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 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.

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:

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!