An Autism Mom's Thoughts on Theory of Mind

Wow, it has been over a month since I last posted. I didn't intend to take such a long break. The next couple of months will be pretty busy, but I am going to try to continue writing here. 

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Having a "theory of mind" is being able to understand that another person has a mind of their own and to imagine what another person is likely to be thinking and feeling. Simon Baron-Cohen, a British psychologist, popularized the idea that autistic children lack a theory of mind, to explain why they have such difficulty in perspective taking or appear to lack empathy. The traditional test of theory of mind is the "Sally-Anne test". 

Another possible indication of autism in young children is the failure to point at things to create joint attention. Recognizing joint attention, of course, relies the ability to understand what someone is paying attention to. In Singularity's case, the lack of pointing was one of the early signs that Klailklop recognized. 

The argument for theory of mind seems compelling, and yet we hear from autistic people themselves that at least some of them do have theory of mind. Here is Ido Kedar, in an October 31, 2012 post on his blog, Ido in Autismland:

My name is Ido.  I have autism and I can’t talk. But I can think. I have ideas and feelings and even a theory of mind. Why I have to say this is obvious. Many theories I have encountered teach that I have no ideas, feelings, or theory of mind. Until I could communicate I couldn’t correct people, but now I can. 

In talking with Singularity, I have traditionally tried to explain to him how I am feeling and to link it to the way my face looks when I feel that way, in case he wasn't able to tell. 

In the last few months Singularity has begun saying things that make it clear that he really does have a theory of mind. 

Earlier this month I attended a day-long workshop. At the end of the day Klailklop and Singularity came to pick me up, rather than my carpooling home, so that . . .

. . . we could send every minute possible together after our long separation (my perspective)

. . . they could have an excuse to get out of the house (Klailklop's perspective)

. . . and I don't really know what Singularity thought about it. 

What I do know is that Klailklop was running behind and showing signs of stress and anxiety, and Singularity said to him, "Don't worry." He could tell that Klailklop was worried and had the empathy to wish to make Klailklop feel better. 

More recently, Singularity has been writing and illustrating a book for me. He has told other people what it is about, but he wants it to be a surprise for me  -- theory of mind point to Singularity. He has also been quizzing me about what the book is about. Of course, I have no idea what it is about, so I have been proposing all sorts of weird ideas, some of which are based on his current range of interests:

• You and your friends turn into penguins in Club Penguin and become ninjas
• Stampylongnose (Singularity's favorite Minecraft YouTube video maker) invites you to play Minecraft on the XBox with him
• Timmy Failure, Super Mario and Harry Potter play Minecraft with you
• The sky turns green and starts raining goldfish crackers
• Stampylongnose starts making videos about Club Penguin

And when I made that last guess, Singularity triumphantly said to me, "I thought you would say that!" And there we have it. Another theory of mind point to Singularity. 

I'm not a developmental psychologist, but my own take on this is that perhaps the development of theory of mind is just part of a human being's developmental trajectory. Autistic people have a developmental disability, by definition; they develop along an idiosyncratic trajectory. The important thing here is that they do develop, just not at the same rate or in the same order as most other humans. We already know that Singularity's developmental trajectory has been unusual. I mean, how many people learn to talk at 14 months, walk at 16 months and read at 18 months? 

(I should hasten to mention that perhaps not all autistic people do develop theory of mind. Some autistic people have written about their befuddlement over the way people operate. For example, Temple Grandin likens it to being an "anthropologist on Mars". Donna Williams writes in her memoirs about how she and some loving friends deconstructed confusing situations. John Elder Robison writes about using his intellect to develop heuristics for figuring out what people might be thinking and feeling.)

So, Singularity is showing us that he has theory of mind and empathy. I find this really exciting, and I can't wait to see what other new developments lie ahead! 

Inclusion and Accommodation

It is not only adults on the autism spectrum that we should be striving to include and accommodate. Inclusion and accommodation are what we wish for, for our kids on the autism spectrum as well, and in all stages of their lives. There are many legally-mandated supports for them as children, but much fewer for adults on the spectrum. It is incumbent upon us to create the world they are going to need when they reach adulthood. As autism parents, this is our personal stake in the matter. 

We need to make all of the organizations to which we belong inclusive, so that they will be that way for our future adult offspring. This is one way of thinking globally and acting locally. 

