Dear Jxxxxxxn

I've heard a lot about how it can be cathartic to write a letter to someone that you'll never be able to speak to, and so I decided to write this. It felt incredibly good to get all of this out, even with it being this many years later. So here it is:

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Dear Jxxxxxxn,

I don't know why I'm writing this letter.

I don't know what I can say to you, eight years later, that would bring me any more closure than what I had to find by myself. Because you never looked me in the eye and said it was done. Never saw my face and the tears streaming down my cheeks. Your message of finality was sent to me online, or in half-eaten phone calls at random hours of the day and night. 

It was in the box that you left outside my apartment building at seven a.m. one day, along with the monogrammed journal I'd gotten you for your birthday.

I could tell you that things have gotten much better since I last saw you. The broken girl, the shell you left behind has filled back in and is complete again. Complete not because I know I'm okay even though you're not here, but because I know I was okay even when you were there.  You don't make me more or less. I am better not because you are gone, but because I  have finally arrived.

I remember you messaging me once, months after everything happened, to tell me that you were sorry for ruining my life. 

I was as angered by it then as I am at peace with it now. You don't owe me any apology, silly, because you didn't ruin my life. In fact, it's because of you that I know what being in love feels like. I know now that you didn't feel that way about me, but it does not make what I felt any less real. 

I loved you very much, you see. It surprised me how much I did, because I had no idea I could feel that deeply for someone. I thought being on the autism spectrum meant that I would never fall in love, but you proved me wrong. I learned that I could give my whole heart to someone, that I could feel tingly and slightly nauseated (in a good way) at just the thought of seeing someone, all at once. I learned that I could lose myself in love and find my way back, no matter how long or hard I fell.

In the end, you tore my heart out and stomped on it. As high as the high of being in love was, the low of losing it was the lowest I've ever gone. I felt everything and nothing at the same time, a pain so profound it just bled into numbness. Sometimes I still wonder if any of it was real, for you. If you ever actually felt anything for me. But I don't need the truth from you anymore. It wouldn't matter even if you told it to me.

You didn't fall in love with me, Jxxxxxxn. But I think instead I got something a lot better, something that maybe wouldn't have happened without you.

I fell in love with me. 

And I'm still standing.

Sincerely yours,

~*Amy Gravino

I Wanna Hold Your Hand: Getting Intimate with Autism

[Note: This was originally published on the blog of Autism Speaks, for their "In Our Own Words" series. Any and all feedback is very much appreciated!]

When I was 15 years old, a boy moved in across the street.   He was, of course, the cutest and dreamiest boy I’d ever seen, with his green eyes, freckle-covered pink cheeks and a bowl haircut that would’ve made Julius Caesar proud.

More than anything, I longed to be close to him—to see my almost-immediate crush on him blossom into a full blown relationship—and when we’d hang out in his room after school, I was constantly glued to his side.

“Amy, come look at something on the computer.”

Whoosh! Now I’m three inches from his face, staring intently at him instead of the screen in front of us. In my mind, physical closeness equaled emotional closeness; because I did not have the tools or understand how to create the latter, I (over)compensated with the former. 

An early harsh lesson in intimacy.

What no one told me then, and what I didn’t realize until years later, is that intimacy takes a long time, and it is not something you can force into being. It starts with trust, with the willingness to allow someone into your personal space, and vice-versa, and it grows with the aid of continual and clear communication.
Intimacy is being naked with someone with your clothes on.

On a visual level, there are certain actions or gestures that we know and interpret as intimate: Kissing. Touching someone’s face, hands, or other body parts. Not only do all of these tend to present a challenge for individuals on the autism spectrum who have certain sensory issues, but visual depictions stop at the surface, and are merely the tip of the intimacy iceberg.

For people on the spectrum, intimacy can and often does look different from how it is for neurotypical folks. Sometimes intimacy is simply sitting quietly in the same room with someone, tolerating their presence in your private environment. Whatever form it may take, intimacy runs deep, and there is no one way—no right or wrong way—to be intimate with someone.

When I was 22 years old, I had sex for the first time.

I believed, as had been the case in almost every movie I’d seen up until then, that after we finished making love, there would be some sort of cuddling. I felt prepared for this, certain of its inevitability, and when he returned from the bathroom after washing up, I turned to him expectantly.

“No,” he said, facing away from me, when I asked if he wanted to cuddle. “I’m really tired.”

