Happily Ever After Starts Here

By Jill Wilbur Smith

Last Labor Day weekend, we attended my niece’s wedding in Michigan. It was a beautiful affair, held in a barn on property that’s been in my brother-in-law’s family for generations.

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About three hours into the evening, my sister came up to me looking concerned. “Emily just got upset and said she was leaving,” she said. In the old days, I might have gotten upset myself and frantically looked for Emily to try to calm her down. But on this night I didn’t.

“She’ll be OK,” I told my sister. “I’ll check on her in a while. Don’t worry. Go enjoy your party.”

Then I got another drink and continued to mingle with family. About 30 minutes later, Emily emerged from the house. She had found a quiet corner in which to sit and recharge. She came back to the party happy and calm. I was glad that I hadn’t run after her.

I’m trying to put an appropriate amount of distance between my daughter and me. I don’t mean that I’m abandoning her. I’m simply working to let her find her way. Because I’ve learned that the way she navigates out of painful situations is rarely the way I would guide her.

That’s difficult for me. I always want to help. To soothe. To be the one to listen and make all of the bad feelings go away.  But that’s asking too much of myself. And expecting too much of her.

So, I’m trying to give Emily the space she needs. To understand that she doesn’t always enjoy being in a throng of people, even if those people are family. That the way she connects with others isn’t the way I connect with them. Her happy looks different than mine.

Earlier this summer we attended the wedding of one of my other nieces. It, too, was a joyful affair attended by almost every member of my extended family. I could have danced all night, raising my red solo cup in song and toasting the happy couple.

As much as Emily loves her cousin, the evening was too much for her. But unlike the year before, Emily didn’t get upset and disappear. Instead, she calmly said to me “I’ve had enough for tonight. I’m going to go wait in the car.” I gave her a hug and told her we weren’t ready to leave, but that we’d join her when we were.

I gave her the space she needed, but I didn’t sacrifice my own needs in the process. And it was OK. No drama. No stress. No guilt. Just two women defining happiness in their own terms and accepting their differences.

That might seem like a small thing, but for me it’s significant. It’s taken me a long time to accept that the things that make me happy aren’t always the same as the things that bring Emily joy. That reality used to make me sad. I felt that Emily was missing out on an important part of life. But I now recognize the fallacy of my belief. I’m beginning to accept that her happily ever after, although different than mine, will be happy. I confess that I still have my moments of longing, but it’s a start.

 

 

“Get a Clue”: An Aspie’s Need for Specificity

By Emily Smith

The following is a compilation of several phrases that Aspies hate, in no particular order:

  • Be nice.
  • Try and “wow” me.
  • Do something.
  • Just make an effort.
  • Get a clue.

Here’s why we hate them. At least, here’s why I hate them. I’m guessing that a lot of Aspies agree with this designation of hatred, but for now I’ll speak for myself.

Consider the following. How many different things can each of these phrases actually imply? One person’s nice is another person’s nosy, so what kind of “nice” am I supposed to be? Even the most concerted effort can be useless if the approach is wrong— so how should the approach look? The “wow” factor is going to be unexpected and indescribable by nature, so how is telling someone to embody “wow” anything but useless? And finally, my personal least favorite. Get a clue.

A clue about what? How am I supposed to know? I hear that phrase as “hey! Learn what I’m thinking about, right now! Just go ahead! Learn that particular thing, with zero prior knowledge of it!”

Is that really supposed to be easy for me? How is that easy for anyone? Are there big blue pawprints on said “clues” that I just don’t see?

In a lot of cases, it turns out that there are. Social cues provide context that NTs have a lot less difficulty decoding and translating into corresponding actions. Aspies don’t have that, even if we learn the rudiments of it. If you’re frustrated with me, for example, I’ve learned to pick up on that. I pick up on that very much. It distresses me. I do not want you to feel frustrated about my behavior. But unless I’m told what the problem is, I probably don’t know what to do about it.

In the Harry Potter universe, there’s a device called a Remembrall. It’s a little glass ball that fills up with red smoke when its holder has forgotten something. The fatal flaw of the Remembrall is that forgetful people, who need its reminders most, don’t always get what they need out of it. As the absentminded young Neville told his classmates, “I can’t remember what I’ve forgotten.”  That’s more or less how I feel whenever I’m told something action-oriented, but vague. I’m glad to know I’ve failed to do something, but I have no idea what the something was.

