Wednesday, August 13, 2014

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.]

Saturday, June 14, 2014

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 your experience or tell you that you aren’t allowed to feel what you 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.

Friday, June 6, 2014

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:
https://kirstenlindsmith.files.wordpress.com/2014/04/liebsterblogaward.png

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!

Thursday, December 26, 2013

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.

Thursday, December 12, 2013

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.

Thursday, November 14, 2013

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.

Friday, August 16, 2013

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.

Saturday, March 9, 2013

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.

Sunday, December 16, 2012

I Won't Go Back: The Sandy Hook Shootings and Asperger's Syndrome

Aurora, Colorado. Clackamas, Oregon. Newtown, Connecticut.

These three places have one thing in common: Each has been the site of a recent mass shooting. While the loss of life at each has been horrific, the massacre in Newtown has struck an especially raw chord, as it took place at Sandy Hook Elementary School. The gunman shot his way into the school, and several teachers, the school principal and psychologist, and--sadly--twenty young children, were left dead in his wake.

Almost immediately, people were scrambling for answers: Who was the shooter? How did he manage to bring several weapons into a school? Why would he commit such a heinous, despicable act? The media has been very quick to provide answers to these questions--though not necessarily the right or responsible ones. 

Within a day of the shooting, at least two major news outlets were speculating that the shooter--who turned the gun on himself--had some form of Asperger's Syndrome. So-called "experts" were trotted out onto programs such as Piers Morgan Tonight, and described Asperger's in the ill-informed fashion so typical of someone who does not know what they are talking about. 

Even with only this, the fear and paranoia have begun to build, and with them, a creeping terror in the pit of my stomach for what this will all ultimately mean for people living on the autism spectrum.

A few nights ago,  Linda Walder Fiddle, of the Daniel Jordan Fiddle Foundation, introduced me at the Hope Swings autism gala, where she was the invited honoree. During her acceptance speech, she referred to me as "one of the premier autism advocates in the country." 

Yet I am sitting here now, trying to make sense of the Connecticut shootings and the media's irresponsibility in characterizing the shooter as having Asperger's Syndrome, and despite Linda's glowing accolades...I am at a loss. As I wade through the jumble of disbelief, sadness, heartache, and a steadily growing sense of fear, there is only one thing that I know for certain:

I won't go back.

I won't go back to believing that I am the only person going through what I am going through.

I won't go back to being that voiceless, frightened girl who thought that she was nothing and would never be anything.

I won't go back to when words like autism and Asperger's Syndrome had no recognition, no meaning...no place in the world. 

Autism and Asperger's Syndrome do have meanings now...and that is what worries me. All too easily, a story on the news translates into frightened parents, children who believe their AS peers are killers, and a stigma that can never be fully shaken. All too easily, children and adults on the spectrum--traditionally far more likely to be victims of violence than perpetrators--can become victims anew, all as the result of a crime committed by a person who in no way represents the overwhelming majority of people living on the autism spectrum.

If I truly am that person that Linda described me as, then my role in this becomes clear: 


I will fight. 

 
I will stand up and speak out for as long as it takes to ensure that no person on the spectrum is unjustly marginalized, disenfranchised, railroaded, or otherwise bullied by a society that wants to demonize us. 

I have to, because there is no other option. There's no reversing course, no shuttering us away in the dank institutions of the past....no undoing the work that so many of us have done.

I won't go back. 

...Will you?