Happy Thanksgiving

I want to wish all of you a happy Thanksgiving. 

I don't know what the holiday is like at your house, but we try to keep it pretty low-key here. As we tend to be somewhat iconoclastic (and what autism family isn't, though Klailklop and I were that way to begin with), we are planning to celebrate the day with a nice hike, weather permitting, followed by a vegetarian dinner. We live far away from all of our relatives, but we always have some dear friends join us to hang out during the day and to have dinner with us. I enjoy cooking, so it is sometimes a task for me not to go overboard. 

We do discuss the things we are thankful for. 

I am eternally thankful to have the privilege of being Singularity's mom. I feel kind of like the Grinch who stole Christmas, at the end of the story; my heart has grown at least three sizes from knowing Singularity. 

I am also thankful for Klailklop. It has been harder in some ways for him to be an autism parent. He has amazed me with his ability to keep trying, and for that I honor him. 

This year I am also keeping my father in my thoughts. He had a serious surgical procedure last week and will be recuperating for several months. The surgery was a success, and I am thankful for that. And for my mom, who is keeping it all together. 

I am also thankful for the non-verbal autistic people who have shared their experiences with the world. Carly Fleischman. Ido Kedar. Naoki Higashida. Thank you for blasting away so many misconceptions about autism. 

Sometimes Singularity is thankful for a thing, such as his Buckyballs. I can't wait to hear what he is thankful for this year. 

Please comment / An index to autism memoirs

Comments feature

When I began this blog, I didn't know what the experience of it would be like. I didn't know how vulnerable I would feel about the things that I would share, so I didn't turn comments on. Well, it turns out that I love writing the blog! I have had a lot of supportive feedback about my posts, but I still feel as if I am writing into a void. So, I have enabled the commenting feature. I would love to hear from you, whether it is in response to something I have written or if there is something you would like me to write about. 

A question

One of my identities outside of being an autism mom is that of book indexer. I read nonfiction books that are about to be published and create the indexes that appear at the back of the book. It often frustrates me that memoirs do not typically include indexes. You may have noticed that I am a little obsessed with the first-person narratives of non-verbal autistic people such as The Reason I Jump, Ido in Autismland, and Carly's Voice right now. 

If I wrote a combined index for these books, would you be interested in using it? Please let me know in the comments. 

Autistic person vs. person with autism

It is probably not surprising that I do quite a bit of reading about autism. I have always been most interested in reading first-person accounts. I started with books by John Elder Robison, Valerie Paradiz, Donna Williams, Temple Grandin, etc.

More recently I have been reading the blogs of autistic people. My current favorite is Autistic Hoya, written by Lydia Brown. Her intellectual rigor really appeals to me.

Please note that I am now using the term "autistic people". I used to refer to Singularity as a "kid with autism" or as "having autism", but I have been rethinking this in light of what I've been reading from the autism self-advocacy community.

Person-first language was advocated for by the disability rights community, beginning in the late 1980s. It is entirely understandable that a person with a visible physical handicap would want to be seen as a person.

However, I now understand that this person-first language doesn't make sense in describing ways of being such as being autistic, Deaf, gay, etc. The term "person with autism" makes it sound as if autism is something that you have to carry around with you, as if in a backpack. Something that is a burden. Something that a you might want to cast off.

But autism is integral to a person's personality. It is pervasive. And autistic self-advocates are owning their autistic-ness. They don't want to cast it off. It is part of their identity.

I really can't explain this more powerfully than Lydia Brown does, so I do hope that you will check out her blog post "The Significance of Semantics: Person-First Language: Why It Matters".

I hope that I will do a good job of teaching Singularity to own his autistic identity with pride. And remember: if you've met one autistic person, you've met one autistic person.

Romantic relationships with autistic people / Autism in The Tooth Tattoo

Apart from being an autism mom, one of my identities is being a musician, a violist specifically. Two of my favorite things are playing chamber music (pieces written for a small group of conductorless players, such as a string quartet, in which each player has their own part) and in opera orchestras. I like the same thing about chamber music and opera: they both demand an extreme kind of concentration.

