Saturday, December 30, 2017

What Happened When I Met a Young Man with Autism in Target

The first thing that I noticed was the feather.

He held it firmly in his fingers, and I watched as he traced the tip along the wall edges. Up, across, over, a pattern and a rhythm understood only by him.

But I knew.

It was a Friday afternoon in Target, and the din of people talking, machines warming food humming behind the counter, and the less-than-friendly overhead lights were all difficult to drown out. I kept my eyes downcast, focused on the breadsticks that I was eating, dipping them into the tiny cup of marinara sauce like a brush in paint, watching the crisp brown turn red.

I have not needed a feather of my own in many years. I knew why he did.

The woman with him—a sister, perhaps, or caretaker, I couldn’t be sure—spoke to him in that peculiar way. Autism-speak. The pitch of her voice just a shade unnaturally high, as if talking to a child instead of a 15-year-old boy.

“Can you come over here, Oliver?”

I felt her teetering perilously on the tightrope-thin hope that he would listen, be good, be still. But it’s hard to keep still when you know you make people uneasy just by existing in an autistic body.

Her praise for him came shortly after: “Good job listening!”

After a moment’s pause, Oliver kept moving, pacing around the cramped food court in slow, steady steps. The woman stood at the counter with a shopping cart, placing their order while keeping her gaze fixed on him. A myriad of emotions swirled through me as I tried not to stand up and shout solidarity at the top of my lungs. Instead, I kept quiet, carefully eyeing them both.

And then he stopped. Right behind my chair.

He hovered in what other people might consider uncomfortably close proximity. The feather was still clutched in his grasp, that source of comfort kept so close by. Flashes of the hair scrunchie I had always worn on my wrist came to mind, along with the memory of nearly clawing at my skin to escape the world around me, muted only by the soothing sensation of the fabric.

I get it. I’m a lot like you, Oliver.

The woman with him didn’t know that, though. She was looking in our direction, mild panic washing over her face as Oliver continued to stand behind me. Her shoulders tensed like I know my mother’s must have when I was a child and we were out in public. I could sense what would come next, could feel the word before she ever uttered it. She looked right at me, teeth pressed together tightly in an impossibly white row:

“Sorry…” she said, the apologetic twinge in her voice cutting like a knife in my stomach.

A stream-of-consciousness set of responses rushed through my mind:

Don’t be sorry! Don’t EVER be sorry! You never, ever need to apologize for him. HE doesn’t need to apologize for being who he is! NONE OF US DO.

I shook my head, pushing away the tears threatening to appear at the corner of my eyes, and waved a hand dismissively. I answered her, my voice quavering slightly:

“No, no!”

Behind me, Oliver continued what he was doing, and I fought the urge to hug him.

The woman alternately glanced between the counter and Oliver, still uncertain. As I ate the last few bites of my breadsticks, I realized I had to say something.

I walked over to her, half under the pretense of throwing out the breadstick box in the garbage behind her, and took a deep breath.

"Excuse me...Is he autistic?"

Cautious optimism colored her cheeks, along with a hint of surprise. She turned to face me, her demeanor almost relaxed compared to how tense it had been moments earlier.

"Yes. Yes, he is," she replied, confirming what I had known all along.

Without hesitation, I responded:

"Me, too."

We quickly fell to talking, and I learned that she worked at an autism school nearby, where Oliver was a student. I told her of my work as an international speaker and autism advocate, and how I knew all-too-well what Oliver was going through, having been on that path myself many years ago.

It was a moment that none of us could have expected, our paths crossing in Target on a Friday afternoon. The relief on her face was drawn in shapes; round cheekbones that rose instead of sank, and lines on her forehead that had stopped creasing even just briefly. Happiness and wistful sadness filled me in combined measure, wishing that my family could have felt that relief when I was Oliver's age. How it would have meant the world to encounter a stranger in public who didn't stare, didn't whisper, point, or disdainfully glance in our direction. How it would have given us all such comfort to know that we weren't alone in walking this strange, unpredictable, incredible journey of autism.

For me, those years are long past, but for Oliver and so many others like him, and for their loved ones and caregivers, these moments are present and alive. As we move into the start of a new year, I am thinking of all the Olivers out there, the autistic individuals and families looking for promise and hope in the days ahead. As an international speaker, advocate, and someone who has been where you are: I see you. I understand, and I am here to help.

