Excitement, Impatience and Waiting by @EmmasHopeBook || AutismAid

Excitement, Impatience and Waiting

emmashopebook.com | Nov 26th 2012

The day before Thanksgiving a facilitator, P. came over to work with Emma.  I met P. at the AutCom Conference in October and asked him for some guidance in helping Emma communicate more effectively through typing.  And while Emma is verbal, she can voice basic desires, has even begun to comment on things going on around her, she has not communicated more complex thoughts.  I know Emma is intelligent with a great many ideas and interests.  I want to help her express herself in whatever way proves most advantageous, whether that is verbally, through typing or some other, still unknown, way.   I want to help her be a full participant in this world so that she can have choices and options available to her.

P. has facilitated people for several decades, so I felt confident he would be able to help me learn how I can help Emma better and was excited to have him work directly with her while I watched.  We started with a number of apps, Emma had no trouble pointing, using her index finger to match words with images that she knows.  But in the past when it comes to typing an idea, Em will usually type, “yes” or “no” and then repeat the question, which is what she was taught to do with her most recent literacy program.  I am hoping Emma can be encouraged to move beyond that.

As P. worked with her, slowing her down so she couldn’t simply repeat what had been asked, holding her arm at the elbow, putting up some resistance to her desire to type quickly, reminding her to write what she was thinking, asking if that’s what she meant, I felt tremendous hope.  P. asked Em to bring a book she liked.  She brought him a collection of fairy tales and plopped the large book on the table in front of him.  Em chose to discuss Goldilocks and the three bears.  Most of what was typed were fairly simple ideas about the bears and Goldilocks and the havoc Goldilocks causes (much to Em’s delight.)  But then P. asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times.  How can I describe the feelings that came with reading it?  How can I express the surge of hope I felt?  How can I possibly describe the feeling of euphoria?  This sentence, this idea was beyond what I have come to expect.  It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.  It was a terrific idea, one I have discussed with both children during the summer months when we visit my mother in Colorado where we often see bears.  I have warned the children that if they encounter a bear, especially a mother with her cubs, to not get between them, to keep their distance, to keep their eye on the mother and to make loud noises.

But Emma wasn’t finished.  She then typed, “By the way, this is a very sad story.”  I was astonished.  I had a million questions.  Emma has never spoken this way.  Ever.  ”By the way” is something both Richard and I say, both in jest as well as seriously.   Em has never uttered these words, let alone typed them.  And why does she think it’s a “sad story”?  What strikes her as sad?  Which part or does she think the whole thing is sad?  It is sad, I thought and then I Immediately went to,  I have to become trained in facilitated communication.  I have to find a way to communicate like this with Emma.  As I am not able to become trained in facilitated communication in the next 24 hours, I made an appointment to Skype with P. in another week, which feels like an eternity, and will try to do whatever I can to continue to learn so that I am better able to help my daughter become an independent communicator.

Between now and that Skype call, I am doing my best to manage my impatience, my excitement, my hopes and dreams and the reality that my daughter has a great deal to say and boy do I want to hear it all!

Em & P.

Original Page: http://emmashopebook.com/2012/11/26/excitement-impatience-and-waiting/

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True friends by @Aspienaut || AutismAid

True friends

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Original Page: http://aspienaut.tumblr.com/post/29068447873/true-friends

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Bloggers, Writers, Autism and a Huge Amount of Hope by @EmmasHopeBook || AutismAid

Bloggers, Writers, Autism and a Huge Amount of Hope

emmashopebook.com | Nov 13th 2012

When Emma was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified) in 2004, I was lulled into believing it was a temporary condition, nothing that a few years of therapy wouldn’t resolve.  I saw it as a kind of throw away diagnosis, not exactly full-blown autism, more like a mild version of something that resembled Autism, but wasn’t.  Kind of like a bad cold, not exactly a bacterial infection requiring antibiotics, but troublesome never-the-less and we’d have to ride it out.  Besides, I reasoned, just because many of Em’s behavior looked autistic-like, seemed autistic-ish, she probably wasn’t autistic because, well, no one really understood what autism was and so how could she be labeled something that no one understood or really knew what it even meant?  Or so my thinking went.  During this initial period I kept my eye out for any Autistic adults I could find, just in case, you know, she really was autistic, I wanted to know what we might expect.  I found none and concluded that since I couldn’t find any, there must not actually BE any to find.

