I belong to a small, bimonthly writing group with two poets. Many of the writing exercises we do are not really poetry-specific, but the last two times we have met I have written poems. Today's exercise was to write about something that meant something to us, but which had been lost. Here's mine. It is about loss and resilience.
When Singularity was eight years old
We scooted to school.
Schuss rattle rattle, schuss rattle rattle.
One day I left his helmet on the playground.
An oversight. An accident. A mistake.
Somebody took it.
THEY STOLE IT ON
PURPOSE!
I WILL KILL THEM!
Singularity
Could not comprehend.
They took it,
But not from him.
From him, helmet stolen.
From me, scooter riding with my treasured boy
Purloined.
Thieved.
Pilfered.
Helmet replaced, but not the same.
No schuss. No rattle.
Months pass.
And then one day As I scooted away alone I heard
“Mom, I want to come with you!”
Schuss rattle rattle, schuss rattle rattle, Even though we never saw that helmet again.
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.
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.
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 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.
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 ofThe 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 dramaParenthood,Claire Danes' portrayal of Temple
Grandin in HBO's eponymous biopic, and the titular character in the movieAdam. 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 movieRainman. Clickherefor
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 andThe 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.
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.
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.
Today I thought I would write about the services that Singularity receives, how we fit them into our lives, and the effect it all has on our family life. But first, a Singularity-ism:
The old rubber bands on the violin bridge trick. This is the violin I learned to play on as a child. When I was nine years old, we found it in my great aunt's attic and fixed it up. It is not a fine instrument, so it didn't particularly worry me that Singularity was "using" it. If you've read some of my other blog posts, you may have noticed another "theme and variations" thing going on with the rubber bands. They are endlessly interesting. And always showing up in places where I least expect them.
Anyway, back to the services that Singularity receives....
At school
These services are all provided under Singularity's IEP:
One hour of speech therapy, broken into two separate group sessions. Speech at school is focused on pragmatic use of language and narrative language.
One hour of occupational therapy, broken into two separate group sessions. OT at school is focused on the self-regulation skills needed to maintain focus and attention.
One hour daily of one-to-one instruction in language arts with the special education teacher. This is new this year. Singularity needed this service to help to compensate for what seemed like social-cognitive deficits that were making it difficult to understand human motives in stories.
In the past, Singularity also participated in adapted physical education (APE). He graduated from APE about a year and a half ago when he had mastered everything that they teach there. He is now in regular PE (which he always was anyway), and his level of engagement and participation is increasing steadily.
When you enter the special education process, you will not be presented with menu of services offered by the school. This is, I suppose, the way they keep costs down. If parents don't know what is possible, then they won't ask for it, right? We were lucky to be working with an OT who had worked in the public schools in the past, and she suggested that we ask for APE. I am putting this out there, in case you think that adapted PE would help your child. There is a lot of power in finding out what services are being provided to other children with similar issues in a different school district. The other thing I want to say about special education is that if there is something you think that your child needs, you should bring it up. Does your child need an aide just for recess? Help with handwriting? Accommodations in the classroom? This is what the "I" in IEP is all about. Call an IEP meeting if you have to. You always have the right to call an IEP meeting. If your school or school district does not offer the service that you think is educationally necessary for your child, they are still responsible for providing it. Perhaps another school nearby offers the service. If not, they may need to pay for you to receive the service elsewhere. Really. I didn't really mean to go off on this tangent about special education. It just comes up. I'm sure that I will delve into it more in a future posting.
Outside of school
Monday: occupational therapy in a clinical setting. When I say clinical setting, I mean a clinic with several incredible gyms filled with all sorts of swings, obstacle courses, spinner boards, therapy balls, etc. Singularity has worked with the same OT for over four years. They are now working a lot on self-regulation and sequencing issues, although in the past they worked a lot on vestibular issues.
Tuesday: 3 hours of applied behavior analysis (ABA) therapy at home. Our ABA provider is Easter Seals. This service is now covered by our medical insurance at Kaiser Permanente, thanks to California Autism Insurance Mandate (SB 946). This mandate defines ABA services as "medically necessary" for people on the autism spectrum and makes it much easier for families to get access to the service. In the past, we funded ABA ourselves.