You are not alone.

Tuesday, October 11, 2016

Why It's Still Okay to Hate People with Disabilities

I want you to read this.

I want you to read these words and see what living in this world is like not for individuals with disabilities, but for everyone else. I want you to see how your world shapes you over time, in subtle and overt ways, to see us.

The comments above were found on a post of a customer service stories website, in response to a story about a grocery store bagger with Down's syndrome. What shocked me wasn't that someone would so openly admit to hating and fearing individuals with disabilities, but that there was another comment below it echoing similar sentiments (not pictured). Had these commenters said that they hate black people, or gay people, and believe they should be wiped out, there would have been tremendous outrage. But threats to the lives of disabled people are met with barely a shrug.

It is comments like these that enable people to feel this way: One person voices their thoughts, and it empowers the many who are silent to speak up in agreement. Initial hesitation disappears in the face of validation, and soon these voices grow louder, bolder, united in their common fear of anyone who is not like them. Their voices become a roar, eyes large and furious, teeth gnashing, forcing their way into the minds and hearts of those who live with disabilities.

As a young autistic girl, the only thing that made life more difficult than thinking my peers hated me was how I hated myself. No one had to tell me that all disabled people should be wiped out; I came to believe it myself, with thoughts of suicide beginning when I was in the fourth grade. For years, I eschewed the label of "autism" and clung desperately to Asperger's Syndrome, believing it somehow made me better than those who were more affected, more "obvious." I didn't want to be perceived the way I knew they were: As being stupid, retarded, deficient.


I know now that my feelings were borne not out of hatred, but from incredible self-loathing. I have confronted the prejudices that I never intended to have and overcome them. Obvious or not, "high functioning" or not, we are all the same in the eyes of those who feel as these commenters do. They make assertions about who we are, what we love, how we live, the very core of our souls based on the category they place us into: "Acceptably" (not visibly) and "unacceptably" (visibly) disabled.

I want you to read these words.

I want you to decide if they sound like something you've ever thought, or said when you thought no one who would care was around. I want you to think about disabled children and adults who have suffered and continue to suffer because these attitudes are held by people in positions of power. I want you to understand that our pain is not the price for your comfort.

You can ignore your prejudices and the damage they cause, or you can face them and try to make a change for the better, both for yourself, and for individuals with disabilities all over the world.

Which do you choose?

Wednesday, May 25, 2016

SPARK Plug: Thought on Participating in Autism Research

I was recently asked to take part in the SPARK (Simons Foundation Powering Autism Research for Knowledge) online research partnership, and was both excited and apprehensive to hear about the study’s purpose and intended goals.

One of the things I began to wonder was what this study could this mean for our understanding of autism—where it comes from, why the incidence rate has seemingly “increased” in the last few years, and how or if it travels through families. The autism narrative is often challenging to navigate, and it is my hope that a study like SPARK could be a map to help us find our way.

When we talk about autism, there often seems to be a great divide. On one side, there are personal anecdotes, stories from individuals and families of their own personal journeys on the spectrum. On the other side, there are scientists and researchers working endlessly to collect data and compile information about autism as it relates to a greater epidemiological picture.

Both sides have been and continue to be invested in finding the cause of autism, of whether environmental factors or heredity or something else hold the key to deciphering autism. The SPARK study has the potential to answer that question, to take the tiniest of saliva samples from our mouths to someone’s ears who can then say, “This is what causes autism.”

Along with illuminating causes, there is the possibility of this research being used to develop treatments for autism. While it is important to find ways of reducing or preventing self-injurious and other physically harmful behaviors sometimes associated with autism, we must also remember that autism is part of who a person is, and treatments should be administered with the person, not just the disorder, in mind.

Autism research has continued to expand over the last few years, and as we study the spectrum in a laboratory setting, it is imperative that autistic individuals be included in that research process—not only as subjects, but as co-investigators. Our triumphs and heartbreaks, our potential futures, our very lives are being put under the microscope, and it is we who have the greatest stake in this research.

One day, we will learn the results of the SPARK study, though it will take time for the full impact of those results to unfold. I am hopeful that the picture these results paint will show that autism is not a puzzle to be solved, but a story to be told. I want to see the answers and knowledge that we glean open a discussion on how we can improve the quality of life not just for future generations, but for individuals on the spectrum living in the world right now.

