How My Son's Autism Diagnosis Led to My Own

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How My Son’s Autism Diagnosis Led to My Own

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Current autism research in little girls is greatly limited. Separating the sexes in diagnostics and research is a burgeoning new field, meaning that current estimates of autism affecting 4:1 boys to girls, respectively, may be grossly out of date. After my son’s diagnosis, I began fiercely researching anything I could find about it, and have learned that I, myself, am autistic.

This past summer, my son was diagnosed with autism. I knew he was different from the moment he was born, but every time I saw him do something “quirky,” I would tell myself (and everyone else), “Oh, that’s normal, he’s just like me. I did that.”

He was the perfect baby.

He slept well, played alone, almost never cried, began using non-verbal communication of his needs before he could walk, was so careful, we could trust him with holding glass at the age of 12 months, and he began spontaneously reciting letters, numbers, and musical notes (Tchaikovsky, not nursery rhymes) around 11 months old. Although ahead in some aspects of his development, he was always slightly behind or just at the “average developmental” cut-off—especially in expressive speech and socialization.

When he was approaching his 4th birthday, and had yet to produce a single, spontaneous, coherent sentence, I knew that my self-assurances were for naught. We met with the local school district’s special education director for testing. The initial meeting was just supposed to be for filling out paperwork and petitioning for the test. After 10 minutes of visiting with this educator, she insisted he receive an emergency placement into the preparation preschool program meant to ready special needs children for kindergarten.

Still in a state of mindful denial and numbed shock, I felt my hand signing consent forms and heard next to nothing this woman was saying to me. Gratefully accepting the mountain of paperwork and local resources from her, I put my children to bed for a nap, and combed through them the entire afternoon.

It was glaringly obvious he had Sensory Processing Disorder. Screaming and throwing things soon after his brother was born caught me completely off-guard.

What happened to my little, perfect adult-baby?

He suddenly seemed angry and agitated constantly, whereas, before the new baby, he was contemplative, independent, and loved helping me with everything from baking to gardening to going to new places (provided his safety-net stroller was with us).

New behaviors began emerging like crawling on furniture, obsession with spinning wheels, taking (really good) photos and videos of his toys with my phone, obsessively pouring anything that would fill a container into another container, walking on his toes, avoidance of anything that made his hands sticky or slimy, and absolutely detesting any loud noises (unless he was making them).

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Continuing in my research, I kept finding “autistic things” that didn’t apply to him, yet some that were glaringly obvious.

Maybe he just has SPD and a speech delay.

His test day came filled with specialists and psychologists and therapists. Six adult, female professionals buzzed around him attempting to make him participate in a number of play-based diagnostics.

He loved the attention of all the adults, and wanted nothing to do with his brother.

He’s just like me.

While he was their test subject, I answered exhaustive questions about his daily routines and habits, his social interactions and his interactions with me. The more she asked, the more a gut feeling was forming in my chest.

At the end of the almost two hour test, they concluded that he’s “a conundrum.”

“We need to observe him in class, with children his age, and with his teacher.”

They did so for several weeks, and in those weeks, I stewed in denial. I knew little to nothing about autism, except that it was some hushed word that some parents would risk not vaccinating their children against deadly diseases to avoid (this connection has been de-bunked). Autism was this big, scary, painful word that had to be whispered.

The day I got the call, I tried not to be devastated. I’m ashamed to admit I spent the rest of the day crying and thinking my son wouldn’t (and didn’t) love me. I’m ashamed to admit that I felt responsible for “breaking him.” My perfect, little mini-me doll whom I adore so much.

I remember thinking that the difficult behaviors and increasing reclusiveness he’d displayed in recent months would mean he’d never have a happy life.

These feelings of stigma toward a label that my child didn’t ask for were unfair.

The next morning, I began tearing through every accredited website, educational video, and library book I could find about autism. I needed to know what caused it. I needed to know how to best support him.

The only “correlated” cause is genetic.

“But no one in my family is autistic!” I thought.

My research continued, and as it did, certain traits began sticking out: inappropriate social responses, difficulties in understanding when to stop or start talking, and among others, extreme difficulties in processing external, sensational stimuli.

Relating to him and seeing different family members who also carry many of these traits tells me that autism is most certainly genetic. Reflecting on these traits, I came to realize just how ingrained into his personality his autism is. There is no defining point where it begins and his “normal” personality begins. They’re so intertwined, that I would never wish he DIDN’T have it.

