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.

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.

Hopeless.

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?

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.

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.

Caught.

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.

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.

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.  

Auti-Sim: A Lens into Autism for "Neurotypicals"?

An article published in the UK newspaper The Independent was recently brought to my attention. The article in question describes a computer "game" that is actually a simulation of what it is like to live with autism. 

More specifically, the program focuses on the sensory issues faced by people on the spectrum (light, sounds, and so on), and--going by the description in the article--exaggerates these features of the setting in the game (a playground) to give the user an idea of how the world looks from an autistic perspective.

After taking the time to consider the implications of such a "game," I have a few thoughts. On the one hand, this is a remarkable concept. For almost all my life, I have had to explain myself and what it is like to see the world through my eyes. Individuals on the spectrum are tasked with having to constantly explain ourselves to "neurotypicals," and this is especially daunting when you have difficulty verbally expressing yourself. 

For there to be something like this that could just give people a straight-up lens into my experiences could make a huge difference in extending compassion and assistance to people on the autism spectrum, especially less affected folks who often have a more difficult time getting help because we don't "look" like something is "wrong" with us.

On the other hand, however, this is also a dangerous concept, and one that could do a great disservice to people on the spectrum. There's a saying that goes "If you've seen one person with autism, you've seen one person with autism," and the same holds true for how each person is affected by their autism--some are more affected, some are less affected. 

To truly give the family members or loved ones of a person on the spectrum an idea of what it is like to have autism, you would need to specifically tailor this program to the issues of that individual, because "one size fits all" absolutely does not apply here. 

Another concern I have is that the creators are referring to this as a "game." For those of us on the spectrum, this is distinctly not a game; it's our lives, and what we go through on a daily basis. We can't hit pause, or mute, or turn it off when we don't want to deal with it anymore, and it worries me that neurotypicals who would try this would fall into that line of thinking. 

Also, oftentimes people on the spectrum are described as being "robotic," and it concerns me that a program like this would inadvertently give credence to the idea that we're somehow "not human"; that we're more like computers or machines, and thereby reinforcing that "otherness" and the accompanying stigma that we've all struggled with for so long.

Stepping back and looking at the bigger picture, I can see what the program's creators are trying to do. But I also think that the details are incredibly crucial, and such a program could end up being very problematic on certain levels. 

This program is a significant move in the right direction, and offers the potential to give non-spectrum people a window into autism, and could prove tremendously beneficial to families and individuals in their attempts to obtain appropriate services and supports. But it is far from perfect, and could certainly use a long list of disclaimers, addenda, footnotes, etc. to go along with it.

Review of "Night of Too Many Stars"

A few weeks ago, I was fortunate enough to attend Night of Too Many Stars, an annual autism fundraiser hosted by Jon Stewart and held at the Beacon Theatre in NYC. I was asked by Autism Speaks to write a blog post for them about the event. This was originally published on the Autism Speaks blog on October 20th, 2012 [Link here.]

**

From the moment you enter the front doors of the Beacon Theatre and lay eyes upon the gilded walls and brightly painted ceilings, you are in another world. The Beacon looked to me the way that I’ve always imagined theatres to look like in my dreams: Somewhat magical, and with the power to make you think you’ve left your cares and worries behind, even for just a few hours.

For many people, however, A Night of Too Many Stars had everything to do with our cares and worries, and was the reason why we were there. My friend Nicole and I were seated in the very last row of the Right Orchestra section, but our view was still fantastic.

A collage of differently-shaped television screens hung against a colorfully lit curtain, and white lights dazzled from above in multiple configurations. The house band was situated on the right side of the stage, and the Night of Too Many Stars logo was displayed proudly on the center screen, which served as the backdrop for the main attraction.

And what an attraction it was.

The night flowed almost effortlessly, with Jon Stewart as a steady guiding hand and host. It was my first time seeing him in person, but he looked and made me laugh just like he does on TV.  Some of my favorite moments of the night were watching Jon, who sat crouched over by the band when other comedians or guests were doing their skits, crack up laughing. I’ve always wondered what makes the people who make me laugh laugh themselves, and that night, I got to find out.

As with any live show, the night had its high point and its low point. The low point unquestionably came when they had two girls from “Jersey Shore” onstage, along with a cast member from “The Sopranos” impersonating New Jersey governor Chris Christie. It was absolutely, bar none, a complete flop. All the skit consisted of was the girls swearing for no reason, and “Governor Christie” eating a sandwich and making fun of the girls for no reason. It was painfully unfunny, as evidenced by the fact that nobody in the audience was laughing, and you could hear the collective sighs of relief once it ended.

Then there was the high point.

Throughout the night, they showed videos of some of the various autism programs that the monies raised would be going towards. At one point, a video of a young girl with autism named Jodi was shown. As part of the intensive treatment Jodi has undergone since age 2, she plays the piano; now, at 10 years old, Jodi is a huge fan of Katy Perry.  In the video, she is seen playing the Katy Perry song “Firework” on the piano, and this segued into Jodi playing the same song on piano right there on stage…with Ms. Perry joining her for a duet.

It was one of the most wonderful things I have ever seen. You would have been very hard-pressed to find a dry eye in the house after that number, especially given that it concluded with Jodi getting up from the piano and wrapping her arms around Katy in a big hug. Having played the piano myself as a child, the moment resonated with me on a personal level, but what really made me nearly lose it was when Jon Stewart came back to the stage, his eyes clearly red-rimmed from tears, and how he had to pause because he could not speak for fear of crying.