Wednesday: 3 hours of ABA at home.
Thursday: 3 hours of ABA at home. Cub Scouts once a month.
Friday: Nothing!
Saturday morning: Speech therapy, which we also receive from Easter Seals/Kaiser.
Sunday: Nothing!
I also didn't mean to go into such detail about medical insurance and autism, but, again, it just comes up.
What does all of this mean for our daily life? This is a lot of therapy. I don't think that Singularity remembers a time when he didn't have all of this going on. Perhaps for that reason, he is a really good sport about it. It can be a challenge to fit everything in. Some days we fail to squeeze in a 30-minute session of therapeutic listening. Some days the bath gets postponed until tomorrow. Fortunately, working independently is one of Singularity's ABA goals, so each ABA session has a designated time for working on homework. Two birds with one stone! And some days homework doesn't get done, and it's just not the end of the world. Nine hours of ABA in our home ever week, during which either Klailklop or I must be present, does sometimes feel intrusive. Singularity's treatment plan is mostly directed toward Singularity's behavior, but it also contains some "family goals" designed to change the way Klailklop and I interact with Singularity. When things are not going well, it can be really irritating to have some young whippersnapper evaluating our parenting. (We are usually about twenty years older than our behavioral interventionists.) But with only one or two exceptions, we have become very fond of our team members. In varying degrees over time, a lot of Singularity's social life occurs during ABA sessions. Several of his ABA goals pertain to peer interactions, so we import Singularity's friends into the sessions. This is a lot of work to coordinate, and honestly I am not doing a very good job of it this fall. We have been seeing our occupational therapist since Singularity was in kindergarten. There is a lot of history and trust in that relationship. She has become very dear to me. Since OT is in a clinical setting, it seems like less of an intrusion, but it does involve schlepping Singularity around during rush hour. Speech therapy is also in a clinical setting. More schlepping. But it all becomes part of a routine, which can be kind of comforting. Another thing that all of these services and professionals means for our daily life is a lot of meetings to discuss goals and progress and a lot of communication between home and professionals. I am pretty sure that the parents of typically-developing children don't spend so much time communicating about their children. It's a pretty full schedule that doesn't leave a lot of unstructured time. I can't say for sure how Singularity feels about it, but I certainly relish those Friday afternoons and weekends. Did I ever mention that Singularity is an only child? I can only imagine how much more difficult it would be to manage all of this in a family with other children whose needs must also be considered.
Two of my friends recently used the word “disability” in
connection with Singularity in two separate conversations. In both cases,
Singularity’s peers had excused some of Singularity’s unexpected behavior on
account of his disability. (The term “unexpected behavior” comes to us from Michelle Garcia Winner’s “social thinking” curriculum.)
Did I ever mention that we are incredibly fortunate
to be part of a school community that does an excellent job of educating
children about autism and promoting tolerance of all kinds of differences?
Right, I probably do that in many posts I write here. But it never hurts
to be grateful.
Anyway, I confess to being taken aback at hearing the word
disability. I didn't feel offended that they might think of him that way, just startled. You see, I don’t really think of Singularity as being disabled. I
just think of him as, well, himself. In most ways, I am not blind to the degree
to which he requires accommodation. I spend an inordinate amount of time
thinking about and making arrangements to accommodate Singularity. But when I
think about my relationship with him, we are both just who we are – no
accommodations needed. Or maybe much of my approach to him is accommodation, but
I’m so used to it that it seems normal.
Klailklop (my husband and Singularity's father) just read the paragraph above and asked whether I didn't think that every relationship is accommodation. Indeed. However, I also think that most relationships involve reciprocal accommodation, but relationships with Singularity tend to rest upon the other person's ability to accommodate him. And there's the disability part.
I also see Singularity’s autism as the wellspring of his
superpowers and his unique view of the world. One of his superpowers is
mathematical ability. Warning: if you are not interested in math and geometry, you may want to scroll down a few screens!