In both cases, you never know what is going to happen next. In opera, you have to be prepared for the tenor to forget an entire verse of his aria or for the conductor to start the next selection too fast or slowly. In chamber music, you need to listen closely to the person who hands the melody off to you, so that you can play it with the same style, at the right volume, in whatever tempo they were playing it. Somebody might get lost, but you just have to keep going, even though you never heard the cue you were waiting for.

By the way, I happen to live in a household with two family members with absolute or "perfect" pitch. Both Singularity and Klailklop have it. Sadly, I do not have a well-developed sense of absolute pitch, but I do manage to sing things in the right key about half of the time.

Anyway, when I read a review of The Tooth Tattoo, by Peter Lovesey, in the newsletter of my local chamber music society, I immediately put it on hold at my local library. This book is a mystery that revolves around a famous string quartet (the group of players, not a piece of music). Much of the story is told by the violist! This was enough to make me want to read it. And not far into the book, I learned that a member (the second violinist) of the quartet happens to be...wait for it...autistic!

Now, there has been increasing visibility of people with autism in popular culture in recent years. Some of the most notable examples I can think of off the top of my head include the character of Max on NBC's drama Parenthood, Claire Danes' portrayal of Temple Grandin in HBO's eponymous biopic, and the titular character in the movie Adam. It is interesting that the examples I am thinking of are all very high-functioning people, unlike the more stereotypically autistic character in the 1988 movie Rainman. Click here for a more complete list. No doubt this is a function of the increased incidence of autism over the past twenty-five years and, more importantly, increased autism awareness.

There has been a lot of discussion in the autism self-advocacy community and the autism parent community about these TV shows and movies. I haven’t seen anything about autism and The Tooth Tattoo, so I am going to share my reaction it.

Here is the first time we meet Anthony, the second violinist:

Mel was looking at the one musician he hadn’t already met, a guy more his own age [late twenties], with brown hair to his shoulders and dressed in a black shirt and red corduroy trousers, but unwilling, it seemed, to make eye contact. 
Ok, fair enough. Making eye contact is often too intense an experience for people with autism.

[…]

“Good to meet you,” Mel said to Anthony and could have saved his breath. The second violin showed no intention of shaking hands or offerin any kind of greeting.

[…]

And as Anthony took up the fugal theme on a single up-bow it was apparent how seamlessly the two blended. This was playing of rare quality. The second violin might be a social misfit, but he was a fine musician.
Yes, when there is underdevelopment in one area, we need to look for overdevelopment elsewhere.

Later, Mel, the new violist  in the group, is discussing the group dynamics of a string quartet (entire books have been written about this) with Ivan, the first violist:

…Mel said to Ivan, “this is more dynamic than anything I’ve experienced musically before, the way we all contribute ideas. “

“It’s how [this quartet has] always worked.”

“So creative.”

“Nothing is static in ensemble work. We learn from each other constantly.”

“I’m learning in spades.”

“It isn’t one-way. We’re responding to you.”

Mel blinked. “Really?”

“I don’t say things I don’t mean. So you feel you are benefitting from the experience?”

“Enormously, even though I still hardly know you.”

“Me personally?”

“The group. Anthony puzzles me the most. A sort of Jekyll and Hyde.” He stopped embarrassed at what he’d said. “No, that’s out of order. Do you know what I mean?”

“Bipolar?”

“I wouldn’t want to give it a label.”

“Good -- because we don’t think he’s bipolar. That’s about highs and lows, isn’t it? Manic-depressive stuff. He’s not particularly depressed.”

“There’s a personality change when we start rehearsing.”

“The music is paramount to Anthony. It dwarfs everything else. The rest of his life bores him. He can’t be bothered with it. Playing in the quartet is his only reality.”

OK, music is Anthony’s special interest.

“Isn’t that dangerous?”

“There are times when we have to remind him over the most mundane things like getting his hair cut or renewing his passport. He needs someone in his life to chivvy him along. But he’s not capable of entering into a relationship, so I don’t think he’ll find anyone.”

This really makes me angry. It is a stereotype that autistic people are not able to form relationships with other people. I believe that they desire it, but it is may be too intense for them to tolerate.

