autism

A common undiagnosed or misdiagnosed condition for many women

Almost two weeks ago, someone challenged a fundamental assumption I’d held about myself. This revelation has upended my world. Suddenly I feel wobbly, tentative, and not quite sure who I am.

I’m undergoing a massive shift in self-understanding.

As a licensed psychologist with over twenty years of clinical experience, I’ve considered myself an expert on matters of the psyche and personality.

My scope of knowledge includes myself. I’m an avid believer in the power of therapy and have seen my fair share of specialists over the years. If a few weeks ago, you’d asked me if I think I know myself, I would have answered affirmatively and then described me as a “sensitive extroverted introvert.”

But two weeks ago, I saw a therapist I hadn’t seen in a while. She challenged my self-definition with something so stunning that I’ve done nothing for over a week except to try and take it in, to make sense of this piece of information.

I think I’m ready to share it now.

I’m autistic.

There. I said it.

Those two words have both transformed my reality and, at the same time, has scared the living shit out of me.

What does it exactly mean to be autistic?

I thought I knew. When I hear that diagnosis, I imagine a young boy lost in his own world. He’s sitting in the middle of the kitchen floor, spinning plates. He grunts and screams if anyone interferes with his repetitive play or tries to move him to another activity.

That’s what comes to my mind when I hear the word autism. I’d never imagined that someone like me — a formerly married psychologist with three grown sons — would be on the autistic spectrum.

Women and Autism

My confusion makes sense. Until a few years ago, women and autism were rarely mentioned in the same sentence. Older research speculated that the female-to-male ratio was anywhere between 1:4 and 1:10 for autism.

Now researchers and physicians believe that alongside the world’s one million autistic boys and men, there are also nearly one million autistic girls and women, most of whom have gone undiagnosed. In other words, the ratio of men to women is much closer to 1:1 than previously thought.

There is a myriad of reasons why autism in women and girls goes undetected. Typical symptoms manifest differently based on divergent gender neurology. When women experience hyper focusing, sensory stimulation sensitivity, and social awkwardness, these symptoms are often attributed to an emotional or mental problem rather than to neuroatypical differences. Misdiagnoses like ADD, Borderline Personality Disorder, and anxiety-related conditions are common among autistic women and girls.

Autism in women is harder to spot.

Women’s strength in social skills also makes autism harder to spot. Since fitting in is paramount, we are better at blending in, a technique often called masking.

We learn to imitate those around us as a way to camouflage our social struggles. According to Charlotte Egeskov at the Tiimo Blog, we know to use “social imitation strategies,” including:

https://medium.com/r/?url=https%3A%2F%2Fthe-art-of-autism.com%2Ffemales-and-aspergers-a-checklist%2F“Making eye contact during conversation, using learned phrases or pre-prepared jokes in conversation, mimicking other’s social behaviour, imitating facial expressions or gestures, and learning and following social scripts”

We use these to hide our struggles. Social imitation strategies work exceptionally well during our younger years but become more difficult as we age, and the complexity of female socialization increases.

Such strategies, however, are stressful and fatiguing. In “The Cost of Camouflaging Autism,” Francine Russo points out:

“Camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.”

Looking back, I see the hefty price I’d paid hiding my neuroatypicalness. After a long day of counseling patients, I’d come home so physically exhausted that I had to take the next day off to recover.

How I Found Out

I had no idea I was autistic. None.

This diagnosis has come as a complete shock. One of my sons was diagnosed in his early twenties, and I suspect my father, an odd man, was on the spectrum. I never considered that this genetic condition might not have skipped me.

Two weeks ago, I saw an old therapist — someone I’d seen before. As we caught up, she stopped me and asked if I’d ever wondered if I might be neuroatypical. Stunned by her proposal, I emphatically said, “No, I’ve looked at the autism screening assessments (most based on stereotypical male symptoms). They clearly don’t fit me.”

She cocked her head, blinked, and then asked, “You sure about that?”