One of Singularity’s current special interests is solid
geometry. We have pages and pages of information about it in Singularity’s math
binder, which we started Singularity was in first grade and became obsessed with
enormity in general and exponents in particular. This is our second time around with solid geometry, as he was quite interested in it toward the end of second grade. (He is in fourth grade now.)
Singularity was interested in Pascal’s Triangle,
a triangular array of numbers that leads in many interesting directions. And he has recently been interested in the sequence of Triangular numbers.
The sequence of these numbers is present in the diagonal line starting at the first (or
last) 1 in the third row of Pascal’s Triangle.
Is it common for high-functioning people on the autism
spectrum to love triangular numbers? Daniel Tammett writes about his childhood interest
in triangular numbers in his autism memoir, Born
on a Blue Day.
Anyway, this week, Singularity started talking about “tetrahedronal numbers”.
Now, I don’t think that he read about
them anywhere, although he does have excellent information-seeking skills. I
think that he was thinking about triangular numbers and tetrahedra (otherwise known as a pyramid with a triangular base) and realized
that you can build a tetrahedron by stacking triangular layers on top of each other. It is interesting (to me at least) to note that the sequence of tetrahedral numbers is present in the diagonal
line starting at the first 1 of the fourth row of Pascal’s Triangle.
Here’s the
page I had to write out to make sense of tetrahedral numbers for myself:
This is an amazing synthesis of information from Pascal’s
Triangle and solid geometry. As you can see, Singuarity’s autism can a great
strength. His brain is wired up a bit differently, and it helps him to make this
kind of mental leap.
While I’m here talking about disability and strengths, I
thought that it would be interesting to do a quick review of some other
perspectives on the disability status of autism:
The disability rights community has fought
valiantly over the last fifty or so years to eliminate discrimination against
people with disabilities, and we can thank them for such landmark pieces of
legislation as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA).
IDEA specifically addresses autism as one of the “umbrellas” under which
educational services are provided, via the loved and hated instrument of the
Individual Education Program (IEP).
Many members of the autism self-advocacy
community, such as the Autistic Self Advocacy Network (ASAN), also embrace the view of autism
as a disability. The neurodiversity movement is an outgrowth of the self-advocacy community and sees autism not as a
disease to be cured, but rather part of the natural variation in humanity.
It is the neurodiversity movement that I find particularly encouraging.
They have done an excellent job of highlighting the special abilities of high-functioning
people on the autism spectrum while also advocating for appropriate levels of accommodation for others who are affected more severely by autism, and it is becoming more common for corporations
and universities to seek out autistic people for jobs in research labs, and as
programmers and software testers. As Temple Grandin is often quoted, "Some guy with high-functioning Asperger's developed the first stone spear; it wasn't developed by those social ones yakking around the campfire." These
employers are prepared to make accommodations for the disabling aspects of autism in order to have access to what these workers uniquely have to offer. It gives
me, as an autism mom, a great feeling of hope that there will be a place in the
world for my treasured child to live a happy and productive life.
I play the viola, and I love to play chamber music. String quartets often contain a movement using a form called "theme and variations". I confess to feeling irritated with these movements most of the time, for example the theme and variations movement of Schubert's "Trout" quintet. However, one of my favorite quartet movements, interestingly also by Schubert, is the theme and variations movement from the "Death and the Maiden" quartet. Schubert originally wrote the themes of these movements in art songs, which I suppose he used as the musical equivalent of sketches used by an artist as studies for a larger work.
(As an aside, this link to Death and the Maiden goes to a performance by the Borromeo Quartet, which is probably the first of the major chamber groups to perform not with printed music, but with PDFs on laptops. See if you can tell when they "turn the page". I found it to be much less obtrusive than turning a physical page.)
At this point, you may be wondering what this has to do with autism or with Singularity. Well, this post is all about a visual theme and variations.