So I let him be, and laid there in the suddenly cold bed, sleeplessly staring at the ceiling and wondering what I had done wrong.

Intimacy is unselfish.

To achieve true intimacy, all parties involved must have their needs taken into account—another challenge that I have faced as a woman on the autism spectrum, as I believed for so long that, because I could not always articulate my needs, everyone else’s needs mattered more.

In addition, having a dearth of opportunities for intimacy meant trying so hard not to screw up the few chances I did have. But being so afraid to make a mistake—mistakes that are far more easily forgiven when you’re not on the autism spectrum—only made me (unwittingly) put undue pressure both on myself and my partner, and those experiences were not very enjoyable as a result.

Above all else, intimacy takes work.

Intimacy takes patience, kindness and a whole lot of understanding. There will always be people trying to solve the great mystery of intimacy, and there will always be shelves full of self-help books and angst-filled rock n’ roll songs on the subject.

Intimacy challenges neurotypical and non-neurotypical individuals alike, but the difference is that it is actually acknowledged that intimacy is something that neurotypical people want.

Individuals on the autism spectrum often have to take a different road to arrive at the same destination, but our journey is no less valid.

And the first step starts with seeing us as people who have those desires and needs, and who are as capable of understanding and learning intimacy as anyone else.

October Speaking Appearances!

Hello, folks! Just wanted to share with you that I will be speaking at two autism conferences this month. The first is AHA-NY's 24th Annual Fall Conference, at which I will be giving my first ever keynote address, on my experiences in school as a child on the autism spectrum. The conference will be held at Eastern Suffolk BOCES in Holbrook, NY on October 20th:

(Click here to view conference brochure)

The second speaking engagement that I have lined up is a workshop on autism and sexuality at Autism New Jersey's 32nd Annual Conference, which I will be co-presenting with Dr. Peter Gerhardt and autism self-advocate Jason Ross. The conference will be held at the Atlantic City Convention Center in Atlantic City, NJ on October 23rd:

(Click here to view conference brochure)

Audio recordings of both presentations will be available after the conferences, and I am hoping to possibly have my keynote speech video-recorded. I will post links to all recordings as soon as they are available. And if you're anywhere near either of these conference venues, I'd love to see you in person! Plus, you'll be in for a great day or two of informative and interesting autism-related presentations and discussions.

Thanks, everyone, and keep checking back for more posts about future speaking appearances!

The Butterfly and the Bear

Once upon a time, there was a butterfly and a bear.

They became friends when they were little, fast frends, because the bear didn’t get along with the other bears and the butterfly didn’t get along with the other butterflies. They met and became friends because they thought they were the same.

The butterfly and the bear stayed friends for many happy years, fluttering/walking side by side (respectively). Despite their differences, no one could tell them that they weren’t alike. The butterfly thought, The bear is an animal, and I’m an animal. We’re both animals!

Over time, the bear grew bigger, and the butterfly did, too. The bigger they got, though, the more the butterfly noticed how big the bear’s shadow was. The bear made long strides with its four feet, moving faster than the butterfly could keep up with, even though it flapped its wings as hard as it could.

Most frightening of all was when the bear began to stand on its two hind legs and roared in the butterfly’s tiny face. The butterfly had never heard the bear make such a sound before, not in all the time they’d been friends, and a new, very strange thought came into the butterfly’s head:

Maybe the bear and I are different…

Such thoughts unnerved the butterfly, and it quickly shook them off and flew back to the bear, hoping that if it reminded the bear they were friends, the bear would stop roaring.

The only thing the bear did was roar some more.

Soon the butterfly could not take the bear’s roaring, so loud and chilling that the butterfly saw the bear not as its friend, but as something that could hurt it. And that made it all the worse—knowing that the bear could hurt the butterfly and not care if it did. Worse, even, than the bear actually hurting it.

Eventually, the butterfly stopped seeing the bear, as it hid deep in its dark cave, eschewing sunlight and the butterfly’s company in favor of a solitary, cold existence. The butterfly sought out other butterflies—some blue with white spots, some orange with patches of black, and even some yellow ones. Suddenly the butterfly felt alive, more at ease, and loved, things it had never felt before. The other butterflies flapped happily whenever the butterfly came near, so unlike the fearsome roar of the butterfly’s old friend.

…But the butterfly could not forget the bear entirely.

It was late the day the butterfly saw the bear one last time. Streaks of pink and purple-y blue lined the horizon, a cloudless backdrop so fitting for a moment of clarity.