I stared back at her, speechless. I knew she was telling me something important, but she wasn’t going to push me. For two days, I did nothing. No research, nothing.

Slowly, I found the courage to turn to the Internet and research online the characteristics of adult women with autism. Two articles, in particular, caught my eye.

Females and Aspergers: A checklist

Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome

My Checklist of Uniqueness

As I moved down each checklist, I was shocked.

  • Numbers have a personality for me. I like even numbers better, especially even years, although 2020 has let me down. I had high hopes for this gorgeous, even, round number.
  • Social chitchat confuses and bores me.
  • Too much noise or too much silence gives me a horrible headache, and I hate eating food that pops in my mouth, like peas or kernels of corn.
  • I struggle to fit in with groups, especially groups of women, need a lot of solitude, and social events wear me out. I get a severe hangover, to the point where even my skin hurts for hours, from pushing myself too hard.
  • Looking at some people directly physically hurts. I can hardly bear to do it.
  • I much prefer texting to phone calls. And video chatting someone new takes a lot of courage and determination for me to tolerate.
  • I love to listen to the same song repetitively and eat the same thing for days or even weeks.

I could go on, but I think you get the picture — I’m neuroatypical.

I haven’t quite known what to think. On the one hand, I’m afraid some people will see it as a convenient excuse to disregard their abusiveness. Now there’s a reason for our relationship problems. One more time, they’ll make it out to be my fault.

On the other hand, learning about this new dimension of myself feels in some ways like I’ve just taken off a corset that has been cinched so tight I’ve been barely able to breathe. For the first time in a long time, I feel a little more permission to be me — uniquely and wonderfully different.

How this diagnosis is changing my view of me

Maybe I’m not rude when I’m the first person to leave a party. Maybe showing up was a more significant gift of myself than most people realize, and I’m showing self-respect by leaving.

Maybe taking time out of each day for solitude is a critical part of good self-care. Perhaps I don’t have to make myself do all those things that scare or intimidate me.

This diagnosis has got me reconsidering my life. It’s put how I do things in a different perspective. I’ve worked so hard to be normal. To fit in and be like everyone else. Little did I know I have been overextending myself, like a car operating in low gear all the time.

Processing this new diagnosis of autism has challenged all my assumptions about myself.

But it has also done something else. It’s demolished my previous understanding of autism. One more time, I see how narrow-minded and prejudiced I’ve been about a select group of people. This time, it was about neuroatypical people, instead of LGBTQ people or those of a different religion, ethnicity, or race.

I’m starting to realize that a whole gamut of individuals is on this spectrum. They are a creative, dynamic, engaging, and functional group of people. Autism is a much more complex condition than I’ve ever imagined. Discovering I’m a member of this group has been a game-changer.

 

Dr. Kerry McAvoy is a clinical psychologist, mother of three grown sons, writer, and author of the devotionals: Jesus, The Ultimate Therapist: Bringing Hope and Healing, Jesus, The Ultimate Therapist: Healing Without Limits, and Pain as a Starting Point.

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5 thoughts on “My Shocking Discovery at 58 Years Old That I Have Autism”

  1. Please, please, get a diagnosis. You might just be broader autism phenotype. The last thing we need is more high achieving mothers watering down the diagnosis. If your parents didn’t notice something was wrong with you as a child, it’s highly unlikely that you have autism.

    Reply
    • Thanks, Fred.

      Please be aware this conclusion was initiated by a clinician and not a self-assessment. Secondly, I contacted my mother for her input. Remember I was raised in the 1960-70s when little was known about autism. Yes, she agrees—it made sense to her and explained so many things, such as my hyper-sensitivities, my irritable, finicky temperament, the social awkwardness with little to no friends for most of my life, the dearth of imaginative play, the sensory overloads I frequently experienced, the physiological issues of clumsiness/loose-jointedness, and so on.

      I look high functioning now because I have worked very hard to fit in. I had to make it work. Honestly, what were my choices? Over the years I got better and better at masking.