Autism is currently
conceived by “the powers that be” (OK, just the American Psychiatric
Association) as a spectrum disorder. I personally do not find the “spectrum”
imagery helpful; it seems very one-dimensional and suggests that there is a
single continuum between “severe autism” to “barely-there autism”. I can’t even
imagine where Singularity would land on such a spectrum. Instead of a single
spectrum or axis, I think that there are multiple axes (plural of axis, not
plural of things used to chop wood). If you asked me where Singularity fell on
the axis of pragmatic use of language, I would tell you that he falls somewhere
in the middle. Flexibility? Special interests? Social motivation? Intellectual
ability? Social-cognitive deficits? He falls at a different point on each axis. He falls at a different point on each axis at any given time!
And still I
feel that it is important, for the purposes of this blog -- and more
importantly for making decisions about what interventions to pursue in the
future -- to try to address the question of “how autistic” my child is.
When
Singularity was four years old, he was diagnosed as having Pervasive
Developmental Disorder - Not Otherwise Specified. This was under the guidelines
of the fourth edition of the Diagnostic and Statistical Manual (DSM-IV) of the
American Psychiatric Association. PDD-NOS was a diagnostic category for people
with some qualities of autism, but not enough to cross the threshold for having
classic autism (whatever that is) or Asperger's Syndrome. In earlier versions
of the DSM this was referred to as "Atypical Autism".
When
Singularity was seven years old, he was diagnosed again by our health insurer
as having “autism spectrum disorder”. The other diagnostic choice used by our
insurer at the time was “autistic disorder”. Neither
of these diagnoses would appear to address the impact of autism on Singularity’s
life. I am actively resisting using the word “severity”, because I feel that
talking about severity puts us into a deficit model, and I want to be more
focused on what people with autism can
do. However, this feels like an uphill battle.
As many
people in the autism community are aware, a new edition of the DSM was released
in May 2013. DSM-5 does away with the diagnostic categories of Asperger's
Syndrome and PDD-NOS and combines them under the "Autism Spectrum
Disorders". I have been monitoring the conversation about DSM-5 with some
interest, because I wanted to know if anything would change about Singularity's
diagnosis and whether the services he receives would be affected.
If you are
interested in reading the full DSM-5 diagnostic criteria for Autism Spectrum Disorder, I refer you to the Autism Speaks
website where it is available in its entirety. For my purposes, I am going to
focus on its “severity” components, which I have cut and pasted here.
Table 2 Severity levels for autism spectrum disorder
Severity level
Social communication
Restricted, repetitive
behaviors
Level
3
"Requiring
very substantial support”
Severe
deficits in verbal and nonverbal social communication skills cause severe
impairments in functioning, very limited initiation of social interactions,
and minimal response to social overtures from others. For example, a person
with few words of intelligible speech who rarely initiates interaction and,
when he or she does, makes unusual approaches to meet needs only and responds
to only very direct social approaches.
Inflexibility
of behavior, extreme difficulty coping with change, or other
restricted/repetitive behaviors markedly interfere with functioning in all
spheres. Great distress/difficulty changing focus or action.
Level
2
"Requiring
substantial support”
Marked
deficits in verbal and nonverbal social communication skills; social
impairments apparent even with supports in place; limited initiation of
social interactions; and reduced or
abnormal responses to social overtures from others. For example, a person
who speaks simple sentences, whose interaction is limited to narrow special interests, and how has
markedly odd nonverbal communication.
Inflexibility
of behavior, difficulty coping with change, or other restricted/repetitive
behaviors appear frequently enough to be obvious to the casual observer and
interfere with functioning in a
variety of contexts. Distress and/or difficulty changing focus or action.
Level
1
"Requiring
support”
Without
supports in place, deficits in social communication cause noticeable
impairments. Difficulty initiating social interactions, and clear examples of
atypical or unsuccessful response to social overtures of others. May appear
to have decreased interest in social interactions. For example, a person who
is able to speak in full sentences and engages in communication but whose to-
and-fro conversation with others fails, and whose attempts to make friends
are odd and typically unsuccessful.
Inflexibility
of behavior causes significant interference with functioning in one or more
contexts. Difficulty switching between activities. Problems of organization
and planning hamper independence.