The bear invited the butterfly into its cave, and the butterfly reluctantly accepted. It did not know what to expect—Had the bear learned to stop roaring? Did it remember when it and the butterfly were friends? Questions to which the butterfly had so longed for answers, and that it now hoped to get.

Slowly, the butterfly flew into the cave, peering into the darkness for any sign of the bear. The further inside the butterfly went, the more the light dimmed. The smell inside the cave was like decay, as if the life inside had all but disappeared. And finally, after flapping all the way to the back of the cave, the butterfly found the bear, and was horrified by what it saw.

The bear’s once-soft fur was matted, covered in dirt and dust. Its strong legs were splayed apart and immobile, as if the bear had stopped walking after its and the butterfly parted ways. And the bear’s eyes, previously warm and gentle, had grown cold and distant, fully devoid of their long-lost sparkle.

Before the butterfly could even ask the bear what had happened, it lifted one still-working limb and swiped at the butterfly, its razor-sharp claws tearing, and it missed the butterfly’s heart by only the barest inch.

The now-wounded butterfly turned from the bear and flew from the cave—as much as a wounded butterfly can fly—and did not stop until it reached the cool night air. Relief coursed through the butterfly’s veins, and it finally came to rest on a tree branch nearby.

The bear is not my friend anymore.

Relief. Sadness. Despair. The butterfly knew them all in that moment, unable to stop the tiny tears springing from its eyes. It thought of what the bear once was, compared to what it had become, and knew the only thing left was to return to the other butterflies and leave the bear behind.

The butterfly needs time to heal. The scars won’t ever fully fade away.

The butterfly has come out from under the bear’s shadow.

The butterfly is free.

Thoughts on Depression and the Death of Robin Williams

You came to visit me today.

You sat next to me in Science class, somewhere between kingdom and phylum. Nobody else saw you come in, of course, because you're sneaky. You looked like the boy in the flannel shirt and Reeboks, but I knew it was you.

We're not supposed to talk in class, but you did it anyway. I heard you whispering about the blinds being closed so no light could come in, and how it would always be that dark. But that classroom was always dark, and I couldn't remember when it wasn't.

Suddenly, you were sitting on my chest. I didn't see you move, but I felt you pressing into me, felt the weight bearing down. You told me that eleven or twelve years was enough, that the rest would all be the same, that there would never be anything new or different. Or better.

You were inside my head. I couldn't breathe.

That was the first time that I saw the appeal of the neck-length tape measure wrapped around a hook in the cubby.

---

Earlier this week, our collective hearts were broken and our spirits devastated when beloved comedian/actor Robin Williams passed away. He took his own life at the age of 63, and after hearing the nature of his death, I have started to remember my own experiences with depression and suicidal thoughts, which started when I was in elementary school.

It's not something I have occasion to speak about very often, nor that I particularly like speaking about. The memories, what few of them remain, are too painful to revisit. I've attempted to describe it via the passage above, but the difficult part to reconcile is that this didn't happen just once; it happened over and over and over again, in different settings and to varying degrees all through my school career.

When you are young, you don't fully understand the finality and permanence of death. As the thought of suicide grew in my mind, what I believed was that killing myself meant killing someone that everyone hated, and that if I eradicated that part of me, I would return, somehow, as someone that everyone loved.

To this day, I am still not sure what kept me from doing it. Speaking in practical terms, I couldn't overdose because I wasn't able to swallow pills at the time; I was afraid of blood and sharp things, so that ruled out a slightly more violent end; and I didn't have the necessary fine motor coordination skills to make a noose. It reads like a comedy of errors, but I feel that these obstacles were put in place almost by design. I remember thinking of each of these things as one failure after another on my part. I felt that I was a failure at life...and then I was a failure at death, too.

That was what depression told me.

What it didn't tell me was that I wasn't alone. That there were and are so many others, like Robin Williams, who suffer quietly, wanting and hoping for things to be different, but who feel trapped, isolated, and lost in their despair.

Though I did begin taking Prozac for the depression at age 12 (and voluntarily stopped when I was 15), the cloud only began to lift after I left high school, when--for the first time that I could really remember--people saw me. They saw that I was here, that I existed, and that maybe I was even a good person. Their voices became louder than depression's voice, and at long last, I could breathe again.

I know that I got very lucky.