Take this for example. I’ve been living at home for a long time now, which isn’t exactly a picnic for any of us, but for now it’s working. I always did chores and errands around the house when asked, so for the longest time I didn’t understand that my parents felt unappreciated. My demeanor still appeared ungrateful. After a year of miscommunications, in the messy aftermath of all our bottled feelings exploding, we finally landed on the idea that adults do chores without being asked.

That’s pretty dumb, right? Rock-stupid obvious. Most people my age would understand that after a year of living at home, or living anywhere with other people. I feel bad about not having known that, but I really just needed to be told that this was an ongoing social expectation. So I finally learned that, and I fixed it. I even found a part-time job and I’m actually moving out soon. I’m doing what others tacitly expect of me. I remember.

If you’re an NT who gets bummed out by Aspie behavior, try and take this with you. The way a lot of us tell people’s feelings is kind of like a Remembrall. Are we cool? Okay, Remembrall’s clear. Are you mad? Frustrated? Did we forget to do something? Red smoke. What’s it for? I don’t know. Panic, panic, panic.

Help us not panic. Remind us what we forgot.

How I Sometimes Forget That My Life Includes Autism

by Jill Wilbur Smith

Sometimes I forget that I’m the parent of someone who has a disability. Call it denial. Call it hope.

On good days, it’s easy to believe that I’m unaffected by autism and depression. On good days, it’s easy to think that my world is just like everyone else’s. On good days, it’s easy to forget.

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Then a bad day comes along, as bad days are wont to do.

If the good days have been many, strung together in a brilliant and dazzling display of calm and joy, the bad days hit hard. Crashing down on me with an unexpected force. Taunting me. Don’t forget, they tease. Life isn’t meant to be easy.

Rationally, I know that bad days aren’t reserved for families who live with disability and depression. Bad days aren’t particular. They happen to everyone.

But in that irrational, emotional place inside of me, they feel vengeful.

I’ve had a lot of good days in the past two months. I need to remember that. My mother and sister joined us for Thanksgiving. I got a promotion at work. I had a joyful Christmas spent quietly with family. I celebrated New Year’s by kicking in the ass the dark times of the past 12 months, hopefully thinking a new year will mean no more bad days. Silly me.

Maybe that’s why I’m especially saddened by the day that occurs only 10 days into 2014. What makes it a bad day is a confluence of events that might not be troubling had they all happened separately.

I’ve had an especially busy day as I transition into a new job. I’ve mostly ignored text messages from Emily in the afternoon indicating that she’s struggling. I hope that by the time I get home the storm will have passed and we can have a quiet evening. I’m at the end of my emotional tether.

I walk into the house to find Emily’s bad mood hasn’t passed. In fact things have escalated into ugly confrontations between her and her father and sister. They, too, have had a less-than-stellar day.

So, in my already emotionally fragile state, I forget that I’m the parent of someone who has autism and depression. I forget that the angry young woman lashing out at me isn’t really condemning me. She’s fighting some unseen demon that I can only imagine.

“I just want peace,” I scream at her.

“I don’t want peace, I want justice!” she replies.

I’m too exhausted to pick up my sword and help her slay her beast, whatever it might be. I turn away. I go downstairs and drink a cocktail with my husband. I leave her to cry herself to sleep alone in her dark room.

For a few more hours I pretend that she’s just choosing to be obstinate and defiant. I make believe that there isn’t a chemical imbalance in her brain that has been adversely affected by the dark Minnesota winter. I ignore the injustice I feel knowing that Asperger’s makes it difficult for her express her sadness in a socially appropriate way.

Later, I crawl into bed and turn out the light. As my eyes adjust to the darkness, I know that in the morning I will shed the mantle of denial. I will somehow find the right words to help her see through her depressive haze. I will have the strength to pick up my sword and continue to fight.

P.S. Many good days have followed since I wrote this post, with the occasional bad day thrown in to remind me of my special place in this world.