To put things in personal terms, I want to ensure that Singularity, both as a child and a future adult, will be able to participate in whatever activities he wishes and is capable of doing with or without supports. 

Recently, the Cub Scouts pack that Singularity's den belongs to was discussing the language used in its anti-discrimination statement. Many people are aware of the occasional news reports about the national organization's exclusion of gay leaders and scouts (although the policy regarding gay scouts was rescinded this year) and atheists. Our pack has always had a much more liberal policies about these things, in line with the values of our local community. 

More recently, the pack wanted to issue a flyer to boys in our town's elementary schools, inviting them to join Cub Scouts. Someone had complained to the school district about an earlier flyer, which didn't have any small print disavowing discrimination on the basis of religion or sexual orientation.  The draft of the new flyer contained some convoluted language specifically mentioning religion and sexual orientation, in attempt to pass muster with the school district. 

I argued that atheists and gay boys and men should not be the only protected classes. There are too many imaginable bases for discrimination (race, physical disability, intellectual disability, and developmental disability [including the one near and dear to my heart: autism], just to name a few) for each one to be enumerated in a disclaimer. Somebody will always be left out. I think that it is best to simply make a blanket statement that the pack doesn't discriminate on any basis whatsoever and that all boys and families are welcome, which is what the pack's website says.

We can make these policy statements, and they are important, but even more important is that we actually walk the way of inclusion and accommodation.

Dental Difficulties, the Autism Tax, the Affordable Care Act, and California's Autism Health Insurance Mandate (SB 946)

Arrgh! Yesterday I had a very frustrating morning taking Singularity to the dentist for teeth cleaning. The plan was for him to wear a mask over his nose and receive nitrous oxide, and then for the staff to clean and polish his teeth. At first things seemed to be going well, but then he was no longer able to tolerate the mask. He insisted that it smelled bad, and he wouldn't put it back on. He also wouldn't open his mouth for the dental assistant or the dentist. And as I have no interest in traumatizing my child, that was that. 

The dentist recommended, based on the most recent X-rays [more on this later] showing cavities and Singularity's difficulty in submitting to cleaning in the office, that we proceed to Plan B, which is putting Singularity under general anesthesia and treating everything all at once, rather than trying to use just nitrous oxide. 

Thus, I was handed an estimate of $1,441 (palindrome!) just for the dental part of the procedure. Not counting the anesthesia, which is presumably the more expensive component. 

Singularity has had dental work under anesthesia once before, about two years ago. It was very expensive. Like $3,000, ask-a-lot-of-questions-before-proceeding expensive. 

As with most things, there is a back-story that contributed to my frustration, which has to do with autism, Singularity's regular dentist, our health insurer, and the Affordable Care Act (ACA). Here is an approximate timeline:

2012: Singularity has dental work done under anesthesia in his regular dentist's office. An anesthesiologist from Children's Hospital in Oakland is on-site. It costs more than $3,000. 

May 2014: Singularity goes in for X-rays and cleaning at his regular dentist's office. He can't tolerate the bite wings, but they are able to do a panoramic X-ray. The dentist tells me that Singularity has cavities that should be filled. 

July 2014: Singularity goes to his pediatrician for a well-child checkup. We mention the dental situation to the pediatrician, who mentions that our insurer covers the medical part of dental care under anesthesia and that the Affordable Care Act includes dental care for children. Our pediatrician connects us with a case manager at our insurer. Our case manager refers us to a dentist who is not in our health insurer's network, but to whom they refer cases where dental work under anesthesia is indicated. 

August 2014: We go to see the new dentist. X-rays are emailed to the new dentist, who looks at them and tells me that he doesn't see the supposed cavities, but that we should come back for a tooth cleaning. 

September 23, 2014, 9:30am: We return to the new dentist's office for the cleaning. Singularity isn't able to tolerate the nitrous oxide mask. The dentist pulls me aside and shows me X-rays again, saying that more X-rays were sent from the original dentist's office. These new images show that there is, indeed, tooth decay, so the dentist recommends that the cleaning and filling take place under general anesthesia. The estimate for his part of the work is over $1,400, which is not covered by our health insurer, as he is out of their network. At this point, I am thinking something along these lines: WTF, why can't we get this seamlessly covered through our health insurer?

