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Sunday, December 3, 2017

‘I Thought I was Lazy’: The Invisible Day-to-Day Struggle for Autistic Women

From The Establishment

By Reese Piper
November 30, 2017

Adapting to daily life is not often factored into the diagnostic process for autism. It should be.

Picture of the author in her room, taken by her roommate.

Rushing off the subway platform, I race through the crowded streets to try to make lunch with my friend. I’ve canceled on her twice this week, something she isn’t exactly thrilled about. As I cross an intersection, my foot catches the curb and I tumble to the ground, my phone smashing into the busy street. Grabbing it quickly, my daily reminders flash through the cracked screen — wash dishes, clean room, buy tampons, email manager.

I groan, remembering that I was supposed to do all of these things before lunch. How could I forget, again?

The tasks would take my friend less than an hour to finish, but errands require an entire morning for me to complete. I start to panic, contemplating how I will squeeze them into my schedule now. Overwhelmed by the thought of having to sit down and socialize while feeling on edge, I call my friend to cancel. She digs into me for being inconsiderate. I head home, filled with shame, but instead of beginning my tasks, I push the clothes on my bed aside, turn off my phone, and crawl under the covers.

I don’t resurface until the next day.


My inability to properly plan ahead and complete daily tasks has dwarfed my personal growth and well-being since I moved away from home seven years ago. I live in a constant state of disorder, expressed through missed appointments, forgotten text messages, and errands and assignments that take twice as long than my peers to complete. Even tidying the garbage littered across my apartment feels too overwhelming.

My poor organizational and cleaning skills have fractured my relationships, prevented me from thriving in jobs, and in the process, destroyed my self-worth.

I tried various planners and organizational apps. Nothing worked. Frustrated, I reached out for help multiple times, relaying to various therapists my struggles with organization and cleanliness and other ailments — such as insomnia, a tendency to get lost in obsessive thoughts, and an inability to switch between tasks. Not one specialist connected the dots. They viewed disorganization and forgetfulness as easily amendable, and never searched for the source of my struggles.

I live in a constant state of disorder.

My last therapist suggested a new productivity app that had promising results. When I told her it didn’t help, she dismissed my organizational concerns altogether, with a dismissive, “Don’t worry, you’ll get more organized when you’re older.” I laughed bitterly. I had been in therapy for three years and my chaotic schedule had not improved with time. Her words were crushingly easy to translate: Don’t be lazy, work harder.

But the thing is, I was grown up — and her words stung deeper than she realized because I’ve heard similar statements from my friends and family before, many of whom view my disarray as a sign of laziness, unintelligence, and selfishness. And after each attempt to bring structure to my life failed, it became hard not to see myself that way too.

Defeated, I lamented my woes to a friend one afternoon. When I mentioned that I obsessively ruminate — something I rarely admit to anyone — a light flashed. “Has anyone ever suggested Autism?” she asked.

Autism Spectrum Disorder (ASD) is a developmental condition that’s thought to be primarily expressed through differences in socializing, communicating, and repetitive behavior. Lesser known are its effects on executive functioning (EF) — which can be defined as a transit map in our brains that tell us how to plan and organize, keep track of time, and remember information in the moment.

Slow EF can bubble into missed appointments, lack of planning ahead, or getting so fervently drawn into the matter at hand that remembering to do basic tasks like washing the dishes fall by the wayside.

Yet, even though a strong connection between EF and autism has been documented since the’90s, it’s absent on CDC’s list of symptoms, and is not widely known to the public. Teachers and therapists don’t equate difficulty accomplishing daily living tasks with ASD. Continually showing up late doesn’t raise a flag like, say, lack of eye-contact readily does.

New research, however, is shedding more light on how EF affects autistic people, especially those socialized as girls. It’s presumed that autistic girls adapt better in life since many display stronger social skills. But a five-year study published this year in Autism Research unveiled a different layer — autistic girls are struggling in their ability to function in daily life, perhaps even more than their male counterparts.

“Our results indicate relative weaknesses for females compared to males diagnosed with ASD on executive function and daily living skills,” the report noted.

In other words, autistic girls might seem better at communicating, but that’s not bleeding into their ability to function at home.

My therapist was stunned when I broached autism. She hesitantly said, “But you don’t seem atypical.” Like so many people, she believes autism manifests through missed social cues or lack of eye contact, neither of which I possess. ASD is the boy from Atypical and Parenthood, obsessed with routine and order. The person who seems “different” in conversation. My disarray doesn’t fit this mold, and so was never seen as a neurodiverse trait.

The study looked at children and adolescents, which left me wondering — what about adult women? Are there women who pass socially but have difficulties navigating the pressures of daily life? I posted the question online, and a flood of responses came in within minutes.