Forbidden Fruits

by Emily Smith

I’d like to take a detour from our usual program and call attention to the insights of another young artist, Lily Myers. She wrote an amazing slam poem earlier this year, one that any female/feminine listener must hear and understand with such immediacy; in three and a half minutes, Ms. Myers describes virtually all the accumulated hurts of our gendered lives. Even the third-party title of this link lays bare that stricken nerve: “Watch A Student Totally Nail Something About Women That I’ve Been Trying to Articulate For 37 Years.”

I cannot do it justice alone. Here it is.

Lily Myers Slam Poem worth spending 3 1/2 minutes of your life watching.

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If you identify as masculine, as a boy or man, I won’t exclude you in addressing this piece. In fact, it seems even more important for women to share this with you, the men in our lives. We love you to bits, but it hurts us when you don’t notice our frailties. Sometimes we need to hear that it’s okay to try for bigness. That permission can make a world of difference.

We feel small in our skins because men fail to notice our suffering, but also because other women don’t corroborate our feelings. Shrinkage is a hard problem to articulate; by its nature, it makes itself unseen. Despite the commonness of the struggle, nobody shares it. I doubt most women could have unearthed the raw emotion that Lily Myers exposes here, let alone denounce it as she has so bravely done.

We all face demons when occupying physical space, and I am no exception. Emotional eating is my ceaseless plague; all told, I’ve yo-yo’ed through sixty full pounds between June of 2009 and today. I currently weigh 190 pounds, nowhere close to ideal for my 5’3″ frame. However taboo or artless that may sound, my honesty feels right.

More taboo and artless honesties still to come, in what I hope will evolve as a series on gender and the autism spectrum. Today it seemed more important to cover a neurotypical base, a sort of default or control group for later contrast. Despite that, Asperger’s remains relevant. Stay tuned.

I never forget that my non-Aspergian female friends and family members understand demons, too. I count the following, nameless yet identified, among them:

  • A gluten-free vegan who does daily battle with both Crohn’s Disease and anorexia nervosa, quite the courageous “true, young and pure girl-woman” as she once wrote
  • A strong, fit teen who still went from designer sample size to an 8 within the space of a year (since grown womanly dimensions have this tendency to occupy more space, now don’t they?)
  • A gender-fluid female who resents her tiny hourglass waist — she would feel far more at home with a svelte, boyish cut of the body
  • My über-feminine high school gal pal whose body mismatches her indelible sense of self as a woman, and who makes a classier lady than most who are born to it

These women have so much more to offer the world than only their insecurities. Yet over the years, I’ve found I can best understand other women by considering them as self/self-image paired units. I confess to feeling awful about this; the women I know and love are full and dynamic characters. They make brilliant discoveries, speak vivaciously in many languages, seize control of their creative projects and build their own lives. Surely such positive traits should serve to identify them.

But no.

The body parts a woman hates, the workouts she despises but does anyway, the foods she’s convinced she absolutely must not eat— these are the facets of her character that prove as form-fitting and impossible to dismiss as her shadow.

We tell ourselves that beauty only goes skin-deep, but that hasn’t been true for a long time. Not since the summons of a seraph with a flaming sword. Not since the paradise where nakedness knew no shame. Not since two lovers sharing an apple marked the end of the world.

The Top 5 Reasons I’m Thankful To Be the Mom of an Aspie

By Jill Wilbur Smith

People sometimes ask me if I wish there were a cure for Asperger’s. It’s a tough question, and, for me, not one that has a yes or no answer.* Do I wish that I could magically eliminate Emily’s challenges? Of course. But I have the same wish for her neurotypical sister.  In some ways, wishing I could cure Emily’s autism is like wishing I could “cure” her blue eyes.

Emily has many gifts that I believe she wouldn’t possess if she weren’t on the autism spectrum. If she didn’t have Asperger’s, she wouldn’t be the uniquely talented person she is. If I weren’t her mom, I wouldn’t be the woman I am, either.

This season of Thanksgiving reminds me to take time to reflect on the wonderful things I’ve experienced as Emily’s mom. Here are five things that make me thankful for my beautiful Aspie.

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1. I’m thankful for the unique lens through which I get to view the world. Living with Emily, I’m often reminded that the way I experience life isn’t the same as the way others do. I’m grateful for the moments of clarity that illuminate those differences. Emily challenges me to expand my way of thinking. Some of the most rewarding experiences as a her parent have been those times when, instead of me pushing her to conform to social norms, she’s forced me to let go of my conventional way of thinking.