Still, just on the off-chance I was somehow wrong, I kept looking.  Every now and again I’d find someone, read everything they wrote or said and conclude that my daughter wasn’t really like them or wasn’t like them enough to give me much hope that they were good examples of what she might be like later in life.   (In retrospect, since Em wants to be a singer, I should have been looking for performers who are autistic, but even so, would, most likely, have come to the same conclusion.) By the way, I have never met a neurotypical adult who seemed like an adult version of my neurotypical son, but this thought didn’t occur to me for a great many years.  Despite all of this, my search continued.

In 2005 Em’s PDD-NOS diagnosis officially became “autism”.  As time went on and my thinking continued to change, Emma remained Emma with all her “Autistic-like behaviors” very much in place and I continued to grapple with what this meant.  I wasn’t one of those parents who understood that regardless of her neurology, she was who she was and it was all good.  I bought into the autism is like cancer idea, and therapy was chemo.  (This idea was very popular back in 2004, though I hope it has waned.)  It took me awhile to question this thinking and it took me even longer to see how these beliefs made any “therapeutic” program somewhat reasonable, because, after all, nobody signs up to have chemo and talks about what an enjoyable experience it is.  The idea that Autism is NOT cancer, that this thinking in and of itself leads us down a very dark and dangerous path was something I didn’t come to until much later.

Now fast forward to this morning.  This morning I read a terrific post, The Princess, Her Socks and Her Late Pass on a wonderful blog I’ve begun reading regularly by Aspie Writer called, Twirling Naked in the Street and No-one Noticed, (love that title) which she describes as “A blogged book: Growing up with undiagnosed autism”.  Reading her post about how she hated wearing socks, (so does Emma) how the fabric bunched and the seam on her toes hurt and how the socks had tiny rocks in them that no one else could see or find, kept reminding me of Em.  Aspie Writer recounts how she was always late to class and keeps saying over and over, “I have to see Mr. Hiler for my late pass.”  It is a wonderfully written description about a baffling behavior.  She does such a terrific job describing her actions and words that they made total sense to me.  Not only was I able to identify with her thinking, it gave me a little glimpse into some of Em’s seemingly baffling actions or repeated sentences.

And I was reminded (again) of why reading blogs by Autistic people is of such vital importance to me.  It’s not because I think to myself, oh Emma is going to become this person when she’s an adult.  I don’t assume that because Aspie Writer is married, a mom of 3 and a wonderful writer this will be Emma’s future.  I haven’t met a single adult, autistic or otherwise who seems to be just like either of my children.  How could I?  There wasn’t an adult version of me when I was a child and I’m certainly not an adult version of anyone else’s child.  It’s kind of a ridiculous idea when you stop to think about it.  And yet, that’s what I wanted for all those years when I was searching.  I wanted to find someone who seemed just like Emma was.  I wanted this desperately because I was so fearful of her future.  Yet, all those autistic adults who are not exactly like my daughter  are the very reason I am no longer fearful and why I have so much hope.

Blogs, both the writing of this one and finding those written by Autistics have changed my life.  Blogs are a slice of life, immediate and interactive.  I can read a post and “like” it, comment on it, even though I may or may not get a response from the writer.  I can then tweet the post out, share it on Facebook and engage in a dialogue with the writer if they care to respond.  The immediacy of blogs is compelling, engaging and makes the reader feel more apart of than when reading a book.  Books are wonderful too, but they’re different.  They do not have the interactive element to them that makes blogging so wonderful.  Blogging is very much about “us”.  We, whether as a reader or writer, have the opportunity to become part of the process, a part of “them”.  Another aspect of blogging is – anyone can blog.  You don’t need an agent, you don’t need to even write “well” (though there are many wonderful writers who also blog), you just need to want to write.  So you have a great many people who may never have bothered to look for an agent or publisher, who are writing and because it’s a casual writing form, you also find some amazingly beautiful blogs written with honesty, unedited, raw and complex.

To all the Autistic people who are sharing your stories, your words, your lives, whether by commenting or by having a blog of your own or both, here’s a very loud and heartfelt thank you!  You are making a difference.  You have changed my life.  How does “thank you” even cover the enormity of that?  It doesn’t.