Apart from
the philosophical bone I have to pick with the word “severity”, I think that
these are much more useful diagnostic criteria, as the impact of each
individual’s challenges can be evaluated separately. Which brings
us back to the question of “how autisic” Singularity is.
According to these
diagnostic criteria, I believe that Singularity has level 1 autism. He generally
has no intellectual impairment. Indeed, he has some tremendous intellectual
gifts, but still he requires 1:1 support in the school environment, mainly to
help him to self-regulate, to contain unexpected behavior, and to remain
focused on the work at hand. He needs frequent breaks, and the busy classroom can
be quite overwhelming for him.
He is
extremely good at math or anything involving symbolic systems and patterns. Written
language and math are the ultimate symbolic systems. I have mentioned
previously that Singularity first began reading when he was 18 months old. When
he was in first grade, he was obsessed with enormity, and we talked a lot about
powers of ten. Our bathtub tile had all of the powers of two – up to 254
– written in tub crayon, and Singularity knew his stuff. In second grade, he
memorized the cubes of numbers up to 100. At one point, I had to memorize them
up to 603, and that was really hard for me! Singularity has a phenomenal working memory.
In second grade, his teacher did an assessment in which she asked him to
memorize 20 numbers and recite them back to her backwards. He did this with
ease, even with digressing in the middle and then going back to the beginning
and reciting the numbers perfectly.
However,
Singularity does seem to have some cognitive gaps that may make certain
intellectual tasks difficult for him. He has had to work on sequencing of
actions in a story. He struggles when asked open-ended questions. He is not a
natural reader of fiction, as it may be hard for him to imagine what is
happening from the protagonist’s point of view. I’m not entirely sure about
this last one, actually. There has been a lot written about autistic
individuals’ lack of “theory of mind”. However, Ido Kedar, a teenager whom the world sees as
severely autistic because he lacks verbal language and engages in stimulatory
behaviors, writes eloquently about how maddeningly frustrating it has been for
him to have intact intelligence and theory of mind trapped inside an
uncooperative body. Also, Singularity has been surprising me with what he does
understand about what I am thinking.
Singularity
is socially motivated and very attached to his friends. Ah, his friends. We
have been ever so fortunate to belong to a community that is very understanding
of autism. Singularity also has an empathy that can be lovely to behold. But
his conversational style is idiosyncratic. He is prone to chatter on about his
special interests or his own imaginary world. He is still working on
back-and-forth conversational rhythms. He still requires support in self-care routines that his age peers have mastered.
In contrast, one of my dear friends has a son who also has autism. Her son is not performing at grade level at school, has a lot of stims, still has difficulty speaking, is in a special day class, etc. However, his self-care skills are excellent. He can cook for himself. His behavior is much easier to manage that is Singularity's. Is this other boy more or less severely affected by autism than Singularity? How could you ever place this lovely boy at a one point on a single spectrum?
Under the new
DSM-5 diagnostic criteria, I don’t believe that any change in the services
Singularity receives will be forthcoming. He won’t be offered anything new, but
no services will be be withdrawn either.
I realize that
there is still anxiety among other sub-groups within the autism community,
especially among people formerly diagnosed with Asperger’s Syndrome. In my
opinion, the old diagnostic criteria for Asperger’s Syndrome failed to address
the degree of impact (also known as the dreaded term “severity”) it has upon
people’s lives. I do think that the label “Asperger’s Syndrome” does identify a
particular flavor of autism and that there are issues of identity tied up in
the loss of it as a diagnostic category, but I am not trying to address that
here.
At any rate,
I hope that you can see what I mean about there being many axes. Singularity is
at a different point on each axis, and I still don’t think that it’s possible
to place him at a single point on a spectrum. However, I do think that it is
helpful to have a diagnosis which indicates that he continues to require
support.