Sue is a social butterfly and works four different jobs providing support and mentorship for people with developmental disabilities and mental illnesses. The 34-year-old is successful, but struggles to remember appointments, manage money, and clean her room. She was a strong student in school, but her executive-function difficulties followed her through life. “I get overwhelmed and don’t know where to start.”

She first learned of autism at 22, but didn’t give it a second thought. Gregarious and emphatic, she didn’t see herself as autistic. But as she learned more about the different ways it can affect women, she realized that ASD fit her perfectly. She was diagnosed a decade later. She now lives at home and is grateful for the support her family lends, providing gentle reminders to complete tasks every now and then. “I am in no rush to leave home,” she says.

Sue’s hesitation to see herself as autistic is not unique for people with executive differences. Corina Becker, vice president of the Autism Women’s Network, says, “The stereotype with autism, women including, is that they are really neat and tidy, and while some of that is true, for many people executive abilities don’t work.”

Melissa, a 32-year-old working mother, struggled to keep on top of daily tasks when she lived alone in her twenties. Trash and dirty clothes piled up in her apartment. More than once, her family came over and threw out all her belongings.

She leans on her husband, who does the cooking and cleaning and checks that her clothes are on correctly before work. She has a master’s degree and a successful career, yet despite her accomplishments, she struggles with poor self-worth as a consequence of her differences in organization. “Most people see me as lazy and gross. I’ve never liked myself much,” she says.

‘The stereotype with autism, women including, is that they are really neat and tidy.’

Different executive abilities particularly hurt those socialized as women or who identify as such. “Women are expected to just pick up daily skills naturally. You’re tainted as a moral failure if you can’t get organized,” says Becker.

Bre from Oklahoma echoes this: “I compare myself a lot to other women. I am frequently disorganized and forget stuff — it’s been a lifelong struggle.”

Melissa was misdiagnosed twice growing up, and it wasn’t until four years ago that a psychiatrist finally recognized ASD in her. Since discovering she’s autistic, she’s started to accept herself — but it has understandably been a long road. It’s easy for un-diagnosed people to compare themselves to allistic (non-autistic) people, and it’s easy for allistic people to judge differences harshly if they don’t recognize a disability.

Lauren Kenworthy, Ph.D., one of the study’s authors and director of the Center Of Autism Spectrum Disorders, notes, “If you’re seen as a lazy and stubborn, people punish you for not getting your act together.”

Kenworthy explains that support after a diagnosis can help an autistic person learn how to accommodate their differences. Recognizing areas of strain — that maybe those wont’s are indeed cant’s — they can try different methods, such as finding a routine that works. They may also learn to accept, for instance, that maybe both cleaning and cooking are not possible in one day, as each depletes so much energy.

For too many, though, that crucial diagnosis may never come. People who struggle with executive abilities tend to get ignored. The spectrum is labeled through the ability to communicate and socialize; adapting to daily life is not often factored into the diagnostic process. Difficulty with EF is treated as a byproduct of autism, not a defining feature.

All of which explains why, even though the signs were clearly there, I walked through life unnoticed for so long.

Julia Bascom, the executive director of the Autistic Self Advocacy Network and a co-author of the study in Autism Research, explains:

“There’s a long history of research ignoring people’s experiences and voices and focusing on the parts of autism that are most visible to neurotypical researchers. While autistic people tend to describe things like executive functioning, sensory processing, and movement as core parts of our disability, the scientific community unfortunately hasn’t gotten up to speed with us yet.”

I saw myself in every woman I talked to. With each interview, I felt less alone, although I mourned for our shared invisible struggle.

At 25, I finally received my overdue diagnosis. It hasn’t waved a magic wand over my messy room but, at least now, I understand why I struggle with organization, cleanliness, and short-term memory.

Still, while my diagnosis has helped me understand and accept myself, it hasn’t improved my relationships. When my differences surface — when I accidentally wear my shirt backwards, or bleed through my tampon, or tell my friends to meet at the wrong bar, or fall flat on my face in the middle of Union Square — my friends display an eye-roll, a sigh of exasperation, an embarrassed look away, a patronizing laugh, or pure anger.

My best friend that I cancelled lunch with that afternoon laughed when I told her about autism. “You’re not neat and organized. Look at your room, there’s no way you’re autistic. You’re just looking for excuses to not clean!” I recoiled in silence, knowing no amount of explanation would break her stereotypes of autism.

I am happy that, today, I have a better sense of who I am. But every time I look at my messy room, I am reminded of this disheartening fact: So long as my friends, family, and therapists recognize me as allistic, my executive differences will always be interpreted as a personal failure.

Author’s Note: To promote acceptance, I refer to myself as an autistic person instead of a person with autism because it is a central part of my identity. The people I featured identify as autistic as well. Additionally, some autistic people do not see their executive differences as a disability — and that is valid. My goal with this article is not to confirm or oppose that, but show how difficult it is to live in a world that doesn’t recognize EF differences.

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