersensitivy is mine to own, and it sometimes owns me. It is unusual, yes, and invisible, so you can only begin to understand and accomodate me, allow me and those like me, the comfort in life you enjoy, if I tell you. So I write this. I have committed myself to express all I can, through my new show, through my bit of rambling writing, to add my experience so we understand better, so we can put all this invisible info to use, so we can accomodate, and teach children in ways they can learn, include people like me in less challenging ways, and, well, just add to the good heap of understanding each other’s humanity. Share who you are. Never be ashamed. You are fabulous, just as you are. We all are. It’s that simple. 

Love and Autism

I have a new show! I am so excited! A one woman cabaret performance I have created to share my story in a way that suits me best. On stage! Songs and storytelling, and all my heart! 

 

But there is a bigger story to share. Isn’t there always? I will be debuting this show at the Love and Autism Conference in San Diego Oct. 8-9. Join us! I cannot wait to meet some of the amazing speakers and friends! I am also booking this show for the general public, for I am, after all, an entertainer, and in a unique position to share perhaps a little bit about autism in an entertaining way. You can find out about those shows on our band website, www.docscantlin.com Or to contact us for booking! It is a beautiful website, lovingly created by the Richard Zampella, son of Dr. Arthur Zampella, the doctor who diagnosed me as a child. Since it is our professional website, one that party planners and clients view, I felt I should posting avoid anything to do with autism, even though it is public knowledge. So I felt cold and fake, trying to post in a more businesslike way, and that doesn’t work for me in the least. It was so stressful, like all the years of hiding and faking when autism was not something one discussed. But now I am finally putting my whole self in a show, and including it on our website. And I feel complete. I go into a bit more detail about this here. So now I can say and be myself! This is a VERY big thing! 

My new little show is performed with three musicians: piano, bass, and violin for all public performances. I am also offering limited performances to worthwhile groups by singing with a digital music track when musicians are just not feasible. Since there is only so much that can be shared in the limited time of a 1 1/2 hr show, I will be using this blog to fill in my story, respond to your lovely comments, and to answer as many questions as I can. 

So, off I go to rehearse and to live, and can’t wait to share so much more! All the different me’s have finally gathered, and I will no longer divide the branded me from the real me. Doc is thrilled. Life is simple. And has become more blissful than ever! 

 

 

A Gentle Activism

I am tending to things I am good at today. Gloriously, creatively, and with great abandon. I do this with tremendous satisfaction, living my life in a sweet, gentle way, working hard to keep things humming. And life, my little world of singing and loving and laughing with Doc is a good one, and worth the care I put into it. I shall, once again, confirm my talents and blessings and feel a sense of place and complete. I am a kitchen champ, a fix-it wiz, and artsy as anything. If I can see it in my highly visual mind, I can usually make it in real life. There’s a running gag for the people dear to me, after receiving yet another bit of handy info or solution from me, to say, “How come you know everything?”, because I am just really, really good at lots of common sense things. I sing, if you can call the party-trick thing I do for a living singing, and experience not the slightest stage fright. I am a seasoned, confident, professional entertainer. I am just as complete and at home on a stage as in my little cottage hideout. I am successful in what my personal definition of success is. Until I am anywhere else but at home or onstage. Then, I am disabled. As an autistic woman, the sensory effort to navigate a trip to the store can put me in bed for a day, and throw me off my game for longer than that. If that trip also involves conversation, I morph into a childish chatter often inappropriately intimate or naive, unless I am rehearsed and scripted. I just cannot manage all I am taking in and so find it impossible to clearly think what I am to say back. My thoughts may be intelligent, perceptive, and complex, but I lack the ability to share them. There is simply no other words for what I am experiencing but a sensory onslaught ranging from extreme discomfort to unbearable pain. When does a limiting inability become a disability? When every plan and strategy in life, every common life experience, every moment, all plans, everything, who I am, and the choices I make, must be in keeping with the way I process the world around me, and limits me. I am not kooky because I want to be. I am kooky because I have to be. I must move certain ways to self-regulate. I can access the world at large only in a limited number of ways without hurting myself. And the outside world gets noisier, buzzier, beep-ier, faster, flashier, and chattier, all the time. If I possess one masterly skill, it is to hide what I am profoundly experiencing.  How do I communicate what I feel is my responsibility to reveal? How do I add my experience to aid in the understanding? As an autistic woman,  communication in the usual fashion (whatever the heck that is) is not only the hardest of things, but the conversation and building of community in itself makes for a chaos of chattering distractions that are my kryptonite, whittling away at my hard-won and valued skills, skills I need to survive on a daily basis. Why open myself to such things, when life is so very sweet without it? Because all autistic voices are needed in order to build a better understanding of what autism is, and improve the quality of life of autistic people. Our experiences are diverse and invisible and limiting unless the misunderstandings and obstacles are removed, skills supported, and access ensured as a right of valued members of society. I am one of the highly fortunate ones, an autistic adult with great systems in place. I am a happy autistic and that is no oxymoron. But it is, unfortunately, a rarity. What could I, and so many other, achieve if the boundaries of misunderstanding, assumptions, and compliance were removed? What if it was okay to request certain accommodations, or to not need to request at all? I dream of a world where I could turn to someone, someway, to learn things, besides just teaching myself. I dream of a world that just plain didn’t hurt so much, needlessly. So I shall continue to do this rather hard thing of adding my voice, my autistic experience, in my little way. Because all voices are needed, including those who cannot manage the team effort and strategies of the larger autism activist culture. Simple stories, life experiences, told authentically,  are activism, too. A gentle activism, in keeping with a gentle, sensitive heart. Parables have been the choice of many wise and holy world changers. Maybe I could add a bit, too.