As exciting as the celebrity-filled moments were, the lens through which I ultimately viewed the evening was what it all means for people on the autism spectrum.  I found myself taking mental notes of things that I would do differently, such as some of the language in the program that we were given. 

Phrases such as “autism robs children and adults of their capacity to function normally in society,” jumped out at me, as did some of the comedians who used parts of their act to harshly make fun of “nerds,” or who said things like “This is what happens when you get rid of bullying.”

Being a person who has lived on the autism spectrum her entire life, and who knows all too well what it feels like to be bullied, I think that I had a different perspective than the majority of the audience. While Night of Too Many Stars is certainly a wonderful, worthwhile event, and I am thrilled that a child with autism was afforded such an incredible opportunity and made so visible, the things that I mentioned above show just how much work there is still to be done.

After I first arrived at the Beacon Theatre and got to my seat, I walked up towards the front of the theatre. There I saw people that I know from several autism organizations, and was happily and warmly greeted by all. In the past, I’ve often attended events where I’m just with the person who “knows people”…but this time that person was me, and in a night filled with so many stars, I felt like I was one of them.

It is my hope that all people on the autism spectrum will have the chance to be the stars of their own lives, and with the continued help of awareness and fundraising events like Night of Too Many Stars, it will one day happen.

Two Steps Forward, Five Steps Back

The above comments (click picture to enlarge) are comments that I recently saw on a Youtube video of Conan O’Brien promoting Night of Too Many Stars, which I was actually fortunate enough to attend this past weekend (more on that later), and which airs on Comedy Central this weekend.

To say that I was disheartened when I read these comments is a complete understatement. A great sadness overwhelmed me, followed swiftly by pain-fueled anger; not a sudden, unprovoked rage; but a rolling boil of frustration that never fully goes away, but instead just gets quieter or louder depending on the circumstances.

I know what the response of many people might be to this: They'd tell me that these are random Internet trolls, Youtube is a cesspool of stupid comments, and that there’s no point in paying them any mind. The reason that these comments bother me, however, is that I truly feel like they represent a cross-section of this country, and of the world. They represent the people who have a passing acquaintanceship with autism, but have no reason to ultimately care about it.

These are the people who interview us for jobs. The people who decide which laws to pass and whether people on the spectrum will have their medications/services/supports covered by insurance. These are the people who see us in the supermarket, or on the bus, or at the mall, and cast dirty looks in our direction.

And, in some cases, these are the people who work in special programs, schools, and group homes looking after the welfare of people with autism.

That’s why these comments bother me. Because this is the world that people on the autism spectrum have to live in. It’s the world that I have to live in, and it frustrates me that, despite all of the awareness-raising and advocacy work that I and many others have done, people can still cling to these tired notions and view autism in such a negative light.

I’ve heard time and again that the hardest people to bring on board to autism-related causes, to solicit donations and support from, are people who have no connection to autism. My battle is more for hearts and minds than for wallets, but I am starting to see that the fight is just as uphill. I’m not going to stop fighting, even if things like this do make me feel like I’ve lost my footing for a moment.

But I can’t deny that things like this make it all feel like that much more of a challenge.

Autism Speaks "Autism Votes" Ad Campaign

A few weeks ago, I was asked to participate in the filming of an ad campaign put together by Autism Speaks called "Autism Votes," which is aimed at getting politicians to focus on autism as an issue in the coming elections this November. The campaign has since been released, and I was chosen as one of the featured speakers in the video:

 

In addition to the video, a few other speakers and I were personally profiled on the Autism Speaks website. Below is the testimonial that I wrote explaining why autism is important to me, a self-advocate and college coach for students with AS, as an election issue:

"When you’re running a campaign, you want voters to focus on what you can do, as opposed to what you cannot. You want to draw attention to your strengths, rather than your challenges. It is exactly the same with autism. Individuals on the autism spectrum spend much of their lives being told what we cannot do, instead of what we can do. 

From the first moment of diagnosis, we are given a laundry list of all the challenges that accompany autism, all the things that we will struggle with for the duration of our lives, and the notion that because we have autism, our lives will never have the quality of persons who do not. 

Although I was not fortunate enough to benefit from scientifically validated interventions such as ABA (Applied Behavior Analysis), it and other autism-related services have the potential to help thousands of other individuals on the autism spectrum and their families. Awareness of autism is on the rise, but we need an elected official to stand up and represent us.

I want a politician who is on my side, who listens to my concerns and gives weight to my voice, and to the voices of all people living on the autism spectrum.

I want to know that politicians will work with me and with other self-advocates and professionals in creating and shaping national policies that affect individuals with autism and their families.

I want improving the quality of life for adults and children with autism to be one of the most urgent priorities on our elected officials’ agendas.

In the election, the votes of people with autism and their families will be counted, but it is up to the politicians that we elect to make our votes count."

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While I personally do not agree with characterizing autism as a "public health crisis," I am glad to have had the opportunity to speak out on autism as a topic that must be addressed by our elected officials. 

Also, I will be doing my best to update this blog with more regularity, as I have a number of projects on tap at the moment that I am excited to share with you all. Please stay tuned!