Our weekly regimen

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.

Autism as a disability, or “the D word”

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 Social Security Administration considers autism a disability, and people with autism who are not able to work as the result of their autism may be eligible to receive disability benefits. 
• 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.

Theme and Variations

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.

Theme: 

Variation 1: 

Variation 2: 

Variation 3: 

How autistic is Singularity?

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!

People with autism as individuals

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.