One Pure Thought

We are in the voluptuous days of early Summer now, here on the Chesapeake Bay. Damp green smells. Sun sparkled dapples paint crowded leaf growth. White and green, light and shadow, all through a filter of sugary golden light, and the sweetest flavors of air. Not really a smell, but more a seasoning to the other smells, a tasting, really, of air full of buzzing fast growth of all living things, a vibration to taste, like fizzy champagne. Birds. So many birds, thriving in the lush greenness of the trees, high grass fields and little beach cottages, rolling down to sandy paths and the bay. It makes the busy struggles of the Washington DC area melt away. It is a treasure box of a place, my little home, though I am sure less precious to the outside world. It is our hideout, away from the ballrooms where we perform, and the overture of songbirds and surf are pure bliss. And Doc snoozes a bit late, as musician often do, relaxed and safe and loved. He will wake laughing and the first words he will say will be silly flirts as I bring him morning coffee. After the songbirds, the next song of the morning is Doc’s long moaning stretch, the coffee stretch, before he finds words. Fluffy sounds of shifting feather pillows, and the coffee moan stretch, just loud enough to ensure delivery. Then laughter, little chuckles of playfulness, and flirty teasings, the first banter of the day. This time of year, the flirting will be mostly about toes, for I am barefoot now, and Doc takes a comical delight in the polka dotting of cherry paint on little pale toes, before they disappear into the shoes required for day’s work. Toes and songbirds and shifting fluffy pillows, and focus shifts to hot creamy coffee and the objectives of the day: clients, musicians, music, and running business and too many repairs. Too much to do, and fast, for that is always life, and some things are hard and not fun. And we work long hours to do such things, to earn our keep and create worth and meaning in what we contribute to life. Then, as all do, we collapse into sleep and our dreams. So, as coffee is finished, list making starts, and toes and songbirds shall fade from focus. And the pure simple pleasure will turn to the dignity of work. But right now, this sweet summer morning, drowsy Doc stretches. And all is bliss, and tomorrow morning will be bliss again, for I shall not think complicated thoughts yet. I shall simply be, blissfully be. One pure thought, right here, right now, of the beauty of this sweet summer moment. Time for delivery of coffee in bed, which will rapidly become the complications of tasks. I shall do those things with much pleasure, proud to greet the challenge of the harder bits, before sleeping and dreaming of waking again to one pure thought: Summer Bliss. 

Photo of my little summer garden, overgrown from rain, and waiting grooming. Putting my shoes on now.

Pretty Betty

Pretty Betty. Pretty, pret-ty, PRET-TEEEEEE BET-TEEEEEEEE! Those are the words that made me cry most when I was a child. It was not a compliment, for it was always wielded as a weapon by powerful siblings. Pretty Betty. It was said with meanness and great momentary childhood hate as each child carved out their place in the universe. And I cried. Pretty Betty. It made me cry and feel ashamed of all I was, and I could not figure out why they would say such a terrible thing to me. What did I do? How do I fix it? And, if I was pretty, wasn’t that supposed to be a good thing? It was so confusing. What I did know was that, obviously, being Pretty Betty must be a terrible thing to be, and that I was terrible and offensive to be that terrible thing. 

Pretty Betty. Most of the time, I was not teased at all. Most of the time I was protected, helped, or left alone. I was autistic and I loved being alone, that glorious place where I could just be, experimenting, experiencing, and making order of things important to me and no one else. Alone was where life was so beautiful and not confusing. But I lived in a home with a brother and two sisters, and I wanted to play, at least sometimes, and they played by rules that I didn’t know. They enjoyed a banter I did not understand, shouting and laughing for mysterious reasons. I could not figure it out, and I felt like I was very stupid. But they never teased me for things I could not do. No mention was made when I struggled with speech, or cried in the car from the noise and the smell, or when I rocked for hours, or banged my head, hoping to numb the pain of overwhelming sensory input. Nothing was said of the things that made me very different from other children. My offense was being Pretty Betty. 

They made the rules, those powerful children, rules I did not understand, and I cared little to follow those rules. They were noisy and mean, and enjoyed being mean, and I knew mean was not a good thing. I felt stupid for not understanding why they enjoyed their play, but I felt secretly smart for knowing better. So while they played, building their world of forts and games and one-upmanship, I built a different world. And my world was pretty. I moved precisely, dressed in costumed ways, hiding under a hat at times, playing dress up, putting on scripted shows dancing and singing. I walked on my toes, as if in high heels, and spoke each word in a high pitched, singing voice, swallowing in between words. I lined things up to make order of things, and because it was beautiful. I stacked things, too, because I found that took grace and calm skill to do, and the calming was beautiful in a chaotic world. I made things, drew things, and loved pretty things. I was upset when rules were broken, the real rules, not the ones made by siblings in play. I must admit, I was an awful priss, and you may have found me not your first pick at the playground. 