I love finding cars and trucks lined up all over the house.

Haha! I did that with Barbies!

I love his intense focus and amazing memory.

I had memorized every book in the library at his age too. How funny!

I love his fascination with how things work and intense interest in letters, numbers, and puzzles.

Wow, this kid is definitely mine.

The more I began picking out his “autistic” traits, both his gifts and his challenges, a clearing in the trees was forming. Now, the question was how to help him function in the rigid demands of public school and eventual workplace?

My education was swift when I began looking for autism parenting groups on social media. So many were unfailingly disappointing. People talking about how much they “hated autism” and how much it “ruined their child.” I left all but one of the groups within a few minutes of joining them.

Embracing Autism is a Facebook group started by fellow mom blogger at Autistic Mama who was disheartened by the negative attitude toward ASD. A small group at the moment, it is filled with autistic adults and parents of autistic children alike.

I began learning that a lot of the “different” and “weird” things I did as a child (and as an adult) were similar to many of their stories.

Expressing my concern and curiosity to my friends and family, they still laugh. “You’re too normal  to be autistic.”

Yes, I do read people fairly well. Their emotions, their body language, their facial expressions (I learned in my psychology diagnostics and criminology classes in college that I can read micro-emotions: a rare talent in the field), but what is appropriate to say?

Appropriate responses?

Whether I should continue talking to someone or not?

Crippling anxiety about having to “go out?” Constantly second-guessing everything I say in a conversation?

Replaying old conversations in my head compulsively to make sure I got some sort of “special script” right?

Crippling anxiety about new experiences or changes in my life?

I can usually feel when someone is annoyed with me.

I can almost always deduce what someone is thinking—though I don’t really know how.

At almost 30 years old, I still say things, then wish I hadn’t when a person gets uncomfortable. Making a mental log in this person’s “file” in my brain that, “okay, I guess I shouldn’t say this” or “oh wow, that was really callous, I should just never talk again.”

My own emotions?

When my husband and I first began dating, I lost my temper about something small and inconsequential. “Why don’t you figure out why you’re really mad and talk to me later,” he suggested.

It took me 4 days.

From that point forward, when he would see a certain “wheels turning face,” he’d ask me if I wanted to talk yet.

“No, I’m still trying to figure out how I’m feeling.”

This communication has helped me deduce my own feelings about things, but my processing time is extremely slow.

Classmates’ disruptive behavior at school would send me into a spiral of severe anxiety, fight-or-flight running, stomach aches, and nausea all throughout my school years. Plugging my ears helped, but I was the “tattle-tale, teacher’s pet, book worm, little adult, little professor” and a range of other names given to me by peers and teachers alike.

Autism was never mentioned.

My mother took me to the school counselor—you can imagine the déjà vu at taking my own child for similar “meltdowns” and reactions to social stimuli and loud noises some 15 years later.

I received a school pass for when things got too loud, but sadly, most of the time I was sent back to class—without help.

“She just worries too much.”

In college, I was diagnosed with general anxiety disorder and took “stress relief through movement,” which has certainly helped me cope, along with crafting, gardening, aromatherapy, baking, and other things that keep my hands moving (umm, homesteading blog, anyone?).

Floating through life, constantly feeling alone or like an alien, I always had one or two friends I considered “friends,” everyone else, I’d call “acquaintances,” much to my mother’s dismay.

Only connecting, showing my true self to a handful of people, I slip into different masks constantly. Reading someone and the situation demands I act a certain way, and although everyone does this to a certain extent, once I let people into my “inner circle” (or get drunk with them), I’m constantly told, “you’re really different than I thought you were.”

My resting “thinking”  face has always been a cause for concern or disdain by my peers.

“Oh, I thought you hated me” was something I heard often.

Always confused, I had to start explaining that was my “thinking face.” In my late teens, having heard this so many times, I began training myself to wear a fake, slightly pleasant smile all the time.

The staring into space or difficulty with eye contact still makes people uncomfortable.

No one ever says anything about those, but I can feel when their bodies go rigid. Forcing myself to look them in the eye for longer than I’m comfortable, I just let them talk, because losing my train of thought is embarrassing.

Associated with being “gifted and talented,” it was acceptable that I had a few quirks, so none of these behaviors were addressed as a child.

I grew up in a constant state of bottled up anxiety and rage, confusion in my social roles as a female, and “how smart” or “how artistic” or “how tough” I was allowed to be before I was teased.

