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.

Recent Public Speaking Appearances and Events!

The last month has brought a wave of several wonderful events in which I am proud to have participated. First, there was Autism New Jersey's annual conference, held on October 17-18th in Atlantic City, NJ, at which I spoke on the Self-Advocate Panel. The panel went on to receive a mention on Autism New Jersey's "Conference Highlights" page. Here I am with the other self-advocate panelists:

Left to right: Kerry Magro, Amy Gravino, John Richardson, and Lindsey Nebeker.

That same weekend, on October 19th, I co-presented a workshop on autism/Asperger's Syndrome and sexuality with Dr. Peter Gerhardt in Richmond, Virginia. The presentation--titled Sexuality & Sexuality Instruction for Individuals with Autism Spectrum Disorders: What Everyone Needs To Know--was co-sponsored by Virginia Commonwealth University and the Autism Society of Central Virginia:

 

With Dr. Peter Gerhardt.

I want to thank Autism New Jersey and Dr. Gerhardt from the bottom of my heart for inviting me to be a part of these presentations. The response and feedback that I received from members at both presentations was tremendous. The workshop with Dr. Gerhardt was a liberating and thrilling experience in particular, and was the first of what I hope will be many more presentations on the subject of sexuality and autism. It is my goal to become a more recognized authority on the subject, both as a professional speaking from a clinical standpoint and a person on the spectrum coming from a personal perspective.

Want me to come speak at your school or organization? Any and all public speaking or media inquiries should be directed to my business manager, Nicole Turon-Diaz.

In Plain Sight: Thoughts on the Center for Autism and the Developing Brain

The life of a child with Asperger's Syndrome is often filled with routines: Those that are built for us by others, and those that we create ourselves. The structure of a day divided into evenly-timed segments is a source of comfort, of knowing for certain what will happen next. When the time is ours, the routine is different, but it is made of our own determining, borne from the desire to possess the smallest amount of control over our lives.

I remember being buckled in my parents' car, the arms of the straps across my lap and chest holding me close and the humming engine vibrating under my feet. It didn't stop until we were parked in front of a strange building with too-shiny windows and loose pebbles scattered across the unsmooth asphalt.

That was when a new routine began.

I am no stranger to the inside of an office: Offices in child psychology buildings, offices of occupational therapists, social workers. An endless procession of white coats and sweet-strong perfumes and colognes wafting in and out of every door, applied liberally as if to conceal the sterile odorlessness of those rooms. Every place I went seemed shrouded, far from the public's view, tinted glass keeping the broken children hidden.

This same thought passed through my mind when I recently paid a visit to yet another such facility.

Situated in the verdant hills of White Plains, the Center for Autism and the Developing Brain (CADB) sits on the edge of treatment and care for individuals with autism across the lifespan. A casual stroll onto the Westchester campus of New York Presbyterian Hospital--where the Center is located--reveals that the building in which it resides was a men's gymnasium in a past life, back in the days when individuals with mental health issues did not live at home, but instead received long-term care at a "convalescence" facility.

A few weeks ago, I joined several of my GRASP colleagues on the campus for the annual conference of AFAA (Advancing Futures for Adults with Autism). As part of the conference program, a presentation highlighting longitudinal studies of individuals with autism was given to us by Dr. Catherine Lord, who is the founding director of CADB.

Later in the day, we received a full tour of the Center, which was also given by Dr. Lord. Visiting the Center left quite an impression on me, though even now I am not sure if it is a good one.

In the main room of the Center, the ceiling is high and open--remnants of the gymnasium from the days of yore. In the middle of the room is a playroom/gym, strewn with toys and activities, and rows of observation rooms line the perimeter surrounding it. A tall and thrumming fluorescent light acts as a divider in between, and toward the entrance are glass display cases, each covered in a grid-like pattern and brightly back-lit.

It was these lights that caught my immediate attention, the whiteness being so stark as to jar my eyes from the earthy, calm tones that dominated the rest of the decor. Though I have never had extreme sensitivity to light, several of my colleagues did, and found themselves quite discomforted in the presence of those lights.

When I later visited the CADB's website, I was surprised by what I found: Multiple references to the "soft" and "natural/soothing" lighting (the references in links two and three are in the captions on the pictures on each page). I don't know for whom those lights actually are soothing, but I would have expected a bit more consideration to have been made in the design of a facility in which treatment is provided for individuals with autism.

As I walked through the still and silent corridors that day, I felt the memory of all those offices returning to me. Behind the toys, the cheery colors, the lush, green leaves of new plants, was that same all-consuming feeling that I found as inescapable then as I did when I was a child:

I am here because something is wrong with me.

Awareness about and visibility of autism and autism spectrum disorders has come so far since I was a child, as have ideas about treatment and embracing neurodiversity. Yet in spite of all this, the feeling of being "different" persists, and is augmented by the fact that a swing set surrounded by four walls and a two-way mirror is a far cry from a swing set on a playground bathed in sunlight.

At the time, I don't think I fully understood why I had to go to all of those offices, but I was always, always aware of being away from the light.

The very existence of CADB is tremendously promising, however, and represents a step in the right direction. It is my hope that facilities such as theirs will incorporate input from individuals on the spectrum into their design--the design of their buildings and of their programs.

It is we who spent so much time in these places growing up who can offer the best insight into how to make the experience a better one for individuals on the spectrum--not only while they are there receiving treatment, but as a positive foundation for the rest of their lives.

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.