My story is only one story, and depression affects other people in all sorts of different ways. We have a very long way to go yet when it comes to discussing mental illness and suicide, and the stigma that surrounds these issues will never go away unless we start talking about them.

If nothing else, I hope the death of Robin Williams will be the beginning of this desperately-needed change.

I only wish he could be around to see how it ends.

---
[If you are having imminent thoughts of suicide, please consider calling the National Suicide Hotline at 1-800-273-8255 (in the U.S.), or visit their website.]

Position Statement on Autism Speaks

For several months now, I have been struggling with how to write this.

I had hoped that I would never feel the need to do so, but over the past few weeks in particular, I have received random messages on Facebook and tweets from people telling me not to support Autism Speaks. These faceless message-senders are strangers, folks to whom I have never before spoken, but who feel the need to step into my space and tell me what to do. That is something of a problem, if for no other reason than because my relationship with and feelings toward Autism Speaks are far from black-and-white.

First of all, let me be clear from now on one thing: This is not a “defending Autism Speaks” post. I have seen numerous posts circulating on sites such as Tumblr talking about how Autism Speaks is "evil" and no one should support them. The truth is, the grievances that some people have against Autism Speaks are absolutely justified, and I am in no way here to diminish their experience or tell them they aren’t allowed to feel what they feel. In fact, I am on the autism spectrum myself (diagnosed at age 10), and have been appalled by many things that Autism Speaks has done over the years.

So that is why, when I was invited to join the Communications Committee of Autism Speaks three years ago, I said ‘yes.’

Huh? Wait a minute…what? you may be asking yourself right now. The reason that I accepted this position is because in the course of being aghast at many of Autism Speaks’ past actions, I also realized that they have an incredible platform, a place of visibility in the neurotypical world that is unmatched by any other autism organization. The enormity of Autism Speaks also means that—as much as many of us wish otherwise—they are not going away anytime soon.

I joined the Communications Committee (which deals with the public campaigns and partnerships of Autism Speaks) because I saw it as an opportunity to make changes to Autism Speaks from within.

Has progress been made over the last three years? Absolutely. Has enough progress been made? Sadly not. But it is a slow process—so slow, sometimes, that it’s unbelievably frustrating. One important thing to note, however, is that the people with whom I am in contact are in no way supportive of the “cure” rhetoric that was the previous trademark of Autism Speaks. That was a mindset that came with the organization’s founders, but to which very few of the people there still subscribe.

It’s not enough that I know that, but the public overall does not. That change has not trickled down, has not shown in much of the media put forth by Autism Speaks. And that is one of the things I am trying to make happen by being on this committee.

When I sit there in the committee meetings, it becomes my job to operate as the eyes and ears of the entire autism community. It becomes my job to be the voice for individuals on the spectrum, a task that is in no way easy because I know that not everyone is coming from the same place that I am, nor has everyone's experience with autism has been the same as mine. But I am in there to speak for you, to make your concerns—which are also my concerns—heard.

The simple truth, and the one thing that I always try to keep in mind, is this: They’re not going to hear it if I’m not there to say it.

My reputation with Autism Speaks has become one of being the person who will not sugarcoat things, who will not hold back, and who will be tough on the organization because I know that it can and should do better. I have met and spoken to Autism Speaks’ executive director, Liz Feld, herself, and told her as much. I have also purposely gone to Autism Speaks events where there are big donors in attendance to make sure that no one loses sight of who they and Autism Speaks are supposed to be helping: People on the autism spectrum.

As I have stated previously, it is my belief that working from within is the best way to effect change. I hope that by using the capacity I am afforded as a member of the Communications Committee, I can create an honest and open dialogue about the concerns, grievances, and needs of the autism community with Autism Speaks, and by doing that, change can and will happen.

Thank you.

Amy Does TED!

On April 11th, I had the very exciting opportunity to speak at the TEDx conference at Seton Hall University in New Jersey! One of the organizers for the conference had asked me several weeks prior if I would be interested in participating, and though I had never done a TED talk before, I was happy for the chance to do so and bring my story to a new crowd. Here is the program from the evening's events, with the biographies of each speaker (listed in order of appearance):

The theme of this TEDx conference was "(R)evolution" (a combination of both evolution and revolution). Each speaker came from very disparate backgrounds and spoke from a variety of world views, and for my talk, I spoke about my personal evolution as a woman on the autism spectrum, and then the revolution that we're starting to undergo in society with how we look at autism and at disability overall, and how much farther we have to go.

