Autism

Autism.

Anyone growing up in this decade knows about autism.  Debates abound about how to diagnose it, whether it’s over diagnosed, what causes it, and why there’s such a spectrum range from low functioning to high.

For our family, we live it.  Daily.  With two children on the spectrum, my husband and I have tackled the many questions which prevail about autism; and for me personally, I have struggled with the impact of being sandwiched between a mother whom I now know to be on the spectrum and my children, specifically my daughter, who are as well.

As I wrestled with the issues over the years, I wrote, and I wrote.  And I watched how my writing reflected all as I learned more about my mother, my daughter, and myself.  This piece below is my attempt to capture that growth.

Autism Sandwich

Daughters sometimes fear that they might become their mothers some day.  I don’t.  Instead, I wonder whether my daughter will be like her grandmother.

My mother grew up in a time and a country where autism was not a diagnosis.  Her sensory issues labeled her as different in a world which prized conformity.  Beatings were regular punishment for erratic behavior her parents did not understand.  The genius she possessed went unheeded, because she could not adapt to convention.  To this day, she knows she is not like other people, and she still does not comprehend why.

A different generation, another country, and two children on the spectrum provide me a better glimpse into her reality, but it is still merely a glancing look at who my mother is.  Double walls form a barrier between us.  On my side is a partition of invisible scars, remnants of wounds unwittingly inflicted, emotionally and mentally.  On her side is a barricade of self-absorption, insurmountable because her brain does not realize the wall even exists.

And yet….

I stand before that wall, wanting, hoping that I will find a crack, a fissure, something – for the sake of my daughter who is waiting, too.  She is at the foot of a cliff, conflicted, wondering whether she will climb to a reality where she is accepted for who she is or whether she will drop into an abyss of misperception forever.

She struggles, because I struggle.

I teach my daughter how to effectively manage her frustrations with a world constantly out of sync with her plans – even as I realize that my primary example for dealing with stress was a mother unable to cope with disparity between expectations and actuality of life.  I help my daughter learn empathy – even as I recognize my own lack of compassion, a result of the hurt I carry about my mother’s inability to ever see beyond her own self.  I coach my daughter about the social niceties of life, hoping for some societal awareness on her part – even as I am conscious of the numerous ways my mother’s awkwardness betrays itself in my own mannerisms.

Who a mother is affects who a daughter becomes.

My daughter vacillates, because I vacillate.  Silence ruled my youth, so chatter prevails in my home – even as I realize my daughter’s monologues must be curtailed if she is to function properly in society.  Cold reserve dominated my childhood home, so expansive affection governs my family – even as I recognize that my daughter’s boundaries must be shortened for acceptable communal standards.  Inapt perfection controlled my adolescence, so mistakes and forgiveness regulate our household – even as I become more conscious of the ways my daughter’s standards are an integral part of who she is.

Who a daughter becomes affects who her mother is.

I am learning because my daughter is learning.  Together we navigate the intricate channels of how to communicate, both appropriately and well.  Together we trek through the valleys of erroneous expectations into the light of realistic standards.  Together we map our way in and out of the mysterious realm of empathy, that vast empire we both long to know better.  Together we travel the rough terrain of frustration, discovering the rewards in the crannies when we actually stop to look.

And finally, I see the crack in the wall – through my mother’s interactions with my children.

Sporatic I love you’s instead of silence.  Awkward hugs instead of clumsy pats.  Occasional smiles instead of blank expressions.  Intermittent praise instead of criticism.  Effort.

Who a daughter becomes affects who the mother becomes.

My mother is learning, because I am learning.  Learning to embrace all that is wonderful about my daughter, and therefore, also about my mother.  Discovering how to let go of childhood expectations I still hold for my mother, and therefore, also for my daughter.  Realizing that in the end my mother and daughter are no different from me or anyone else – because we all simply want to be loved and accepted as we are.

And so now I hope.

I hope that someday my daughter might be like my mother – rising above the misperceptions and misunderstandings of her world to forge a life for herself; choosing to struggle through the difficulties of family life instead of fleeing; continuing to grow, despite her inflexibility and confining perspectives.

And I anticipate.

I anticipate that someday my daughter will be more than the sum of my mother and me – able to wholeheartedly embrace herself for whom she is through the lessons learned from our autism sandwich.

website autism

Everyone was talking.

A few years ago, a young man diagnosed with Asperger’s Syndrome committed murder.  Since my husband and I, along with a school and family counselor, had only recently begun working with our oldest daughter to help her learn how to process and express her feelings, I worried about all the talk and how she might be affected.

A potential paid opportunity arose for me to write a personalized essay on any topic of my choice.  Since my thoughts were consumed by the news story and my daughter, I decided to age my daughter and imagine what she might be thinking if she were a teenager at the time of the incident.