      I have met other late diagnosis autistic women and they look and act like me. Their early childhood histories are similar to mine. We had to do what we did to survive. There was little to minimal accommodations for us.

      Your comment is troubling. If you look at the research and literature, you will see that autism has missed a whole range of representation, particularly girls and women. Our presentation manifests very differently. The field of study will do BETTER not worse having a more fleshed-out picture of autism for having us included a part of the cohort.

      Reply
  2. It’s not just women who are under-diagnosed, although the percentage is higher because of the implicit (and sometimes exlicit) sexism in the psych world. Like you, I did not consider myself autistic until my late 50s. Only after taking the Simon Baron Cohen test and several others and getting consistent results did I begin to accept my Asperger’s. (This term has now been replaced by the supposedly more accurate ASD 1. I suspect that Hans Asperger’s embarrassing association with Nazi eugenics was probably more the reason,. But, whatever you call it, my list of telltale signs is the same as yours plus the overwhelming need to identify patterns.)

    My symptoms were far more pronounced as a child but I have since learned a host of adaptive techniques. (Hint: pretend someone’s eyes are two little creatures you’re checking out – you can look at a goldfish as long as you like!) This is the true unspoken meaning of “high functioning”: the ability to pass as neurotypical. Temple Grandin once told me that as she got older her friends said she didn’t act so “Aspie” anymore.

    I am delighted that brilliant young Greta Thunberg is helping to make the diagnosis more socially acceptable, and I love her description of it as a “super power”. Because for every aspect of disability we have, there is at least one other compensating atypical ability. We get to embrace and celebrate our differences.

    Reply
    • Yeah, my struggles are relatively small these days. I do great living alone, although I’m good at accommodating anyone I’ve ever lived with. I, too, had a much more difficult time as a child. It was rough navigating the schoolyard.

      I think it is very helpful for us late-diagnosed autistic individuals to step forward. We are helping to break down some of the dangerous stereotypes. Thank you so much for your comment!

      Reply
  3. Hello. I’m stunned after reading this blog entry and the comments. Your stories mirror mine to a surprising degree. It’s comforting to know I’m not alone.

    I received an ASD diagnosis at age 57. It’s been exactly 15 months since then, and I still struggle to stay on top of bare necessities. I am now face-to-face with the realization that I’ve been masking most of my life. I masked so intently during my childhood that I don’t remember anything! The real me “wasn’t there.” Maybe my mind disassociated to another realm. Not sure.

    My family have all distanced themselves from me as they don’t know me, or seem to like me or trust me, the me I was supposed to be. Social time drains my energy to the maximum. I need days to fully recover emotionally. Tags on clothing drive me nuts. Low lighting is all I can tolerate as overhead lights cause headaches and brain fog. Highly sensitive to foods and need immense amounts of fats each day to keep my brain in top form. I live alone and spend time alone 90% of the time. I can tolerate a person for about one hour and then, I’m “gone.” My mind checks out. It’s crazy. I have to leave the scene or blurt. I blurt things out that offend people but I never, ever mean to harm anyone. That’s not my nature. But blurts have a power all their own and can fire at any moment. I have to be in “high gear” when out in the world. That means, I put a tight rein on the “aspy” me and adopt the “professional mask” me. Imagine pulling on the reins of a horse for 8 hours straight. Exhausting!

    Perhaps taking the mask off is worth this difficult stage. There are lonely times and confusing days. (Why can’t people come right out and say what the want / think / feel / need instead of innuendo??!! I do not do well with innuendo!!) But I’m hanging in there. I have good days sometimes. And, a load is being lifted by removing these masks. I slip into the mask often, but Increasingly, I’m more aware of when I mask.

    I just applied for SSDI. It takes 7-8 months. I may ask for financial help from my community. Instead of worrying about money, I will focus on healing and staying present. I’m typically a “giver” but I’m not afraid to ask for help.

    If I make it through this alive, I’m going to go for the gusto! Let go of the past, get some professional care, meet someone wonderful, and live the rest of my life so fully!! I’ll make up for lost time.

    Reply

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