I'm very happy to now share with you all video of my TEDx speech. The quality is unfortunately not the best, so you may need to turn your volume up to hear properly. Please feel free to share this as well, however you see fit.



I'm so glad that I had this opportunity, and I hope I will have the chance to speak at more TED talks in the future!

Liebster Award and Welcome Back!

Happy almost-Summer to all my faithful readers! I apologize for neglecting you all for so long--unfortunately, life got in the way and I haven't been able to update this blog. So much has happened that I am excited to share with you all, but for my first post in almost six months, I would like to answer some questions that were given to me by Kirsten Lindsmith, who kindly nominated me for a web project known as the Liebster Award! Kirsten has given me several questions to answer, and so here are the instructions for the project, copied from her blog:

There are a few easy rules you must follow to participate:

1. Acknowledge the blogger who nominated you and display the award.
2. Answer eleven questions that the blogger gives you.
3. Give eleven random facts about yourself–they can be anything!
4. Nominate eleven blogs that you think are deserving of the award
5. Let the bloggers know you nominated them.
6. Give them eleven questions to answer. (I'm not going to nominate anyone because I wouldn't begin to know whom to choose or how to be sure they'd even see the  nomination.)

~*~

Eleven questions from Kirsten:

1. What prompted you to start your blog? I started it because I felt that I needed a place to share my thoughts and feelings on issues related to autism, Asperger's Syndrome, and current events related thereto, and because I wanted to keep folks up-to-date on my own life and ongoing professional projects.

2. For the autism blogs: What was your first introduction to the “autism community”?
I can't remember a time when I wasn't involved in the autism community, to be honest. I was diagnosed at age 10, and was always on the periphery of AHA-NY from that point on (especially after my mother joined the Board of Directors). But I would say that I became more actively involved in the autism community around the time that I started graduate school, in 2007.

3. What is your Myers-Briggs Type Indicator (MBTI) personality type?
I haven't taken it in a while, but I believe I am an INTJ or INFJ.

4. Do you consider yourself an introvert or an extrovert? Why?
I consider myself an introvert with extrovert tendencies. I've become much more outgoing over the years, but I still feel drained of energy if I spend too much time around people or being social, and ultimately I need to have time by myself to recharge my batteries.

5. What is one book, movie, or television show that you absolutely love?
Oh, this is impossible, because I love so many! I guess I will go with TV show and choose Buffy, the Vampire Slayer, as it is responsible for helping me survive my hellish high school years and I can rewatch the episodes over and over and still enjoy them and see things I never noticed before.

6. What is one song you love that never gets old for you?
As anyone who knows me knows, I'm a big fan of the 1960s group The Monkees, so I'd have to say their song "Pleasant Valley Sunday," because it has such a great opening lick, and Micky Dolenz is an amazing singer.

7. What kind of computer do you use?
I use an HP Pavilion laptop that is probably on its last legs but is still so good to me even when I get frustrated with it.

8. What do you take more pictures of: yourself, or other people? (Animals count as other people!)
Honestly, I don't really take many pictures at all. I used to photograph my food all the time (the dishes that I make), but I haven't been doing that as much lately. I've never felt that comfortable taking pictures of people, mainly because I am a writer, not a photographer...but I do enjoy taking pictures of objects or nature or whatnot.

9. Who was your first pet? Tell me about them! (breed, name, etc.)
My first pet was a Calico cat named Pumpkin. She was a good kitty and some sixteen years old when we finally had to put her down. 

10. Do you have any pets now?
Yes, another Calico cat, named Pallas (short for Pallas Athena, the Greek goddess) who lives at my parents' house. In our family, we've always had Calico cats and their names have always started with the letter "P" (I think it must be an Aspie thing!).

11. What is your earliest childhood memory?
My earliest childhood memory--if it even is a real memory and not just something I've convinced myself happened, but didn't really--is of being in a stroller at Knott's Berry Farm (near Anaheim, California) at the age of 3. I just remember being surrounded by a sea of legs, outfitted in various brightly-colored shorts, and feet in sandals walking, walking, walking everywhere.

~*~

Eleven facts about me:

1. I was born five weeks early and a breech birth (came out butt-first).

2. My smallest toe on both feet isn't on the end (it's second from the end) and the year the "toe sock" craze happened was not a good one for me.

3. I'm irrationally afraid of the eyes on potatoes (when they sprout).

4. Despite lifelong gross motor coordination issues, I have never broken a bone in my entire body.

5. My father is a retired Latin teacher, and by the age of three, I'm fairly certain I knew as many (if not more) Latin words as I did English.