2. I’m thankful that Emily possesses a staggering intellect.

When Emily was 5, she told my sister, “Did you know that an elephant’s trunk can hold 10 quarts of water.”

“How do you know that, Emily?” her aunt asked.

Emily sighed and said, “Oh, Aunt Terri, I have a lot of knowledge.”

She, indeed, has a lot of knowledge. She fascinates me with the things she remembers and the insightful way she connects disparate facts. I truly believe that it positions her to be able to change the world.

3. I’m thankful for every moment of frustration I’ve experienced as Emily’s mom. Every time I’ve been exasperated that she couldn’t tie her shoes/ride a bike/pick up her toys/trick-or-treat/drive a car/join in a conversation, has helped me grow as a mother—and as a human being. I’ve come to understand that my frustration during these times pales in comparison to how frustrating life can be for her.

My co-workers often marvel at how calmly I manage office drama and challenging situations. “You’re so patient,” they say. I want to answer that I’m not patient, I’m accepting. Patience implies to me that I’m willing to wait for the other person to “come around,” to see things my way. What I hope Emily has taught me instead is to be empathetic.

4. I’m thankful for Emily’s amazing creative talent. At 9, Emily decided to play the piano. Within two years, she’d outgrown her piano teacher. She plays the euphonium with an unexpected tone and quality and more emotion than you would think possible from a large brass instrument. She has perfect pitch and a pure singing voice that often brings me to tears. She’s a great cook. And, at 22, she writes with a voice and in a style that I’m not sure I’ve achieved at more than twice her age.
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5. I’m thankful for how often I’m surprised by my quirky, nerdy, talented, beautiful girl. Life is always interesting with Emily. We sometimes face challenges that others might never encounter. But we also have many moments of great wonder and joy. I wouldn’t trade my life with Emily for anything in the world.

(*I know we’re lucky. Emily’s place on the spectrum is far from the most challenging. I’m grateful for that and I know that our experience isn’t that of others.)

 

Social Energy: A Marathon, not a Sprint

by Jill Wilbur Smith

I’m in a book club with a group of women with whom I might not otherwise socialize. It makes for interesting conversation about the books we read, and I’m grateful that I’ve gotten to know them all so well over the past few years. I wouldn’t trade the experience for anything.

But, because these women aren’t my close friends, and because I only see most of them once every 6 to 8 weeks, it takes extra energy to attend the meetings. We meet on Friday night, not always my most vibrant time of the week.

The morning of the last time we met, I was having coffee with Emily and bemoaning the fact that I had book club that evening. It had been a long, trying week at work and I was psyching myself up for the night. I didn’t want to go. It felt like an obligation, not something fun.

“I like these women a lot,” I told Emily, “but I have to prepare myself to meet with them. It takes extra social energy to go to these meetings.”

Emily’s expression changed and she nodded her head. It hit me.

“I’ve just described every one of your social interactions, haven’t I?”

“Pretty much,” she said.

I’ve lived with Emily for 22 years, and this was the first time I really sensed what it must feel like for her to have Asperger’s.

I’ve been in other situations that require extra social energy: going to a party where there are people I’ve never met, teaching a workshop for the first time, interviewing someone about a difficult life experience. But these circumstances don’t occur every day.

For Emily, every day requires the type of stamina most of us only need occasionally. Even interacting with people she knows well can zap her social energy.

I’ve always known that Emily needs extra time alone to “decompress” as we call it. But now I have a little better understanding of why. Now I understand how exhausting it must be for her to go to work, meet with friends, take part in conversation around the dinner table.

When I’m faced with a difficult social interaction, I can usually take a deep breath, fix my resolve and sprint through the encounter. Emily, on the other hand, is running a social marathon. It requires constant training and conditioning.  And the resolve to just keep running, even when the finish line is nowhere in sight.

How Emily Beat the Unemployment Statistics

by Jill Wilbur Smith

Earlier this summer I came across a staggering statistic. According to many sources*, an estimated 83 percent of adults with Asperger’s are unemployed.

I stumbled across this information on the Internet a few days after Emily returned home from college. My initial reaction was panic. “Why didn’t I know this?!” I thought. “Why haven’t we been working on this for the past six years?”