Most of all, I want those of us who have felt out of place in the world, in our communities, and in our families to learn through SPARK that what lives in our DNA is not something that was done to us, but part of what makes us who we are. 

Tuesday, April 5, 2016

Vexed by Vaxxed: Autism, Vaccines, and the Epidemic of Ignorance

It's only a few days into 2016's Autism Awareness/Autism Acceptance Month, and despite how much progress has been made over the past year, I have already come face-to-face with evidence of how much work still needs to be done.

As most folks probably know by now, the controversial documentary Vaxxed! was slated to be screened at the Tribeca Film Festival later this month, at the behest of the festival's founder, Robert De Niro, who is a parent of a teenage son on the autism spectrum. Shortly after defending his decision to screen the film, De Niro announced that Vaxxed! would not be shown at the festival after all, saying that he had reviewed it with experts in the medical community and that "[...]we do not believe it contributes to or furthers the discussion I had hoped for."

The film, which was directed by discredited researcher and anti-vaccine progenitor Andrew Wakefield, has provoked an incredible backlash--first from the scientific and autism community when it was going to be shown at Tribeca, and then backlash from the anti-vaccine movement when it wasn't. Yet the comments and attitudes of those who are anti-vaccine have proven for me to be some of the most disturbing and misinformed that I have witnessed.

This culminated in my seeing a Facebook post from Vaxxed! producer Del Bigtree (how is that even a real name?) and a response to a comment on that post, which I have screencapped below:

(Source: Del Bigtree Facebook post)
When you create a narrative of autism that centers almost entirely around young children, this is the result.

When you promote an agenda that says autism is caused by vaccines, that ignores the presence of autism throughout history, insisting it is something new that didn't exist twenty, thirty, forty years ago so therefore only affects children, this is the result.

Adults with autism are right where we've always been: Here, among you, living our lives to the best of our ability, trying to survive in a world that neither understands nor accepts us.

We are here now as much as we were in times past; the only difference is that twenty, thirty, forty years ago, you didn't see us. You couldn't, because we lived in institutions, placed there by our families who were told to lock us away, forget about us, and move on with their lives. Autism was "childhood schizophrenia," mental retardation, "manic depression,"...every diagnosis but what autism actually is, because for so many years, it was neither understood nor widely recognized.

So we suffered in silence. Alone. But we were there.

Today, knowledge of autism is greater than ever before. It has entered and become affixed to the popular global consciousness, and specialists and providers trained in the assessment and treatment of autism spectrum disorders are in overwhelming demand.

But autistic children do not exist in a vacuum. They will grow up, age out, have different needs and challenges as they get older, for which society remains woefully unprepared. Yet the single greatest resource for helping these children is still the most untapped one:

Autistic adults. We who offer both caution and hope, because we know firsthand what it means to navigate the perils and pitfalls of being autistic in a neurotypical world.

It often seems that becoming an adult with autism is never presented as an option to children of anti-vaccine parents, and it is these children for whom I feel the greatest sympathy. Children who hear themselves described as "vaccine-injured" or "vaccine-damaged."  Children who hear these sentiments over and over again, and who start to see themselves as exactly that:

Broken. Less. A toy in need of a factory reset.

But individuals with autism are not objects; we are human beings with personalities, passions, strengths, and challenges that are both tied to and so much more than our neurology.

It is this viewpoint that I would like to see represented at events like the Tribeca Film Festival and other Autism Awareness/Acceptance month celebrations. We must recognize and prioritize common sense and rational thought, rather than fear-mongering and hysteria-based rhetoric.

I want anti-vax parents to stop searching for the 'normal' child they think is missing and start looking at the autistic child that is right in front of them.

It begins with education. It begins with denying a platform to those whose words and ideas would promote ignorance and ultimately cause harm individuals with autism and their loved ones. It begins with raising the voices of those who are working to affect positive change, those with stories to tell and wisdom to dispense.

Change your own perceptions of autism, of what it means to be autistic, of what the possibilities for autistic children are, and of what we can do to ensure a better quality of life for all individuals with autism.

It begins with you. It begins today.

Tuesday, March 8, 2016

When Nice Girls Get Mad: Thoughts on Women, Autism, and Anger

{This post was originally published on the blog of Autism Speaks, as part of their "In Our Own Words" series. The original post can be viewed here.}

Not too long ago, I found myself caught in an exchange with someone. I say “caught” because in that moment I felt much like a fish—swimming happily at first; then baited, lured away, and ensnared in the trap that was deliberately laid down for me.