6. Learning how to cook helped me overcome a tremendous number of my eating-related issues, and cooking has become my first-ever true "special interest."

7. I've typically preferred neurotypical guys over guys on the autism spectrum, but after having dating experiences with both, I can safely say that all men are ridiculous and incomprehensible, regardless of neurological makeup.

8. I have more friends now than I did in the first eighteen years of my life put together.

9. When it comes to helping myself, I often struggle and can't make a clear plan, but when it comes to helping others, I can immediately see what needs to be done and have a far easier time with that.

10. I do not have any tattoos or piercings (not even my ears).

11. I didn't get my driver's license until I was 24, and though I was frustrated at not having it earlier, I'm now very glad that I got it when I did.

~*~

Well, that's it! Thanks very much for reading, and please stay tuned for several more exciting upcoming posts about all my latest happenings and adventures. Keep your peepers peeled!

Post-Christmas Reflections

The last embers of the holiday are still dying down, and I have gathered in their glow to collect my thoughts on the day's events.

This Christmas brought with it an ending, and many new beginnings as well. Ever since I was a little girl, I have written a letter to Santa every year on Christmas Eve and placed it on the kitchen table with a plate of cookies and an empty glass for milk. And every Christmas morning, without fail, I would turn the paper over to find a handwritten response from “Santa” (my dad). I’ve continued the tradition on for symbolic purposes, but after a great deal of contemplation, I decided that this will be the last year for the letters to Santa.

I knew that I wanted to send the tradition off with affection, and after searching through family photo albums, found this picture of my father and me from when I was a child:

Dad and his little girl, 1988.

I was able to scan the picture, then edited it to look like a Polaroid picture, put it in a Word document along with my final Letter to Santa, and placed it on the kitchen table for him to find.

Yesterday, I attended two family Christmas gatherings, and in both instances, was the only person present who was not part of a couple (married or in a relationship). I (literally and figuratively) stood outside of my relatives, watching and observing their interactions, and realized deep down that I am different from them, and I always have been. In the past, I thought that my being different meant that I was less, somehow; that I did not deserve to be related to them. But what I now know, through wisdom and experience, is that I can be different from them, and we can still be family.

That is what Christmas is: Finding a place where the people that you love become the true bearers of comfort and joy. All through the day, I could feel the presence of those who have passed on—Grandma, Grandpa, great-Aunt Lollie, and more—and I know that they have also been folded into the fabric of Christmas. The fact that I knew them and loved them is a greater gift than anything inside ribbon and bow-festooned boxes sitting under a tree.

In many ways, a letter to Santa isn’t so much about presents, but having just the briefest moment to have someone listen to what you have to say. I yearned for that as a child, thirsted for it…but now, my cup is nearly overrun. It happened gradually—Christmas by Christmas, in tiny, tiny increments—but the letters have fulfilled their purpose, and though they and Santa will always be in my heart, I am honored to say a quiet, respectful goodbye.

Farewell to one chapter of life. Onward and upward to the next.

A Response to "An Open Letter to Autistic People Who Support Autism Speaks"

[This blog is a response to this post from Queerability, in which myself and other individuals on the spectrum were specifically called out for our affiliation with Autism Speaks. I advise my readers to view the above post first before reading my response below.]

Before I begin with this post, I'd like to state for the record that I can speak only for myself and to the experiences that I have had since I started working with Autism Speaks. Those of us who have been involved with the organization will each have a different perspective on it, so what follows are my views, feelings, and thoughts, and do not represent those of any other self-advocates.

From elementary school through high school, I was bullied almost incessantly. Typically by one particular girl and her group of friends, but other kids were not shy about joining in from time to time. They saw how I acted--my social difficulties and the sensory challenges--and what it all added up to was one very strange little girl wandering those hallways. 

But the picture they saw was incomplete. There was so much more to me than that. More than what they were glimpsing in those few, brief moments. More that they never ended up seeing because they didn't bother to look closer.

As I've gotten older, I've come to realize that this is quite true for a whole lot of things.

When I first began working with Autism Speaks, I remember having a distinct awareness of the polarizing presence that they had and have in the autism community. I had heard so many horror stories and read so much negativity on various pages and forums on the Internet, and it made setting foot in their NYC headquarters for a meeting to which I'd been invited feel not unlike walking into the belly of a very large beast.