My mother taught me I was strong, and that I could do anything, and advised that I do it my own way, or, at least what she considered my way. As mothers do, she looked for the strengths and talents in each of her children, in hopes of nurturing those while discouraging flawed behavior. She never saw my behavior as flawed, only different. So she nurture a different path for me. Mine was not to be one of academia or business, though she excelled at both. Mine was not to be of networking or social change, like my father’s either. In her strangest child, she saw…pretty. Not that I was that physically beautiful, for I was not, but because I created an illusion of pretty and dwelled in it. As my sister would say, I wasn’t pretty. I did pretty. And I was good at it.

In the late fifties, being pretty was considered a valid life plan. A quiet, well bred, pretty girl was assured a good marriage and protection. Charm schools and finishing schools were acceptable training for that purpose. The plan was that my bright and boisterous siblings would be expected to make good grades, go to college, and assume careers of their choosing. They were disciplined, scolded for bad grades, reminded to do their homework. I was treated gently, given art classes and cooked with my mother, dressed ever-so-pretty, but little was expected from me in school. I was never going to fit in, so my ability, my assumed one asset, was encourage by my parents and pointed out deficient by the children. Pretty Betty. Because you can’t be other things. Pretty Betty, because you will never be anything more. Pretty Betty. Because you are simple and slow and do odd things all the time and will never be our friend. Pretty, pretty, pretty Betty.

Was this a bad plan? Maybe not, at the time, for there were few better alternatives my mother saw for me. I had talent performing, which was doing pretty things in a more public way, and my talents in painting, but I did not possess the skills to make a career. I was good at all traditionally feminine and domestic arts and that was considered of far more worth, as an added bonus to offer some potential husband. I was not expected to take summer jobs, like my brother and sisters. I was expected to never hold a job at all, except maybe modeling or acting, being professionally pretty, if that was my choice. I did not feel controlled in my path of pretty. I felt saved. And that I had nothing else to offer. 

In the late sixties, I became what my mother wished, pretty. My big brother made sure the boys did not try to take advantage of me. My older sister became a rebel, loud in her anger and protest, and I admired her strength. Her friends would comment how pretty I was, and sweet, and my sister would say, “Yes, but she is so simple.” I would cry, again, pretty Betty. I like to think she was trying to help when she was mean, pushing me to be more like her, or just to be more something. At one point, I had saved my allowance for many weeks, dreaming of crocheting a lacy shawl, pure white angora, like a cloud, that I could wrap myself in and move as if with angel wings. I designed in carefully, and spent more weeks crocheting it. It was the most beautiful thing, original, exquisite and precious to me. I was almost done when my sister came home from college to visit, walking into my room, picked up my beautiful cloud with two fingers, repulsed, saying, “What’s this?”, as if it was feces. She tossed it and snapped, “You think you’re in heaven!”, offering no other explanation of why I had done something wrong. But I obviously did, for she knew the rules, and I never did, and I was obviously too simple to know. I never finished that shawl, never worked on it again. I never crocheted again. I threw in into the back corner on the floor of my closet. Pretty Betty. 

I fell in love with a man who loved me for me, not Pretty Betty, and we lived a life as hardworking farmers for too few years. I was happily free of Pretty Betty. I found I was really good at so many things, and maybe not so good at others. That is what happens in life, to all of us. I became a mother, then a widow, with a son to support, and many, many, many more things. And still, of course, autistic. So I had to do some things differently, and I figured it out best when I got the least advice from someone else. And sometimes the best thing for me to be was Pretty Betty, even when I didn’t want to, and certainly was not respected for doing so. I am happy to say I did it on my own terms, because it is honestly a part of me. I own it. I am comfortable doing pretty, gift wrapping my many-yeared skin. I have paid the dues and own it. 

So it goes with all strengths that are burdens as well, as trite as they may sometimes seem. Our experience is ours alone, and the importance of some things in our lives ours alone. Our joys often hurt when we allow others to own the rule book. The important thing is to own it and do it your way. We each make the rules for ourselves. Own it. Own it and play to whatever strengths you posses, even when others see it as awful. It is, you know, your strength, awful and wonderful, for that is how such things work. It is the same with each unique thing about each of us. My autistic friends know this so well. Disabilities and abilities shift in what they bring to our lives, and how we choose to perceive them. And life fits just right when we make the rules for ourselves. It is that simple. And pretty nice. Own it. Oh, and give all you have every step of the way. If you have nothing else to give, give love. Might be a simplistic message, but, that’s fine with me. I own it, and that is pretty swell, indeed.

  

 photo at Gadsby Tavern with my husband, Doc Scantlin, leading the Imperial Palms Orchestra. I am singing a tango. Under a hat, of course.