Having interacted with this person previously, I knew what was in store if it happened again. Yet despite the thicker skin I’ve grown over the years, I still found myself caught off guard by what ended up happening. But there was a marked difference this time in the emotional response that this interaction provoked in me. I did not feel sad or hurt. I did not cry.

I got angry.

It was a new kind of anger: Righteous. Justified. Certain. The sort of anger that I knew I had every right to feel, and that I was sure others would understand as well.

I was wrong.

The moment that I chose to vent my anger, something changed. Suddenly, I was chided for the negative tone in my words. I was told, “Amy, you’re so nice and sweet. Why would you be so mean?

It was as if my brief, hyperbole-filled, frustration-fueled tirade had completely negated the person I was up until then. It seemed that, because I had not been able to hold in my emotions—even for just one moment—I could no longer be categorized as “nice and sweet.”

Girls and women on the autism spectrum are often viewed as being meek. Quiet. Shy. If a male on the spectrum gets angry, it is expected. Understood. Men are given outlets in society for this anger, and are not socially reprimanded for expressing it.

But if a female on the spectrum gets angry, it is unanticipated. Frightening. Meetings are held, concerns are voiced, medications are dispensed. In our society, women are expected to inhabit the role of peacekeeper, trouble-soother, feather un-ruffler. Anger is considered “unladylike.” Anger makes women “ugly,” and we are permitted to be ugly no more than we are to be angry.

Men on the autism spectrum are not often asked why they are angry. Their anger is acknowledged, recognized, and it is allowed to simply be. There is no reason, then, why this should not be possible for women on the spectrum.

The anger of women on the spectrum is no less real than the anger felt by men. As with all emotions, it is natural, it is healthy, and it is human. It is worth noting that the personhood of men on the spectrum is not called into question simply because they show anger, and so the same should then also hold true for women.

It is difficult enough to find our anger unwelcome by society at large, and to face the same double-standards in the autism world makes things that much more challenging. Women on the spectrum must have access to outlets of our own—safe, individualized options that give us the ability to express our anger without fear of judgment or reprisal.

To deny or be denied any part of the emotional experience is nothing less than to deny women on the spectrum of a part of our humanity.

And that’s definitely something to get angry about.

Sunday, February 28, 2016

The One Thing We Shouldn't Tell Children with Autism

Last year, I was asked to be a guest speaker at a middle school in Brooklyn for their Peace & Diversity Conference day. I spoke there to a group of sixth graders, and then had lunch with a self-contained class of sixth graders with autism. I was asked to return again this year, and made the trek out to Brooklyn at the end of January, just hours ahead of a snowy winter storm.

I can still see him so clearly. The small one, with thick, black-rimmed glasses that were almost too big for his face, sitting there tugging nervously at the hem of his shirt. He wasn't as gregarious as some of the other children--not like the one I affectionately refer to as Mr. Mayor, because he probably will be one someday--but he made an impression that I won't soon forget.

It's not often that I have the opportunity to be around sixth graders, let alone ones who are as self-aware and bright as they were. One by one, they came over to sit at my table and began asking me questions in that combination of wide-eyed innocent and weathered that only 12-year-olds seem to do so well. They sometimes spoke over each other, and as their enthusiasm grew, the questions flew out almost before their brains had a chance to finish coming up with them.

Then it was the small boy’s turn. He cleared his throat and looked up at me shyly.

“What was it like when you had autism?”

 I pause.

“Well…I still have autism,” I said, the full weight and meaning of his question just starting to sink in.

It’s no secret that most of the media portrayals of autism predominantly feature young children. Autistic adults—who are not necessarily cute, small, or more easily managed—are given very little of the spotlight in comparison. But perhaps there is more to it than that.

Every day, many children with autism undergo various types of therapies—ABA, Floortime, social skills groups, and so on. Self-contained classrooms are cropping up in schools all across the country, accompanied by a veritable army of teachers, psychologists, speech therapists, aides, and other professionals.  All of this in the name of helping these kids to overcome challenges, to thrive, and to succeed.

But increasingly, “success” seems to be defined as “no longer having or appearing to have autism.”

Parents, teachers, people with the very best of intentions are doing a great disservice to children with autism by sending a loud and specific message: That this is only temporary, something you are getting help for now, so that you—and everyone else—won’t have to deal with it later.