As time went on, I developed connections with people who worked for the organization, and was surprised by the contrast that existed between these individuals and the portrayal of Autism Speaks that I had previously read. They saw my opinions as valuable, listened to my words, and I began to believe that having this connection provided me with a golden opportunity to help others who are on the autism spectrum.

I also had opportunities to raise my own profile in the autism world. Two years ago, on World Autism Awareness Day, I was invited to speak on a panel at the United Nations in New York City. I was the only self-advocate on the panel, and of the four speakers, my speech received the longest amount of applause. Simply put, that would never have happened without Autism Speaks.

In the last few years, criticism of Autism Speaks has continued to rise. I have found myself troubled at times with what all of this means, and whether I am right to be involved with the organization at all. Time and again, I have seen posts on Tumblr and Facebook about the terrible things that Autism Speaks has done, and each post has further fueled the fires of my continued inner anguish.

But things are never as simple as we would like them to be. So many of these posts make things come across as very black and white--good vs. bad, light vs. dark, and so on. In reality, however...there is an incredible amount of grey.

In 2011, I was invited to take a volunteer position on the Communications Committee of Autism Speaks. I did so because I believed it was a great opportunity to represent individuals on the spectrum, and to work from the inside to make changes to the organization itself.

It has always been my belief that working from within is one of the best ways to cause change. I believe change is possible because I have seen it, because the people with whom I have contact do not subscribe to the views of those in the higher up levels of the organization. I have seen the strides that Autism Speaks has made in the last few years because those people were open to hearing what I had to say, and I know change can and will continue to happen.

Within the Communications Committee, my task is an unfathomable one, and that is to speak for untold numbers of people on the spectrum. To the best of my ability, I represent them, make damn sure their voices and concerns are heard, and try my hardest to ensure that the public campaigns of Autism Speaks reflect that.

It is not easy.

I am also involved with other autism organizations to varying degrees, including being a member of the Board of Directors of GRASP, and so I know the difficulties that have arisen when attempts have been made to create a dialogue with Autism Speaks.

I know that there is a massiveness, a “bubble” around Autism Speaks that, because they are so highly visible, clouds their ability to see others around them. I know it creates denial when something is wrong, or when there is a problem, and that is why I have continued to stay on the committee: To be that voice that they would otherwise never hear.

When John Elder Robison resigned from his positions with Autism Speaks, it shocked me. The criticism that I received in the wake of his resignation took me aback more than I imagined possible. I have had my decision to continue working with Autism Speaks compared to being in an abusive relationship—an analogy that is extremely problematic, not to mention damaging to actual victims of abuse. I've also been accused of being "bought" by Autism Speaks, a statement that would be much more insulting if it were not so completely ludicrous.

The common link in both of these is the questioning of my integrity, and the implication that I am being manipulated by those around me. I've been the victim of manipulation in the past, that much is true. Being on the spectrum, I've often been in a far more vulnerable position than my neurotypical counterparts. But for people who do not even know me to cast such aspersions on my character is something I simply cannot understand. The decisions I have made have always been mine alone, and are not the result of undue outside influence. I am not a puppet of Autism Speaks. I speak for myself.

While I can most certainly understand people on the autism spectrum taking issue with Autism Speaks as an organization, I was rather disturbed to be called by name in the "Open Letter." I have never concealed my affiliation with Autism Speaks, and am willing to openly discuss it and any concerns people might have if I am contacted privately.

To call me and others by name, however, is to give people a target at which to aim, and it is how witch hunts (even virtual ones) get started. It is also worth noting that calling people out in a post does little to bring about sympathy for someone's cause, because if those people do become targets, they will end up being far too busy looking over their shoulders in fear of an attack to help you out very much.

Autism Speaks is a massive presence in the autism world, and they are not going anywhere. They are also very far from perfect, and I believe the best course of action is to work with them, because no one can move a mountain with their bare hands. Sometimes the process is unbearably frustrating; still, I push on and continue to remind Autism Speaks that I and others on the spectrum are a force to be reckoned with.

In the days following his resignation, I spoke to John Elder Robison and told him of my concerns and personal struggle with being involved with Autism Speaks. Much to my great surprise, he expressed support for my decision to continue acting as a member of the Communications Committee, and said,  "Amy, I encourage you to stick with the communications work. I still believe in change from within."

But it cannot happen if I am and others on the spectrum are not there to help make it happen.