September 23, 2014, 11:00am: I receive a call from the new dentist's office telling me that there had been a snafu (I would like to add some emphasis to the FU part of that old military acronym) with the X-rays that had been sent from the original dentist's office, and that they have finally agreed on the timeline. The tooth decay that showed on the X-rays was from prior to the 2012 cavity filling. The most recent X-rays do NOT show any new decay, so that the new dentist is now recommending that we simply return to the original dentist, "in a more familiar environment," for a thorough cleaning. 

Which brings me back to my "arrgh" from the beginning of this post. 

The snafu with the X-rays has no direct connection to autism. That could have happened to anyone. However, the only reason we were dealing with the second dentist was that Singularity's sensory profile (that is, an aspect of his autism) puts him outside the realm of (arguably) affordable dentistry. 

So what we really have here is an autism tax. When I say "autism tax" I mean a whole range of extra fees that parents have to pay that are directly related to their child's autism, that parents of "typical" children don't have to pay. If it weren't for Singularity's autism, "the system" would have known how to handle his dental needs. We wouldn't have had to make 4 visits (counting the future one to the old dentist's office for another attempt at cleaning) to various dentists' offices. We could have stuck with one familiar dentist. We wouldn't be paying for all of these dental visits. We wouldn't have been wasting all of our time shuttling Singularity around to various dental offices. And really, folks, autism parents are already burdened by supervising and transporting our children to all of the various forms of therapy that they receive (and those services are, again, pieced together from things covered by health insurance and things that we have to pay for out of pocket). 

As it is, I don't really know which of these clowns dentists to trust and think that the best thing to do might be to get a third opinion. For which we would have to pay! Unless we can find a dentist who is covered by Singularity's medical insurance under the Affordable Care Act . We will be contacting our case manager to find a dentist whose services (all of whose services) are covered by Singularity's medical insurance, so that we can avoid any kind of split-coverage issues when a similar situation inevitably arises in the future. 

I want to mention that I do recognize that many of these issues also apply to people with a variety of conditions. A person with epilepsy or a heart problem or cancer or whatever, depending on their medical insurance, may spend a lot of money on medical treatments and lose time during which they could be simply living their life in order to deal with their medical condition. And it may ruin them financially. 

There is a bizarre attitude among some people in the United States that it is some kind of a moral failure to be born autistic, with a heart defect, with the wrong number of chromosomes, etc. Unfortunately, many people with this attitude are powerful, and as a result people can be punished for this supposed moral failure by being bankrupted by the medical system. 

Which brings me back to the Affordable Care Act. My politics place me in the "single payer" camp, and while the ACA is less than a single-payer system, it is at least somewhat of a shield for people with pre-existing conditions. And as an autism parent I am thankful that this act has become law, so that our family has a hedge against the autism tax. 

We are fortunate to live in California, where some really dedicated parent advocates at the Autism Health Insurance Project (AHIP) were instrumental in passing the state's Autism Health Insurance Mandate (SB 946). This bill was sponsored by state Senator Darrell Steinberg, who is quoted on AHIP's website as saying, "I vividly recall parents who had to mortgage their homes in order to pay for treatments. To me, that was unacceptable and SB 946, the Autism Insurance Mandate, was the only remedy." 

This mandate defines behavioral health treatments, such as ABA (applied behavior analysis), as medically necessary and requires health insurance companies regulated by the state of California to provide these services. As a result of SB 946, we were able to stop self-funding Singularity's ABA program. We went from a program that we would have had to pay approximately $30,000 a year (yup, that's five digits) to a program for which we pay a co-payment for every service, up to our out-of-pocket maximum, which we reach after approximately halfway through the year. There are also provisions for families who can't cover the co-payment to be covered by California's Regional Center system. 

As an autism parent, I am thankful for all of the activism that brought us the ACA and SB 946.

Musical Participation by Autistic People, or What is Good for Autistic People is Good for Everyone

Note: This post is a re-working of some of the material from the post I was asked to take down, which I discussed in my post "Reflections on a Year of Blogging". 

One non-autism-related component of my identity is that of musician. I play in orchestras. I also play chamber music, which is a form of classical music written for a small enough number of players to fit into one room. The most common groupings are string quartet (2 violins, viola, cello), string trio (violin, cello, piano -- as a violist, I kind of hold a grudge against this grouping!), and woodwind quintet (flute, oboe, clarinet, bassoon, horn). 