In reality, nothing could be further from the truth.

As a child, I did not undergo early invention. My parents tried one thing after another to help me, a desperate if not futile effort in a world that had little (if any) awareness or understanding of autism. The challenges I faced were many, yet few were greater than the low expectations and doubt in my abilities that others had for me.

Today, I am an autism consultant, a professional public speaker, a writer, and an advocate. I’ve surpassed the beliefs of those who said I would not amount to anything, who told my parents I would not graduate high school, let alone attend college. I have a Masters degree, I have my own business, and I have a life that took me years of struggle to build. My story only started because I believed it was worth writing, and even now, it is still being written.

I have overcome tremendous obstacles because I have worked hard to do so, not because I no longer have autism.

The fear of children with autism facing certain challenges for the rest of their lives is overwhelming, and often is the driving force for parents and teachers to find help for these children. But because autism is an integral part of who we are, overcoming those challenges does not and will not suddenly make us neurotypical. It just means that we are going to grow up and have those challenges replaced by new ones.

Therapies and treatments have their place, and can be meaningful and effective tools for assisting autistic children and their families. But preparing your child to be an adult with autism is the best and most important thing that you can do to help them live in this world.

I hope I will get to see that little boy with the thick-rimmed glasses again. 

I hope he grows into his striped shirt, grows into the person that he’s going to become, a person who will give so much to this world. I hope he knows how special he is, and that he can be autistic and succeed, be loved, be a friend, and be just exactly who he is.

All of our children can.

Monday, September 28, 2015

Autism in the Movies: Thoughts on "Jack of the Red Hearts"

On September 24th, I had the opportunity to attend the opening night gala of the Golden Door Film Festival in Jersey City, New Jersey, which included a screening of the film Jack of the Red Hearts.

I hadn't known much about the movie beforehand, but several of the filmmakers were present at the event, including director Janet Grillo, writer Jennifer Deaton, and actors Famke Janssen (Kay), AnnaSophia Robb (Jack), and Taylor Richardson (Glory). 

[From left: Famke Janssen, AnnaSophia Robb, and Taylor Richardson in Jack of the Red Hearts.]
The movie centers around teenage runaway Jack (Robb), who cons her way into the home and life of a girl on the autism spectrum (Richardson) and her family in an effort to rescue and obtain custody of her own sister from foster care. When a young woman answers the family's advertisement (placed, strangely enough, via the use of a flyer with tearaway pieces of paper at the bottom) for a companion for Glory, Jack deceives the clearly-qualified woman into thinking the job's been filled, takes her résumé, and passes herself off as this person instead.

From this moment on, I knew exactly where the film was going and what was going to happen. I knew perhaps because this particular movie trope has been used before, especially in movies featuring disabled people. I knew because this was a movie made by someone who knows autism--albeit from the outside--and needed a way to make autism accessible to those who don't. And I knew that I have sympathized and identified with neurotypical (NT) characters in movies for years--largely due to few other options--but that somewhere, a decision was made that a typical audience couldn't be expected to sympathize with a little autistic girl, thus necessitating the addition of an NT protagonist.

It's no secret that I am a fairly sensitive person, and without a doubt, Jack of the Red Hearts struck a deep nerve. I'm not sure if "triggered" is the right word, but the film brought a great many memories rushing back and elicited an emotional response from me--but not necessarily in the good way. 

In actuality, as I sat there watching this film, I found myself fighting the urge to get up and leave the theater on several occasions. One occurred early on, when the mother of the autistic girl (Janssen) was holding and drinking from a coffee mug with the words "CURE AUTISM NOW" emblazoned on it in large letters. 

Another was witnessing the abusive--and there really is no other word for it but "abusive"--behavior of Jack toward Glory. Tying Glory to a fence with a leash as though she were an animal, when not neglecting her altogether. Forcing herself into Glory's personal space and brusquely demanding, "What's wrong with you?" Despite the film's insistence that I do so, I felt no sympathy for Jack, and instead recoiled at the thought of anyone like her ever being remotely near a person on the spectrum. 