Also, I think that we neurotypicals need to develop a more flexible concept of what a relationship is. For an autistic person, it could look quite different, but still fulfill their needs.

And one other thing: I know from personal experience that an autistic person is capable of connecting to others. Singularity and I have a very strong bond.

“Not capable? He must have emotional needs.”

“Outside music?” Ivan shook his head. “I’m not aware of any. The emotion is all channelled into his playing. If his body tells him he requires food, he’ll eat. He doesn’t read or go to the cinema. When he wants sex, he’ll pay for it. All those things are functional, unconnected with intellectual pleasure which comes to him only when he picks up his violin.”

“When he wants sex, he’ll pay for it.” 

WTF??????????????????????????????????????

Having said he wasn’t giving a label to Anthony’s behaviour, Mel passed no comment. Privately he thought this sounded like some form of autism.”

Well I guess autism advocates are having some effect, as laypeople have some awareness of what autism is.

Later there is a discussion between the detective investigating the murder mystery and one of the quartet members, on the topic of Anthony’s reaction to talking to the detective:

“[The murdered ex-violist] could rely on [Anthony] to tell the truth. There’s no sophistry with Anthony. He gives it to you straight if he gives you anything at all. That’s a symptom of his condition.”

OK, it seems as if the author read something about “theory of mind” or about how autistic people, with less awareness of social rules, are less, um, diplomatic than others. I think that this is a case of listening to what “experts” have said about autism, rather than what autistic people have to say for themselves. For example, Ido Kevar is very clear in Ido in Autismland that he does possess theory of mind; it is just that his inability to control his body gets in the way of being able to display it.

Well, this post is getting very long, so I am just going to leave you with a link to a touching video made by the girlfriend of an autistic person. Listen to her, and you will hear someone who has opened herself up to trying to understand a different way of being. I feel heartened that there are people like her out there, as I continue to cherish the neurotypical hope that my beloved Singularity will find someone who will be able to fully appreciate him.

What can NTs know about autistic experience? / Following Singularity's interests

I know that many people with autism really love water. Looking at water. Touching water. Playing with water. Being in water. 

But why? Is it the way waves form in it? The way light is refracted? The way things sound underwater? The pressure of water on the skin? The feeling of floating? 

I can't really know, and anyway the answer is probably different for each person. But this week I had an experience of seeing the world a different way that might shed light, in a small way, on some of these questions.

As I was pouring tea from the pot into my favorite Joan Miro mug, I noticed that air bubbles formed on the surface. They completely covered the the surface, with the smallest bubbles in the middle and the largest on the edges. Then the center bubble popped, and the bubbles receded from the center out to the edges. 

It was beautiful.

There was also an audible aspect to the experience. When I was pouring the tea, of course there was the sound of the stream hitting the surface, like a waterfall. But there was also the sound of the bursting bubbles. It was very faint at first, crescendoing as the bursting bubbles became larger and more numerous. 

The experience was transcendent, going beyond the mundane experience of pouring a cup of tea. 

Is this the kind of paying attention that is more accessible to people with autism than it is to us neurotypicals?

The pattern of the bubbles didn't turn out very well in this picture. It might be because the tea in my original "'vision" was at room temperature, and the tea in the re-enactment was hot. Or maybe I just poured it off-center to the mug. Now I'm going to have to experiment -- cursed analytical mind!

This experience also got my visual memory going. It reminded me of some kind of fractal pattern, such as occurs in Romanesco broccoli:

We are still very interested in geometry at our house, so it also reminds me of this: 

This is called the Apollonian Net. I found a really interesting blog post on it at ErkDemon (Erik Baird) - The Other Side of Science. 

Singularity has a deep understanding of solid geometry, which I think was bolstered by playing working with Buckyballs. Two years ago, my mother gave Klailklop a set, which Klailklop enjoyed. And then Singularity saw them. He loved them so much that we had to get a second set, so that the two of them could play work with them together. 

I should hasten to mention that we are well aware that these strong rare-earth magnets can be hazardous. If more than one is swallowed, they can cause ruptures in internal organs. The Consumer Product Safety Commission was able to get the company to stop manufacturing them. They were never recommended for use by children, but we do let Singularity use them, because he uses them in an adult way. 