The reduced instrumentation is a challenge to the composer's creativity. Sure, it is easy to play with the textures available in an orchestra, but what can you accomplish with a handful of instruments? Many composers used the string quartet as a "study" for a larger work, the same way that a painter might draw sketches before committing paint to canvas. And many composers were so stimulated by the challenge of chamber music that they wrote some of their greatest music for small groups. 

I think that most musicians would agree that playing chamber music is the most rewarding type of music-making. Chamber music is an extremely intimate form. It can be a minefield of issues, but when it comes together it is incredibly exhilarating. Those moments of exhilaration are why we do it.

I love this photo of David Finckel, cello, and Wu Han, piano. They are two of the leading proponents of chamber music in the United States. I don't know what they are playing, but their musical attunement is palpable.

In chamber music, the instruments are fairly evenly balanced, sonically speaking, so that you can hear each individual. There is no conductor indicating what you should do or showing a beat, so everyone in the group must contribute to maintaining the beat and leading through the use of physical gestures when it is appropriate. There should be no such thing as "playing second fiddle", as in a string quartet the 2nd violin bears just as much responsibility as the 1st violin. It can take many years to become proficient at these things. I have been playing chamber music for over 20 years, and it is only recently that I have felt very comfortable leading. 

In such a small group, musical decision making is usually done by consensus, and interpersonal conflict can really disrupt this process. When everyone is playing one-to-a-part, a musician exposes a piece of their soul to the other players in their group, and this can be quite terrifying. So, if someone is feeling uncomfortably exposed, it can trigger interpersonal conflict. Conversely, if there is interpersonal conflict in a group, it can lead to someone feeling that the vulnerable, exposed piece of their soul is being denigrated. 

All of the players are constantly evaluating each other's playing and musical ideas (piece of the soul, remember). They are also constantly evaluating their own playing, which may leave them feeling inadequate, not good enough for the group or not able to make the music sound the way it does in their head.

Many chamber musicians also enjoy polishing a piece and performing it in front of an audience -- for a chamber music club, in a concert series, or at a house concert. They might want to take their piece to a chamber music workshop to receive coaching, and then perform the piece in a master class of fellow participants. Musicians may be coached by someone they have never met. Receiving coaching, even by the most supportive of coaches, can make a person feel as if they are on the hot seat. And depending on the amount of time remaining before the performance, consensus-based decision making might not be possible, so you may have to just go with the flow if your idea is not agreed upon. 

Can you imagine a more perfect storm? Well, yes, imagine dealing with all of this if you are on the autism spectrum and have issues with interpersonal communication and a tendency to become inflexible. It's a wonder that even we NT's can deal with it. And really, sometimes we can't. As I was writing this, both Klailklop and I reminisced about melt-downs and interpersonal conflict we have had in music workshops and chamber music groups!

So, how can we ensure that chamber music opportunities are accessible to an autistic person who wants to and is able to participate? Is some form of accommodation necessary? I have several suggestions: 

1. Be prepared to be more explicit in the ways you handle the decision making process. If the autistic person is showing resistance to adopting a musical idea, ask about his/her idea, and respectfully try it out. The autistic person has a different way of looking at the world and may have some startling insights to contribute!

2. If the autistic musician's idea is not adopted by the group, explain why not. The autistic person might really not understand that a group decides what to do based on what the majority wants to do. They might have a hard time relating to your point of view, and they might remain stuck on their idea. If this happens, you could consider doing it their way, even if it isn't what the group would otherwise do. Think of it as an accommodation. 

3. Be aware that the autistic person may become overwhelmed and need to take a break so that he/she can self-regulate. 

4. If an autistic person has a meltdown, try to remember that he/she isn't giving you a hard time. Instead, he/she is having a hard time. Give the person some space and check back in with him/her after some time. How long would it take you to recover from a meltdown? However long that is, give the autistic person even more time. Doing this graciously may help the autistic person rejoin the group later with minimal embarrassment. 

5. Though it may seem to a neurotypical person that the autistic person is unpleasantly inflexible, take a moment to remember all of the hurdles that person has had to cross in order to participate in the first place. Admire his/her bravery.