We're presented with the tragedy of Jack's life, and made to place her desperation on par with Glory's family's desperation, and that somehow they both needed each other, even if they didn't know it. But I am an adult on the autism spectrum, and before that, I was a child with autism--a little girl, not too unlike Glory. What I wanted more than anything was to have a friend, and had a Jack-like figure been part of my life and then left as abruptly as she came into it, it would have hurt me tremendously. Jack's life might have been screwed up and rife with anguish, but that did and does not give her the right to wreak havoc on someone else's--least of all, Glory, a vulnerable child who would become attached to her and view her as a friend.

There was a Q&A with the filmmakers after the movie ended, and I had hoped for some insight into the decisions made in the process of creating this movie. What I learned instead was that, of all the people standing on that stage, only one or two truly seemed to "get" autism. I managed to push aside my emotions in favor of steeled strength and raised my hand to ask a question, but unfortunately I was not called on. I did not expect the members of the cast to have an in-depth knowledge of autism, but to hear some of the crew speak as they did made me realize just how much work there is still to be done.

When making any movie about autism, or featuring a character that has autism--a character that, in this case, was not actually played by an autistic actress--it is vitally important to receive and listen to feedback from individuals on the spectrum. Had the creators of Jack of the Red Hearts done this, I can almost guarantee that the film's climactic scene would've been completely different, as what was set up to be a poignant moment was, for me, a degrading and uncomfortable exercise in cinematic absurdity. 

I wish I could say that this film moved me. I wish I could say that I am so thrilled that there is a movie about a girl with autism as a central figure, and that I wholeheartedly recommend it to any and all those whose lives are touched by autism. But I cannot separate the dramatized elements of this movie from reality, because I have lived the reality, and the film's flaws are too troubling to overlook. I have no doubt that the intentions of the film's director and writer were entirely good, but the overall execution could have been so much better.

To say I was disappointed by Jack of the Red Hearts is putting it mildly. Individuals on the autism spectrum deserve more than being portrayed as burdens on the people around us. Movies entertain, but they also inform, and autistic people 
are certainly compelling enough to be the voices of our own narrative, to be the ones informing the world about what autism is and what our lives are like. Hopefully one day filmmakers will realize this, and give us a chance to speak for ourselves on screen.

And when the time comes, I know people will sit up and listen.  

Monday, August 31, 2015

My Father, the Hero

When I was a little girl, my dad would take me to a Hostess bakery outlet in Medford. It seemed very far from our house--over and past long stretches of blue sky dotted with trees and telephone poles and signs whizzing by in a blur. Stepping inside, it was as if I'd arrived at another world, one full of bread smells and baked goods with ingredients I delighted in reading because I was the only 8-year-old who could pronounce them.

We walked together through the aisles of that magical place, and I beamed up at my father, who I thought was also magical, because he always knew how to get there.

He was my hero that way, you see.

I go back to Long Island at least a few times a month, to visit. The drive there and the return trip to New Jersey were familiar before I ever had a license, so accustomed was I to going to the Garden State as a child to see my grandparents, aunts, uncles, and various cousins. But one of the main things I've learned since I started driving is that the journey isn't always the same; on the road, anything can happen.

So it was that I found myself forced to take a detour on one of my most recent drives back to New Jersey. The exit I normally take off of Route 80 is comprised of two ramps--one that goes to the right, and one that goes to the left, which is where I go. On this particular day, however, the left ramp was closed, and I had no choice but to head down the road not (ever) taken. Familiarity quickly vanished as I reached a somewhat hazardous intersection in the heart of downtown Paterson. I knew there was only one option.

I called my father.

Dad grew up in Paterson, and though the landscape and cultural makeup of the city have undergone a significant shift since his years living there, some things are still the same. 

The streets.

More importantly, the map that my father has of them in his head.

It's said that some folks on the autism spectrum have the gift of a photographic memory. That they can recall the layout of a street, or even an entire city, after being there on only a few occasions. My father, the Aspie, has not lived in New Jersey for over forty years, not since moving out to Long Island after getting a teaching job--yet the street names and placements remain clear as day in his mind.

It was due to this that he was able to perfectly guide me through Paterson to where I needed to be to complete the drive home. He spoke carefully, repeating directions when necessary, never rushing or admonishing me through each turn. It was as though he was there in the car with me, steering gently, again taking me from one world to another. Not once did I get lost, and in the moments I felt most unsure, my father stayed calm.

It can't be easy watching your daughter take charge of her own life, but when you're a parent, that's exactly what you're preparing your child to do. You let go, and let them. Even when it scares you. But maybe that's my dad's gift: Not controlling the journey, or the destination, but doing the best he can to help me arrive there safe and sound.