I spent the next 24 hours in a funk, keeping this tidbit to myself while I processed what it could mean for our family. I found blog posts and websites that listed the best degrees for people with Asperger’s, most of which don’t recommend English or Political Science, Emily’s major and minor.

I walked around with a worry knot in the pit of my stomach imagining the worst.

Then I got real. My sensible husband helped pull me back from the brink of despair. “What about people with Asperger’s who have a college degree?” he asked. “And who’s the source for the unemployment data?” Good questions. I went back to the Internet.

That search uncovered…nothing. No statistics on how many people with Asperger’s graduate from college. In fact, I was unable to find the original source for the 83 percent statistic, although it appears on many blogs and websites.

So, I decided to ignore the online babel and do what I’ve always done with Emily. Follow my instincts and believe in my heart that she can achieve anything she puts her mind to. Remind myself that her disorder is classified as autism spectrum for a reason. No two people with Asperger’s are exactly the same.

What happened next surprised and overwhelmed me. Emily got a job. Within two months of graduating from college, she landed a full-time job.

I love the story of how she did it. Here’s how it happened.

At my suggestion, she decided to enroll with a temporary employment agency in the hopes of landing an office job while she searched for full-time work. (I offer this advice to anyone looking for a job. It’s served me well in my career.)

On a Monday, she met with an agency in downtown Minneapolis, submitted her resume and took the basic screening tests the agency requires.

On Tuesday, she called her references to see if she could continue to use them for her job search.

One of those calls was to a former Minnesota state representative on whose campaign she volunteered in 2008. He runs a family-owned insurance company near our home. And, he just happened to be looking for a customer service representative to replace someone who was leaving that week. He invited Emily to interview for the job.

On Wednesday, she interviewed.

She started the job on Friday.

Did Emily “beat the odds” of finding employment? Maybe. Or maybe the statistics on the Internet are outdated, untrue or have been misconstrued. Maybe projecting the future for my beautifully complex daughter has nothing to do with numbers, but only with our ongoing journey to explore the many iterations of life that lay before her.

 

*I found one reference to a 2001 study in the U.K., but not the study itself. If you know the original source for this unemployment data, I’d love to know about it!

Why a Good Label Can Help You Avoid Disappointment

by Jill Wilbur Smith

My younger daughter, Sarah, loves jellied cranberry sauce. Don’t judge. She developed her taste for it from me. (I don’t know if I’m drawn to it because of the taste, the texture, or the fact that it slurps from the can in a perfect cylinder with hieroglyphic rings etched around its center.)

When Sarah was 9 or 10, she came across jellied cranberry sauce on a salad bar. It was the first item she went for when she brought her plate back to the table. She shoveled a huge piece into her mouth—a bite she immediately spat into her napkin, wiping her tongue of the offending flavor.

She hadn’t discovered jellied cranberry sauce—but pickled beets.

Imagine her surprise and disappointment.  A nice label on the salad bar would have been useful.

That’s how I feel about labels. They serve a purpose. They let you know what you’re getting so you can avoid unpleasant surprises. Good for a salad bar, even better for a person with a developmental disability.

The day my daughter Emily was diagnosed with Asperger’s was one of the most liberating of my life. I had a name for her idiosyncratic behavior. The label helped me know what to expect from her so I wouldn’t be surprised by her conduct.

Let me be clear. Emily’s label isn’t an excuse for bad behavior or a free ticket to let others take care of her. It’s just another way of understanding who she is so that we can better help her navigate the world. And so that others know what they’re getting as well.

I often tell people that Emily is on the autism spectrum, that she has Asperger’s. I don’t say it to elicit pity, but as a way to clue them in about what they can expect of her.  It helps explain why she might not look them in the eye when they talk to her. It provides context for my elation when she gets her first job at 21. It reminds them not to be surprised if she reacts to a loud noise or a bright light in a more exaggerated way than most do.

Her label helps assimilate her into society in a way that’s appropriate for her.

Lots of people like pickled beets. They’re delicious. They can be used in a variety of recipes—but never as a substitute for jellied cranberry sauce.

Emily is delightfully delicious as well. She’s wicked smart and has a quirky sense of humor. Like pickled beets, she has a little bit of an edge about her that, paired with the right set of expectations, can be phenomenal. Just don’t expect a sugary sweet disposition that melts in your mouth and you won’t be disappointed.