6. Treat the person with respect, and more importantly honor their right to participate.

7. If you find that it is too hard for you to work with a specific autistic person in a musical group, don't play with that person again. You might just be incompatible with that person, quite aside from his/her autism. Ideally, everyone should enjoy their chamber music experiences, so if you don't enjoy playing with someone, don't. But don't assume that the only reason you can't play with someone is that they are autistic. 

So, if you read the title of this post, you know that I think that whatever we do to accommodate autistic people is good for everybody. In the same way that adding visual supports to an elementary school classroom is good for everyone (not just the autistic child), in a chamber music group working hard to accommodate each other's needs is good for everyone. 

And of course my personal stake in this is that I want to ensure that in the future my sweet Singularity is able to take part in any activity he chooses.

Letting Go . . . of the Wall

Princess Elsa from the Disney movie Frozen
singing "Let It Go"

Letting go seems to have developed into an ongoing theme of this blog (see here and here), and my experience with Singularity yesterday is just another variation on the the theme. You see, we went ice skating at the Oakland Ice Center. 

Klailklop was otherwise occupied all day, so I proposed that we go ice skating. Singularity immediately said yes. I asked him if he wanted to bring a friend, but he said no. I couldn't get him to explain why, so I assume that it was to have a special Mom and Singularity outing. :)

Skating is something we have done a couple of other times in the past year, with the Cub Scouts and again with a couple of Singularity's friends. Both of those times, Singularity was afraid of falling, but he got right out onto the ice, as long as he could hold my hand. And both times his level of engagement was of simply allowing himself to be pulled along with me. 

Once I had laced both of us into our skates, we headed toward the entrance to the ice. Singularity was scared. I assured him that I would hold his hand the whole time, and that I would not let him fall. He wasn't ready. So we played air hockey. 

We went back to the ice. He was still scared. So he asked me to find another "bad skater" and hold their hand. I found a willing mom of small children, and we skated around the rink holding hands. We did not fall. 

Thus was Singularity convinced that he (probably) wouldn't fall, and he agreed to skate two laps around the ice. On our first lap around the ice, he clutched my hand with one hand, and with the other he held onto the wall. Interestingly, since he was holding onto the wall, he felt safe enough to shuffle his feet and get the feel of the ice. We didn't fall. 

On our second lap around the ice, we had to go around somebody who was just standing still along the wall. Singularity continued to clutch my hand, but he let go of the wall. Again, we didn't fall. And we played air hockey again. 

On our third attempt, Singularity had become much more comfortable with the idea of skating. I told him that we would skate as many laps as we could in 20 minutes. This time, he didn't even try to hold onto the wall. I also noticed that we were going faster. His feet were moving more and more. Singularity was running a commentary on Minecraft, so I bent down to hear what he was saying, and then he said the most amazing thing:

"I'm using one foot to push off and the other foot to glide."

He had really figured out what your body does when you skate. Not only was he doing it, but he was articulate about it. Yay, Singularity! 

As terrific as that is, I was equally impressed by what he had done earlier in asking me to find a bad skater and help them. He had realized that one way not to be so scared was to see me successfully help another skater. It was a really creative way of dealing with his fear. 

Singularity never did let go of my hand, but he did let go . . . of the wall. I'm not sure when he will let go of my hand, but I am sure that he will.

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This post is dedicated, with gratitude, to the mom who let me "help" her around the ice, and as always to the singular kid I am so proud to call my son.

Techniques for Teaching

Any parents of older children reading this probably know the frustration of trying to help your child learn vocabulary words or concepts for homework. I know. Sometimes I am just not able to get Singularity's attention, even after he has done a focusing activity like jumping on the trampoline. It's even rational, in a way, to avoid paying attention to something you're not really interested in. 

I don't know what you do, but when I feel my frustration levels building (become Zen mama, become Zen mama, become Zen mama), I sometimes have enough presence of mind to recall a technique that has worked for me in the past: 

Instead of reading the words and their meanings to Singularity (which would be ignored) or having him read them to me (which would lead to escape-seeking behavior), I ask him to quiz me on the meaning of the words. Somehow this turns the tables on him, and it suddenly becomes fun to see how much Mom knows. I've refined this over time, so that on my first quiz I get all of the words/concepts right. On my the second quiz (the next day), I begin to make mistakes, so that I can see if Singularity corrects me. And correcting people is one of his favorite things to do! 