He is my hero that way. 

He always will be. 

Wednesday, April 1, 2015

Why I Don't Like April Fool's Day

It’s that (un)magical time of year again, where an entire day is dedicated to making fools out of people. Or, if you were me in seventh grade, that was every day. 
I’ve always had a difficult time telling when people are joking. Granted, I have gotten much better at it over the years, but what I’ve come to realize is that there is a distinct difference between a joke and a prank. People can share a joke, can laugh together, be part of it together. But a prank is decidedly far more one-sided: It’s Person A perpetrating a ruse against a completely-unknowing Person B. 
I have no doubt that there exist pranks that are harmless, or “softball” pranks, as I call them. From my experience, however, most pranks are mean-spirited, if not outright malicious. And that is why, even all these years later, I still flinch when I (inadvertently) click on a hoax headline and the website it takes me to says “April Fool’s!”. I know that I’m not the specific target of the prank—I know, in my mind, that it wasn’t an attempt by the website creator to purposely fool me, Amy Gravino, a person said creator has never even met.
But when you have been the target of a prank, when you have been humiliated, singled out, and aimed at because people know you are gullible, it’s hard to forget what that feels like, in your heart. When I clicked that website, I could still hear the laughter at my expense, laughter from my classmates who moments earlier I had thought actually liked me, but who were now laughing as I stood there alone, cheeks burning with embarrassment.
So I flinch. I pause, for the most fleeting of moments, and have to remind myself that it’s okay. Even though that laughter is faint now, it never fully goes away. 
But I sure wish April Fool’s Day would.

Thursday, February 5, 2015

Russian To Conclusions: The Problem with Diagnosing Vladimir Putin with Asperger's Syndrome

This morning, I received a message on Facebook from a friend: "Did you see this?" along with a link to a news story from USA Today. It stated that a study conducted by a Pentagon think tank in 2008 concluded that Russian president Vladimir Putin has Asperger's Syndrome.

Now, after reading the article, as well as numerous posts and comments online in response to it, all I can think is:

The president of Russia has Asperger's Syndrome? You're Putin me on.

There are a number of problems with diagnosing (however roundabout-ly) any world leader with Asperger's Syndrome, never mind one who has as abysmal a human rights track record and history of sociopath-level cruelty and indifference to his own people as Vladimir Putin. 

Right out of the gate, the report on the study says the researchers can't prove that Putin has Asperger's because they were unable to perform a brain scan on him. So it makes you wonder what the aim of running such a story could be, if not to provide something definitive.

What this really is and was is a shot fired. Wars happen not only with guns and bullets, but with words and propaganda. So the shot that was fired in this instance is reminiscent of a Cold War tactic: Discrediting the enemy by saying that he has Asperger's Syndrome.

And therein lies the problem: Whether the researchers intended such or not, Asperger's Syndrome is being used an insult, a reason why Vladimir Putin makes the terrible decisions that he does, and why he should be viewed as an ineffective leader. The equation then turns to this:

Vladimir Putin is evil. 
Vladimir Putin has Asperger's Syndrome.
Asperger's Syndrome is evil

It may seem like a far leap to those of us who live in and understand the world of autism and Asperger's Syndrome, but it is not difficult to lead those who are unfamiliar with Asperger's down that path. It is a path already begun with Adam Lanza and the Newtown killings in 2012, and carved out further with every subsequent mass shooting where the perpetrator is immediately described as having Asperger's Syndrome--regardless of whether it is true.

With every unfounded assertion, every assumption and negative media portrayal comes a mountain of discrimination and fear from under which we must repeatedly climb. And when you start to feel as though no one cares if you get out, the weight of that mountain eventually becomes unbearable.

Individuals with Asperger's Syndrome are artists. Writers. Mathematicians. Engineers. We view life through a different lens, and if properly supported and nurtured, can use that vantage to better ourselves, our communities, and the world at large. But if we are continually associated with people like Vladimir Putin--associated with psychopaths, with those who are to be feared, with evil--those opportunities will never come. 

Let us hope that media outlets will consider taking a more responsible tack in reporting stories such as these from now on, because it is not just the United States' relations with Russia or public opinion that is at stake.

The lives and futures of individuals with Asperger's Syndrome are at stake. And we deserve better.