He had already learned about cubes and tetrahedra at school, but he quickly learned how to build docecahedra and icosahedra out of the Buckyballs. And then he discovered that Wikipedia is an amazing resource for learning about solid geometry. Fast forward, and now he is enjoying learning about things like the small snub icosicosidodecahedron (just the name of this polyhedron has become an inside joke between Singularity and Klailklop), geometric duals, etc. 

I do apologize for once again trying the patience of the non-mathematically inclined reader. But this is Singularity's passion. As an autism mom, I so want to connect with Singularity and understand what he is going on about that I do my best to follow along. Fortunately, I have been able to so far. I am sure that he is going to surpass my ability soon. 

I will leave you with an image of a cheat sheet I had to create for my own understanding. Singularity just knows all of these things and explained it to me verbally as I was writing. I should note that he corrected my spelling in approximately 5 places. His is a beautiful mind.

Emotional regulation, flexibility, and the attribution of intent

On Monday of this week we had a mini-crisis. 

Singularity's class had been in another classroom for music instruction. Their backpacks were piled up outside the room. At the end of the day, when the kids left the room, Singularity's backpack was no longer there. It wasn't in the office. It wasn't in his classroom. It wasn't in the lost and found. I looked for it. Very hard. It just wasn't there. 

My neurotypical mind rapidly concluded that someone must have taken the wrong backpack by mistake and that it would most likely turn up the next day. This is not how Singularity's mind works. He concluded that someone had stolen the backpack intentionally. In addition, he felt that it had been done to him on purpose. He felt violated and furious. 

And so a 45-minute tantrum ensued. Sigh. Singularity's tantrums are rare, thank goodness. During the tantrum, he insisted -- at the top of his lungs -- that he was going to kill the person who had taken his backpack. Not only was he going to kill the person, but he was going to kill the entire family of the person who had taken it. And all of their pets. And all of their plants. And he was going to smash their house down and then burn it. 

I should hasten to say that Singularity is not actually violent. He was just expressing his anger the best way he could imagine. 

He is more of a Steven King than a Ted Kaczynski. 

So that evening I pulled out the "back-up backpack" and his old lunchbox and talked with him about how he would be using them the next day; how I fully expected that his normal backpack and lunchbox to reappear in the morning; and how I did not think that someone had stolen it on purpose. He became a little teary during this conversation, but he didn't go ballistic again. 

On Tuesday morning, he also became a bit teary when it was time to leave for school. He also ran back to the kitchen to  fetch a box of matches, but he was easily persuaded that matches aren't allowed at school. He was flexible about using the other backpack and lunch box, and he managed to contain his feelings and get to school on time. 

And when we got there, the backpack had miraculously reappeared! 

He was thrilled to see it, but he immediately concluded that it was his own fault that it had become misplaced. This raised a bit of a red flag for me, as I don't want him to blame himself for something that he didn't do. Something to keep an eye on. I hope that this doesn't become a trend. 

Through the entire episode, I could see him struggling to regulate his emotions, and he did a really good job. A mature job. This felt new.

He is so much more resilient than he used to be. Over a year ago, I had accidentally left his bicycle helmet on the playground. When I went back to look for it, it was no longer there, and it never reappeared. At the time, Singularity had a tantrum about how someone had stolen it from him and how he wanted to kill the thief, and he refused to ride on his scooter for several months before he would accept a new helmet and ride again. He got stuck on that idea.

I wish I could say why he handled this so much better this time around. Is it because of something we did in ABA? Is his ability to take the perspective of others developing? Is he just maturing? I am just glad to see this progress. 

So far on this blog I have written a lot about things that are going well for us right now. I assure you that it has not always been so. I am working on a series of posts about my family's "annus horribilis". It is taking me a while to work through it, as it was a very emotional time for all of us. I also want to be very respectful of the privacy of my family. I hope that you will keep reading. 

And now I will leave you with another Singularity-ism:

I chose this image, because it is an amusing use of a flexible object, in keeping with the flexibility theme of this post.