Emma – 2003

Original Page: http://emmashopebook.com/2012/11/13/bloggers-writers-autism-and-a-huge-amount-of-hope/

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Acting The Part by @AspieWriter || AutismAid

Acting The Part

aspiewriter.wordpress.com | Nov 26th 2012

By the time I was nearing the end of elementary school, I had learned how to live by a script. I learned by watching television, by looking at magazines, and by reading books. In the fourth grade, I learned about my having a period by reading “Are you there God, It’s me Margaret”, by Judy Blume. I read, and re-read that book many times during the fourth and fifth grades.  Margaret became one of my best friends.

“I love my books; all my friends live in there!” ~Me

My friends often lived inside my books, and the television set. I imagined interactions with the characters, and tried to think of what they would say in different situations.  Every interaction was played out in my head before it happened—if I could foresee an event.

For instance if I were to contemplate asking a friend to come over to our house to play, I would have the conversation over and over again in my head before approaching the girl. Many times my own words sounded stupid when I played them and I decided not to offer an invite.

After an interaction, I’d replay the scene hundreds of times judging if I sounded “stupid”. I imagined what could have happened if I said this or that, often berating myself for saying the wrong thing.  My voice, my words were usually wrong so I tried to become other people, to take on other personas.

I tried to be the beautiful model in the picture hanging on the wall of the hair salon. If I could be her then all the girls would want to be my friend. This particular model had extremely short hair, shaved in the back with longer waves on top. The kind of hair you can only get from having professional stylists work on it for hours before a photo shoot, which is something I failed to understand at the time.

I wanted to be her, I wanted that haircut, and so my mother allowed the hairdresser to cut my hair short—very short.

I didn’t look like the model, in fact, I looked like a boy! I of course was unaware of this fact until I went to school the next day.

In the fourth grade a boy’s haircut does not a popular girl make, so I had my ears pierced. For sure now with pretty studded earrings I could not look like a boy, but at school my pretty ears did nothing to detract from my head.

Pretending to be someone else became an obsession. I watched my grandmother’s stories (soap operas) and picked out characters to emulate—definitely not the best role models. When I found out that they were just actors and actresses playing a part, with a script, I knew I needed to be an actress.  I could do a script, and I was already used to dancing on stage so this would be a cinch.

Scripts are just like dance routines, they were choreographed for you and as long as you follow the script you are doing it right.

Anything I want to do, I want to do perfectly. People often tell me that practice makes perfect, but that is not true.

“Perfect practices makes perfect.”

If you routinely practice something the wrong way, you will always do it that way. The only way to achieve perfection is to practice perfectly. I afforded myself no room for error—ever.

I knew nothing about acting so the logical thing to do was to go to acting school.  Vanessa and I convinced our mother’s to sign us up for an acting school in Manhattan.

There was an audition to be accepted. We created our own Toys R Us commercial to include acting, dancing, and singing—it was mostly dancing and singing. We practiced until we had every step and every word down perfectly.

I remember riding the train to the city, excited that I was going to be an actress. The possibility of this not happening, never crossed my mind.

The audition went well and we were accepted. Vanessa and I spent many hours learning how to act, and for the most part it was an exciting and fun experience. The problem happened when one day we were given no scripts—improvisation.

Our assignment was to perform a simple silent skit, no words, and no props of any kind. I felt the ball bouncing around in my stomach, the tears welling up in my eyes. My insides felt like they were shaking; panic was setting in.

I could not do it—I wound up acting out the task of making macaroni and cheese in my kitchen.  It was the disaster that ending my acting school career.

Although I continued to try to adopt different personas looking for a person that I could be, I was not very good at the task. I was able to adopt a precious few, but had tremendous difficulty switching between them, rearing from the carefully constructed script. Not all personas work in every situation.

Original Page: http://aspiewriter.wordpress.com/2012/11/26/acting-the-part/

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(Un)Disclosing Autism in the Workplace by @AspieKid || AutismAid

(Un)Disclosing Autism in the Workplace

by AspieKid, aspiekid.net
October 21st 2012
I was bullied a lot during several periods of my childhood. I had no idea why. I never did anything to any of those people. None of them had anything to prove to me. Many of them didn’t even know me. And I used to wonder and worry about it so much. It was like they were intentionally trying to ruin my childhood. Childhood is such an important time in a person’s life, and mine was mostly destroyed by people who had less interest in living their own lives than ruining mine. I often wonder how I would have turned out if I had been allowed to have a happy and peaceful childhood. I’ll never know.

