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!