Mobility and Visibility

Scene in my synagogue today - a little girl is moving at full speed around the shul when she sees someone special to her. She stops, says the woman's name. The adult turns and bumps hands with her, with a huge smile. The little girl careens off to find her daddy, all excited by this encounter.

Rockland Autism Symposium

Last Thursday, I attended the Rockland County Autism Symposium, both as a self-advocating autistic person AND as a representative of Yad HaChazakah, a non-profit organization dedicating to empowering the disabled members of the Orthodox Jewish community. I have the honor of serving as their secretary. Mostly, though, it was for me. I want to stress that. I enjoyed myself and I felt I learned a great deal, so I'm very grateful I had the chance to attend.

Concert Impact

Thursday night, I attended the Queen + Adam Lambert concert in Madison Square Garden. I wrote a review from a fan perspective here, on my fan blog. I enjoyed it very much, but there were issues, both expected and unexpected, that caused a few problems.

Stim toys

"Stimming" is the term used for behaviors people with autism and others, inclu,ding neurotypical people, use for self-regulating, calming and focusing. It has almost endless variations, from the flapping and rocking associated with autism to subtle things like chewing gum or clicking pens.

We do it to relieve stress, to replace destructive behaviors, to enable us to pay attention and because it just feels good.

It's also something that, in the past, parents and teachers have tried to suppress in their children because it can look very odd in public. Since being in public is often stressful, this can be a no-win situation.

"I am having an autistic meltdown."

I had to say those words to a complete stranger on Saturday night, at a point where words were - well, they're never HARD for me because I'm verbal enough to be considered "high functioning", but not where my brain was. It was necessary. It was extremely difficult. And it didn't do any good at all because the person I was addressing didn't know what it meant.

DoubleWhammy

I lost my job a few months ago. In an effort to keep myself occupied and also maybe improve my resume, I started volunteering with a friend's organization,Yad HaChazakah, The Strong Hand. They want to empower Orthodox Jews with mental and physical disabilities so they can lead full Jewish lives.

Last week, she let me screen a short film, "A Life With Aspergers", and I was saw it, I was so struck by the imagery, especially the diving helmet on the little boy, that I had to talk about it afterwards.

Since my friend was going to show this and another film that coming Sunday (today!), she asked me to share this with the very small (fifteen at most) audience. I agreed. I've led discussions before, so I knew I could do this.

She asked me to come in again on Thursday to screen the other film, a Swedish film called "It's All About Friends." She also had someone else join us, a woman who headed an organization that I didn't quite get. I knew there was something off because one of the characters clearly had Down Syndrome, and had been identified as mentally handicapped by her father, but this woman thought the character was hard of hearing. And she couldn't see the characters from the inside, only from the pov of the protagonists. This movie, which is Swedish, has several characters who are disabled and played by disabled actors.

I felt intimidated by her and I was worried she'd come to the screening today.

Then this morning, I learned some unpleasant news. I very much want to go to a rock concert (Queen with Adam Lambert!)but the general ticket sales start on Saturday. This hit me hard - I mean it felt like a physical blow. All I could feel was anger and frustration. Rationally - there are several presales, the show is unlikely to sell out so soon PLUS I can afford StubHub AND people offered to buy tickets for me on Saturday - but I wasn't able to process anything rational. In other words, I had a bad meltdown.

This meant yelling at my poor husband, who doesn't like being a target of my frustration AND very much wanted to help but there was nothing he could do. He also doesn't like my Adam Lambert obsession. None of this is unreasonable.

I tried to calm down - knitting, watching a nice sitcom - and I almost managed it, but we had to leave and I pushed it so we left pretty much last minute. We scarfed some fast pizza and got to the place just slightly early.

I thought I was going to arrive at the end of the screening and give my talk. Instead, we arrived (at the time specified) BEFORE the screening. I was to watch the films (again)if I wanted and then do my little talk afterwards. I was nervous, emotionally on edge, at a point where everything irritated me, and worked up to perform and it was delayed. This was not a good thing.