The piece below was the result.  It was accepted and published, and I was paid for my “therapy” writing.

Everyone Has Been Talking

Everyone has been talking about the teenage boy with Asperger’s who murdered another student at Lincoln-Sudbury high school in Massachusetts.

Except me.

I haven’t said anything. You see . . .

I have Asperger’s.

I was diagnosed when I was eight. My parents seemed to think this was a good thing. Asperger’s Syndrome explained all the behaviors they’d been trying to understand since I was two. Suddenly I was their child with Asperger’s who needed to learn what Asperger’s was and how to change my Asperger’s-related behaviors.

It never occurred to my parents that I might not want to change . . . .

Asperger’s is considered an autistic disorder. You know, like Dustin Hoffman in Rainman, only I’m nowhere near severe. Basically, I’m normal with a few quirks. I don’t have what you would call empathy. Smells and loud sounds bother me. I don’t like to wear certain types of clothes. If my food touches one another on my plate, I simply can’t eat it. I take everything literally. I have no clue how to read people’s faces. I do things with my hands which my friends say gets worse when I’m upset. I say things which my friends think are rude, but I just think I’m speaking the truth.

Not that I have a lot of friends. You need good social skills to make friends. I have “incessant speaking” skills as one of my teachers said on a recent report card. Details are important to me, but people think I give too many. They always cut me off and ask me to get to the point. How can I get to the point if I don’t start from the beginning?

As a kid, the elementary school guidance counselor would ask me if I need to bring “Miss Flexibility” out. Pretty dumb, I know, but it was how she reminded me that I was being inflexible about something. I don’t think there’s anything wrong with liking routine, though. I don’t really like change. And this boy with Asperger’s actually murdering someone means change.

Everyone has been talking about the fact that the boy from Lincoln-Sudbury high school has Asperger’s. Before, most people had never heard of Asperger’s. This week the newscasters have been telling people what Asperger’s is and what the symptoms are. There have been stories in the newspapers and on the internet about Asperger’s. Suddenly, everyone knows about Asperger’s.
Will people suddenly start noticing me? Will they think that I’m a freak? That I might flip out like that boy? Or will they want to try to “help” me? One of the newspapers interviewed someone who said people like me simply need to be understood and helped. But I don’t need any help. I don’t want to be understood. I’m happy with how I am. I don’t want to change anything.

For the most part I ignore my Asperger’s. Outside of my family, teachers and close friends, no one even knows I have Asperger’s. You have to spend a lot of time with me before you’ll notice my little “idiosyncrasies” as my friends like to call them. I’m “high-functioning” as my teachers put it. My parents have never told me my I.Q., but I know from overhearing them when I was younger, that it’s pretty high. I make up for my Asperger’s deficiencies with my brain, I think.

But I don’t know if my brain will help me now. I just want things to stay the same.

I haven’t told my friends about how I’m feeling. I’m not really good at that sort of thing. Often I can’t even figure out for myself what I’m really feeling. My parents are always trying to get me to think more about my feelings, asking me whether I’m hurt or embarrassed by something. Usually I just know that I’m upset. That’s all I really need to know, isn’t it? Why does there always have to be a reason why I’m upset?

I do know why I’m upset now, though. It’s because I’ve worked so hard to just fit in, to not be the odd person out. I don’t want to suddenly be noticed and singled out, just because I have the same thing that boy does.

The weird thing, though, is that none of my friends have mentioned anything about my Asperger’s, when they’ve talked about the murder. They said that it was a heinous thing to do, but that’s about all they’ve said. My parents, on the other hand, felt compelled to have another one of those “feelings” conversations with me. They wanted to know what I thought and how I felt about everything. I didn’t know then why I was upset, but I did tell them I was upset. Their response was that I shouldn’t worry about things, that the talk would die down soon enough, and Asperger’s Syndrome would go back to being something no one knows about.

At the time I thought they didn’t know what they were talking about, but now I’m wondering. I haven’t heard anyone mention the murder today. And to tell you the truth, Ihaven’t seen anyone looking at me funny at all this week. In fact, things have pretty much been the same as they always have been since I started high school. My friends haven’t been acting differently towards me, and no one’s pointing a finger at me, shouting that I have Asperger’s, too. Maybe I’ve been worrying about nothing.

Maybe no one cares if I have Asperger’s.

Maybe I’m the only one who really notices that I’m different. I say that I ignore my Asperger’s, but the truth is. . . well, I pretend to ignore my Asperger’s. The fact is that I am different, and I know I’m different. I just don’t want anyone else to think I’m different.

That might not make sense. But then… maybe it makes perfect sense. I may have a social skills disorder, but even I know that everyone wants to fit in. The question is whether people can fit in and be different at the same time.

After this week, I’m starting to think that the answer just might be, “Yes.”

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