Now I would like to leave you with one of Singularity's most interesting art installations ever:
Honey jar Bear-shaped honey jar Onion with the top sliced off Jar of sun-dried tomatoes in olive oil Coin sorter
Kitchen scale
I am particularly impressed with the vision it took to put the non-flat end of the onion into the top of the sun-dried tomatoes jar, and to use the flat end of the onion as the base for the objects above. I hope that Singularity develops this art. He is beginning to remind me of Andy Goldsworthy!
This is of one of my favorite of Singularity's installations. He had opened one of the kitchen drawers and pulled out the hard-boiled egg slicer, which he embellished with clips that are supposed to be used to reclose plastic bags. Did you know that an egg slicer can also be played like a miniature harp? I am always fascinated with his personal vision.
Singularity has an IEP (individual education plan), which is our school district's commitment to individualizing his education. The "off the shelf" public education doesn't meet all of his needs, so it needs to be individualized. It should be like buying a garment off the rack and having it tailored to fit you perfectly.
At the beginning of our special education adventure, we found the IEP process quite mystifying. I was fortunate that our SELPA (in California this stands for Special Education Local Plan Areas, which are the administrative units set up to ensure compliance with state and federal special education laws) offered training for volunteers to act as resource parents. I took this training, and it has been immensely helpful.
We have had exceptionally good fortune to live in a small town with excellent schools that have wonderful, committed, creative teaching staff and other professionals. The principal at Singularity's school sets a highly inclusive tone, and it always brings a tear to my eye when she talks about what a privilege it is for her school to host our district's special day classroom. Our experience of the IEP process has never been anything but collaborative and cordial. This is not to say that we have never issues with the services Singularity receives, but we have always been able to work things out.
Others have not been so fortunate. I recently received an email from a mom with a kid with special needs who needed some advice on how to handle a situation at her child's school. Her child is fully included in the general education classroom, and he has an IEP. A month into the school year, she found out that his teacher had not read the IEP. Not only that, but the teacher has been crumpling up the child's work in front of him. The child feels humiliated, understandably. My friend met with the teacher to discuss the issues collaboratively, but the teacher continued her inappropriate methods.
I am shouting here, because it makes me furious, outraged, incensed, livid, irate to hear that this is happening.
This situation underscores the importance of knowing our rights under the law. The law of which I am speaking is IDEA, the federal Individuals with Disabilities Education Act. This is the law which mandates that all children must be provided with a "free and appropriate" public education, that they are entitled to "highly qualified" teachers, and that they receive an IEP.
School districts can really take advantage of parents who are not aware of their rights, so I believe that it is important for autism parents to make it clear to the IEP team that they are well-informed.
Here is the advice I sent to my friend:
If <his> teacher has not even read the IEP, the school district is out of compliance with the IEP. I think that you should immediately write a letter to the school district (I'd suggest the head of Special Education, the Superintendent, and the President of the School Board, with copies to the principal and teacher) so that you can (1) document the conversations you have had with the teacher and what <your son> has reported to you, (2) insist that they come into compliance with the IEP immediately, (3) place <your son> with a different teacher who is more effective in working with students with accomodations, (4) discipline <your son's> current teacher for the negligent and harmful methods she is using in her classroom, and (5) do some form of training for the entire teaching staff of the school to acquaint them with their responsibilities under the IDEA laws. Also, I think that you should tell them that if they do not comply immediately with requests (2) and (3), you are going to file a "due process" complaint.
Of course, you will probably not get all of what you ask for, but this would certainly light a fire under the school district. You made a valiant attempt at setting a cooperative tone with the teacher, to no avail, and in my opinion it is time to really throw the book at them. There is an excellent guide to due process on the Disability Rights Education and Defense Fund (DREDF) website:
My friend wrote back and told me that she would be quoting me. I am not sure how things have turned out for my friend, but her school district will know that she means business. I suspect that they will quickly accede to her most important demands, so as to avoid a potentially expensive legal process.
Disclaimer: I do not intend to use this blog as a polemic, and the irate tone of this post is just a reflection of my emotional reaction to my friend's issue. It just really made my blood boil! Please stay tuned (such an archaic turn of phrase these days) for more good-humored reflections on autism parenting.