Feeling like I was half girl and half boy, I wanted to dress as both. One day a frilly, pink, over-the-top dress; the next, long shorts with an over-sized camouflage t-shirt.

I spent all of my time absorbed in books about outer space, the Victorian Era—actually any historical fiction I could find—fairy tales, and science fiction. These stories and characters being better and closer friends than anyone I knew in real life, I’d spend hours reading or running through the woods pretending to be anything, but human.

A single-track mind to a fault, I would imagine something—and make it happen. I did everything I could to go to space camp, including competing for and winning scholarships.

My previous, obsessive knowledge of various international space programs and everything that had ever been discovered about the vast reaches of space (plus my very “bossy” personality) won me “The Right Stuff” award at the end of camp. One of only two girls in a camp of almost 100 kids, winning that award felt like some serious vindication and pride in my “different-ness.

I never thought much of any of these things. I thought all people thought like me—until I began researching autism.

Feeling a growing sensation that perhaps, I need to be tested, I looked for a diagnostician.

To my surprise, there aren’t really any viable diagnostic tests or specialists in diagnosing adults with autism.

A lot of autistic people who fall through the cracks as children, learn to cope with social situations and feeling overwhelmed on their own.

I am almost 30 and JUST NOW feel like I know what is happening in my body when I have “meltdowns.”

Hearing balloons pop or random screaming physically hurts—like every nerve in my body is on fire. When I’m excited or angry? I can’t sit still. I STIM constantly (something my mom always called “fidgeting”). Having intervention at an early age may have helped me avoid things as a teenager, like an abusive relationship, severe insomnia, depression, gender confusion, thoughts of suicide, and constantly feeling like I’m not good enough for anything or anyone.

Coming across Tania Marshall’s “ I Am Aspiengirl” website and books, I cried. A lot.

Every. Single. Symptom. She listed as possible signs of Asperger’s in young girls, I did. Even innocuous things like collecting stationary and feeling resistance to write on it—I did or still do.

Reading her first book I Am Aspiengirl made me oscillate between tearing up and bursting with laughter, not because it is particularly funny nor emotional, unless you have lived with doing these same things and being told you’re odd your entire life.

Compulsively organizing toys, keeping “sets” of toys together, having an array of imaginary friends, being called “prissy” for my odd hand gestures and girly physicalities all marked me out as different from other girls in play groups and Montessori school. My mother has pictures of me setting up an enormous array of Barbie Doll sets, organizing them, and then just looking at them for hours—when I was two years old and still in diapers.

Other signs of autism in females, which I have experienced are behaviors like:

  • Studying other people’s facial reactions, body language, and patterns of speech — then altering my own “social personality” to match the group I’m in (called “chameleon-ing” or “masking”).
  • Atypical language development — more formal or pedantic speech than my peers. People always told me I used “$1.50 words” when a “nickel word” would do.
  • Early, mostly self-taught, reading skills.
  • A “controlling” or “bossy” nature when playing with my peers, and a preference for playing and speaking with others much older or younger than myself.
  • Extreme intuition of future happenings.
  • Superior memory skills and intense focus on self-guided subjects (to the point of literally not hearing others speaking to me when I am lost in thought).
  • Difficulty understanding “age appropriate” or “socially appropriate” speech and behaviors.
  • Being “bossy” in play groups and directing other children’s play.
  • An uncanny connection with and understanding of nature and animals.

The list continues. If you are feeling a pang of relation to these experiences—either in yourself or your daughter—I highly, highly recommend looking into Tania Marshall’s Best-Selling Books I Am Aspiengirl and I Am AspienWoman. They are relatively inexpensive, and two books I am so glad to have added to my library. When I’m feeling grossly out-of-place or have a “social hangover,” it’s beyond comforting to turn to these books and remind myself that, despite my feelings, I am not alone.

Feeling like I needed something “official,” I turned to my Embracing Autism group. The woman who administrates it (a blogger friend over at AutisticMama.com) pointed me to her blog post about having the same feelings of realization, but seeing the financial costs and difficulty in seeking official diagnosis, she’s accepted self-diagnosis.

I, too, am at this stage in mine and my child’s journey.

Looking back at my feelings toward autism and my gross misunderstanding of it, just a short time ago, I feel a great need to talk about it, to advocate for it, to educate and support.

I’m a business owner, mother, wife, writer, crafter, gardener, baker, seamstress, sculptor, reader, and autistic. It’s nice to meet you.