I ended up hiding in my friend's office to play solitaire on my phone, which did help a little. So, as it turned out, was watching the long film again. I knew some of the people in the audience - all friends from my synagogue - and the others were all strangers. Not that woman who intimidated me. So that helped as well. But it was odd, because talking about my neurological condition is very personal, and I wasn't sure which was harder - my friends or the strangers.

I don't know why the film helped, but by the end, I was pretty well relaxed. My friend discussed the long film and then she introduced me to talk about the short one.

I had their attention. They asked interesting questions, they were engaged. They didn't understand why I like rules and am happy I was diagnosed, but they do now. Jon says I was animated and interesting and he was proud of me. My friends hugged me. I had fun. It went as well as I could have dreamed. A very difficult day had a good ending.

Things in my brain

I know it's been awhile, but I realized just today that my therapist is on vacation for a couple of weeks and there are things I want to talk about. This way, I can (yes, you are ALL my therapists now. You're welcome.) talk about them so I won't be obsessing over them until she returns and so I won't forget them.

One thing happened just a couple of weeks ago, while we were having Shabbat lunch at a friend's house. We knew most of the other guests because this family has regulars. I think we currently count. However, there were two who were unfamiliar, a father and teen-age son.

As soon as the young man opened his mouth, I knew he was on the spectrum, and further along than I am, or less socialized, or both. I'm over thirty years older than he is and I'm a woman and these make a difference in how a person on the spectrum presents.

First, he was loud. He wasn't shouting, but it was at an inappropriate volume. This is a tell. It's something that those who know me also have to endure, although I hope I'm not as loud as he is. I don't know.

That's right. I do not know my actual volume, or rather most of the time, I'm not conscious of it. I can make an effort to change it if I'm in a situation when being louder or softer, but not shouting or whispering, is necessary or appropriate, and keep it up so long as I'm in that situation. I can also adjust my volume when someone else tells me I'm inappropriate (usually too loud) but that is very short term.

I am told that most of the time my volume is set on the loud side of normal. I believe them but as the difference is subtle and I can't detect it, I can't do anything about it. My hearing is just fine for a woman my age. I just don't hear the difference between my volume and someone else's.

This young man was set even louder than me. To his credit (I think) his father never criticized him for this, and everyone else took their cue from him. It is very frustrating to be told to talk softer all the time when you can't do it very long if at all, and frustration is one of those emotions that overload quickly.

The second thing I noticed was his formality. He was extremely polite - everyone was sir or ma'am, he said please and thank you. In my mind, he was following the rules of good manners in the way that the other teen-agers present (who had excellent but informal manners)did not need to. THEY had the rules internalized and knew when to be relaxed about them. HE did not, and he chose to be more formal to avoid making mistakes.

Rules are very comforting things to me and others like me. They mean you know what to do in many situations that neurotypicals may understand instinctively. They mean that either you will do the right thing OR if you are wrong, it's not your fault. You followed the rules. One of the best things I ever discovered was Miss Manners Guide to Excrutiatingly Correct Behavior. It gave rules for both formal and informal situations and made interations with other humans easier. It's also one of the reasons I love being Orthodox. There are rules for everything!

I believe he also spoke without a great deal of inflection, which is NOT a problem I have, according to people I've asked. I may be loud but I don't sound otherwise odd. However, I really don't know for sure.

I did discuss comic books with him at one point - like me, he loves them,although he prefers the humorous, not the superheroic.

This leads to another thing. I just finished reading Jim C. Hine's Libromancer,which is an urban fantasy novel which uses books as sources of magic. Which books are - this is definitely a book aimed squarely at the SFF fandom community. I was sad that one of the books he mentioned doesn't actually exist. Recommended.

One of the secondary characters in the novel was described by another, highly empathic, character as "autisitic." This surprised the main character who had worked with this person for years. The empath read autistic people's emotions differently and with more difficulty because they accessed them differently and this occured with the person in question.

This was not presented as a positive or negative for the person in question, just as an obstacle for the empath. The person in question is portrayed as highly intelligent and competent at their job, with a deep love of animals and affection for other humans, as well as a deep love of rules. In other words, it was merely another character trait along with one character's love of science fiction and fantasy and another's need to take of people. They were not less of a person, less of a human. Just different than most, but then most of the characters can also do a form of magic, and that's also different.

I really, really loved this.