It can be difficult to know when the learning has been successfully accomplished, so the other thing that I do is make little flash cards for the words and their definitions and ask Singularity to match them. 

OK, I'm not a trained teacher, and I have no idea if this technique has any pedagogical research to support it. However, I am the world's leading expert on relating to and working with Singularity, and this method works for us.

Does anyone have techniques that have worked for them and their children?

Reflections on a Year of Blogging

This past weekend Singularity and I once again participated in the parade for our small town's street fair. Walking down the street with Singularity, I experienced a bit of of déjà vu. It was approximately one year ago that we last paraded with the Cub Scouts and wrote about the importance of Participation in the social life of our community. 

I have now been blogging for over a year. I published my first post, introducing my singular boy to the world, on September 9, 2013. At the time, I had been struck by the interesting installations Singularity left around the house. For some reason, he has not made as many of late, although here are a couple of recent ones I've noticed:

This photo shows the frame to the door to the closet in Klailklop's office, to which a blob of yellow Silly Putty has been affixed. Pressed into the Silly Putty is a plastic representation of a stone pickaxe, such as one would use for mining in Minecraft. A glass doorknob is shown for scale. 

This photo shows a laminated bookmark with the title "Celtic Art" at the top and an illuminated letter "A" (as in Amelia). The bookmark has been placed in the slot between the tines of a heavy chrome practice mute, such as would be used by a violinist or violist who needed to practice without disturbing anybody within earshot. 

Writing this blog has been an overwhelmingly positive experience. The act of writing has served to clarify my thoughts about many things, and it has changed me. As recently as last month, I wasn't sure how the "writer" identity fit. However something happened in the last few weeks to bring this into relief.

You see, I was asked to take down a post I had written. I had written about an autism-related matter that came up in a group that I belong to, and which I found disturbing. I had shared the post with someone in the group, because I wanted him/her to know I had reacted to the discussion. His/her initial response was to disagree with something someone else had said and to say that he/she was happy that I was writing and thinking about it. 

A few days later, however, I received a call from this person. He/she (and possibly other group members?) felt that my post revealed too much about the organization's deliberations and that the unnamed organization would be identifiable to readers who know me well. And I was quoted chapter and verse from the organization's bylaws. 

When I originally wrote the post, I had taken extra care to make it anonymous, but I can see how the identity of the organization and individuals might be discernible to people who know me well. As I didn't want to cause embarrassment to the organization or any of the parties involved, I immediately took the post down.

And then I began to obsess about it. It had been a piece of writing that felt incredibly personal to me, and it had a very important message that I wanted to convey. It felt devastating not to have that post out there in the world any more. 

After almost a week of thinking of little else, I have realized several things. 

One is that this blog is extremely important to me. I have invested a lot of time, energy and love in the posts I have written here. But the things that I am more attached to than my own writing are the messages I am trying to convey here about autism -- the amazing human beings autistic people are, the importance of building a society where they can flourish, the gifts autistic people can give us, the use of shared experiences in the community of autism parents to help us to get through the rough times.

Secondly, the content of the taken-down post remains too important to me to ignore. I am going to rework the material and put it out there again in a different form. 

Last, I feel wounded by the way I was asked to take the post down. The request was made in a matter-of-fact, bureaucratic way. The person who called me, whom I have known for many years and who knows about my family situation, failed to acknowledge the very deep personal significance the post had for me as an autism parent and as a human being. Also, he/she is another writer, and I respect his/her writing, but he/she failed to acknowledge me as a writer.  

If there was any question in my mind about assuming the writer identity, it is settled now. After perseverating over the loss of my blog post, my first action toward getting over it is to write about it on my blog! The act of writing has helped me to get unparalyzed. I already have some ideas about how to rewrite the lost posts. Stay tuned....

I'm fully aware that putting stuff out there in a publicly-accessible form exposes me to potential comments and criticism. It is probably a testament to my extremely small number of readers that I have never had a negative experience with blogging before! (According to Blogger, this blog has had approximately 1900 pageviews since it launched in September 2013.) However, I really do invite dialogue with my readers via the comments section of the blog. Please feel free to disagree with me (respectfully) in the comments, so that we can talk about our differences of opinion. 

And to close things out here, I would like to simply thank my readers for coming along on this journey with me.