And it wasn’t just the bullies. Everyone in my life seemed to be in on the conspiracy. My parents forced me to go to school, under the pretext that I was getting an education there. But I never felt like I learned much in such an environment. My teachers thought I was weird and looked the other way when kids picked on me, even when they became physically violent with me. Nobody cared. I was on my own. And if I ever fought back, then I was the one accused of being the violent person. I had no one I could turn to and nobody, not even my parents, seemed to care or even believe me. It caused a lot of confusion and mental anguish.

As an adult, I often think back to those times, trying to somehow understand it all. Why did it happen? What did those kids get out of doing all that stuff to me? Are they in better positions in life because they bullied me when we were all kids? I still don’t get it. But I understand society better now than I did when I was a kid and I think it is partly because of societal competition. People pick on the most vulnerable, so they can legitimize their position in the social hierarchy. I never understood why we need a social hierarchy at all. Societal competition is a product of the neurotypical world. I never wanted anything to do with it.

Workplaces are just like schools. Everybody competes to make it to the top. I never watch TV, but my brother tells me about a show called Survivor. Have you heard of it? I know nothing about it. But it sounds exactly the way most schools and workplaces seem to me. I don’t feel like autistics are a problem in society at all. I feel like it is the cutthroat dog-eat-dog neurotypical part of society that is the real problem. As a matter of fact, I honestly believe that neurotypical behavior will some day drive the human species to extinction. Not to generalize too much, because I have had some great neurotypical friends. But unfortunately the nice neurotypicals do not represent the majority, at least not in the United States where I live. The workplace setting seems no better than the schools where people were free to bully me with impunity. Most people delude themselves into thinking they have matured and grown up, but most of them are no more mature than they were when they were 8. Who are they trying to fool?

I found a way to make it through all of that somehow. I figured out how to find my own little corner in most workplaces where I can be productive and earn a little income. I see all of the competition in the workplaces and I am careful to stay out of it. I don’t want to revisit the events of my childhood, especially not now that it is my career. Decades after all of that happened to me, I still live with the confusion from it. I still know that there are people out there who committed crimes against me who will never be brought to justice. I know what it is like to be a Jew growing up in a society of Nazis. The people who say that competition is somehow good for society are, quite frankly, insane. Societies collapse because of competition. Societies thrive when there is cooperation. As long as we insist on having this highly competitive society, then I will insist that I be left out of it.

A few months ago, only a couple of miles from where I live, a guy walked into a movie theater and started shooting people. He hasn’t been cooperating with the investigators and has refused to discuss his motive. But we do know that he was in a PhD program at one of the most competitive universities in the United States, had failed an important exam and dropped out of the program. Is this what competition does to people? When our society forces people to prove they are better than others and puts their career, their means of survival on the line if they fail, isn’t society partly to blame for these events? And one irresponsible and unprofessional journalist, whose disgraced name is not worth mentioning here, had the nerve to suggest that the shooter must have been autistic. Even after such a tragedy, a neurotypical journalist had the nerve to exploit the shooting in order to wage more war against autistics. Hatred prevails. The war never ends.

I don’t want to be a part of that war anymore. I don’t want to be one of the people on Survivor. Anything I say in a workplace can and will be used against me. So I exercise my right to remain silent. After a statement is made, there is no way to take it back. The cat is out of the bag at that point. Rumors spread. People gain each other’s trust only to stab each other in the back. I’ve seen it happen many times. People in my industry talk to each other. They pass information from recruiter to recruiter. How could I ever deal with the fallout from telling coworkers or a boss that I am on the autism spectrum? I would have no way to control it. And everyone is looking for a way to climb on top of each other so they can get ahead. Some of them will destroy your life just to prove they can do it. I don’t need any more of that. I don’t want to give people ammunition they can use against me. I would rather be left out of the societal war. So I remain a closet autistic in the workplace.

Autism acceptance is up to neurotypicals. It is not something that autistics should have to beg for. Neurotypical behavior and attitudes have to change. Not the other way around.

Original Page: http://www.aspiekid.net/2012/10/discosing-autism-in-the-workplace/

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