Thursday, October 18, 2007

The Autism ... Continuum?

If you were to perform a PubMed search for studies that include "visuo-spatial" and "autism", you might come up with 15 studies that indicate differences between the way autistic people process visuo-spatial stimuli versus control groups of neurotypicals. Perhaps this goes a long way towards explaining why many autistic folks - and many of their allies in academia and parenting communities - object to the use of the term "Autism Spectrum". Let me explain.

"What?" the casual observer may ask, "I didn't even realize that the use of the 'spectrum' was controversial". Well, its not really elevated to the level of controversy yet. But as the realization of the need for protection of the rights of autistic people grows, so too does the need to consider the language of the topic. And 'spectrum' is one word that deserves consideration.

Consider, for example, my first exposure to the word. This is a brief outtake of the story of the day we received our son's autism diagnosis:

After standing by while my son completed a battery of behavioral and performance-based tests, I was asked by the psychologist to take Jason downstairs for a while so whe could complete her analysis of results. After about 45 minutes, I brought him back up to the Pediatric Neurology offices for the diagnosis. She worked with me through the initial process of diagnosis, describing each diagnostic criterion and asking if I agreed. After 11 affirmative responses, she knew she had brought me to the point where I understood where she was going with this. And so she continued with a description of the Autism Spectrum - the first I had ever heard of it:
"On this third, you have Asperger's Disorder. In the middle, you have PDD-nos, and the most severely affected are in the Top Third, called Autism Disorder or Classic Autism. Your son is in the top third, probably somewhere in the middle of that segment. This means that he has less of a chance of living independently and functioning normally in society than if he were in the other two sections."
It was as if she had a special "Autism Sextant" that pinpointed precisely where he fell, at the ripe old age of 39 months, on the linear spectrum. And, being totally new to the diagnosis and having a complete void of any competing knowledge, I bought the whole line.

So this was my working knowledge of the autism spectrum - as a linear spectrum going from 'mild' to 'severe' - for maybe a year or so after my son's diagnosis. How simplistic this view now seems to me.

You see, the Autism Spectrum is not just a linear representation of behavior, with one end being the "best" and one end being the "worst". Instead, it describes a continuum of subjective experience and behavior, resulting from neurological atypicalities, which can vary significantly over the lifespan of any individual who is labelled autistic.

Notice that I have selected the word Continuuum here.
Description: Continuum theories or models explain variation as involving a gradual quantitative transition without abrupt changes or discontinuities. It can be contrasted with 'categorical' models which propose qualitatively different states.

So by viewing autism as a continuum, we can incorporate the concept of fluidity of behaviors or experiential factors, thereby creating an increased ability to understand and discuss autism issues in a more realistic fashion. At the same time, we avoid the Spectrum's push towards 'grading' behavioral presentation to the detriment of potentially diminishing the value of the individual.

Too often, productive discussion on the topic of autism is limited by term usage such as "high-functioning" or "low-functioning." You will occasionally see comments such as "Person A is just Asperger's or HFA, and therefore can't be considered alongside Person B, who is non-verbal with SIB's." And there is something to this, as everyone I think agrees that some autistic individuals' symptoms or characteristics are much more debilitating than others. But to simply compare HFA to LFA is far too simplistic. Such a view ignores tremendous variation in "clusters" of abilities and disabilities related to autism. I have read or spoken with several autistic adults, and a common theme is that "some days are better than others". Or, to put it another way, a person can appear to function at different levels at different times. I think the continuum concept captures this fluidity.

Another criticism I would offer of the linear spectrum concept is adopted from a researcher-friend of mine. She has stated (paraphrasing here) "Spectrum? Bahh. That's just something the Behaviorists cooked up to separate those they could help from those they couldn't figure out."
I think what she means by this is that allowing ourselves to label an individual as being in the lowest functioning category provides a wealth of excuses for ourselves to consider them outside the realm of "help-able".

Here's another angle, albeit somewhat Sophist by nature. Taking this idea of a Spectrum to its extreme, then at any given moment ONE PERSON is the most autistic in the world. One person is also the least autistic, and is just one person away from no longer being considered autistic. This is purely conceptual and has no pratical application other than to highlight how the Spectrum can result in a "ranking" of behavioral presentation.

I have also been part of numerous discussions on the topic of a cure where this linear spectrum concept is inadvertently interjected into the conversation. Usually the commenter will say, in reference to their efforts to provide a cure for their child's autism, "All I want to do (with treatment X or intervention Y) is to move him/her up the spectrum. Is that so wrong?" What the parent is insinuating, though probably unintentionally, is that their child's current 'level' of autistic functioning can be incrementally, quantitatively improved by degree and the progress can be tracked. This is almost never the case. Typically, when parents talk about their children's progress, it goes something like this,
Parent A: "Well, she has started talking now in single words, still isn't forming sentences. But her use of sign language is improving all the time. Unfortunately, it seems that she has a lot of anxiety since school started, and her sleep patterns are very erratic and unpredictable."
Parent B: "My son is not talking at all, and has never really had significant anxiety problems. He's always very calm, like an old soul. His fascination with airplanes is really taking over his other hobbies right now - he won't read anything but that topic. And ever since we moved out of the city, he doesn't scratch or bite his arms anymore like he used to."
In both of these examples, there is no clear delineation of improvement or regression. The changes in the kids are Fluid. They are on a Continuum.

This discussion, as do so many others, boils down in large part to the fact that we don't have a very good working definition of autism. Autism Disorder is still, from an academic standpoint, a term used to describe a set of observable symptoms. I hope the academics consider the importance of defining and endorsing a better way of describing the tremendous range of individuals that carry the label of Autism than placing them all on a linear Spectrum.

30 comments:

Another Voice said...

This is a very thoughtful and thought provoking post, good job. I have never really objected to the term spectrum as a tool for visualizing degrees. Most clinical people resort to this because they don’t believe the lay person can understand much more than simple concepts.

Also, the implied precision of their Dx has made many of us choke. The same psychologist that just projected out 20 years, will refuse to use diagnostic data greater than two years old, and will tell you how complex humans are and how much a person can change.

Ask the psychologist to determine where you are on the spectrum of “normal”. After just a few minutes of that discussion you will both be ready for Zen class.

Niksmom said...

I couldn't have said it better than "another voice" already did! Great post and spot on! My son cannot be diagnosed by school b/c of that very fluidity you mention; his "language and mental age" they say is too low but he has so many "higher-functioning" abilities at the same time. I dunno...to me he's just Nik!

Autism Diva said...

Nice post. For some reason "spectrum" doesn't immediately call to mind a line to me, but I guess it should. In my psych textbooks they show the electromagnetic spectrum as a wide colored line
http://photo.net/bboard-uploads/00FbyE-28752084.jpg

Larry Arnold has an idea that autism is more of a topography in 3 or more dimensions, if I recall correctly. I like that idea, but it's not one psychologists are likely to use.

Maybe psychologists should use Amanda Baggs' video where she explains those rocks. I think that idea came from Dave Spicer.

Autism Reality NB said...

"Notice that I have selected the word Continuuum here."

Indeed.

I am sure parents and professionals for years to come will look to your commentary as a turning point in their struggle to help improve the lives of autistic persons/persons with autism.

Now I can truly help my severely ... oops shouldn't say that should I ... autistic son. (As an evil behaviorist I just can't seem to shake my simplistic linear thinking. I guess I will have to follow your example and spend more time studying Star Trek and Dr. Who.)

Sharon said...

Like Autism Diva, this post reminded me of Larry Arnold and his topography model. I read about it on a UK email list several years ago.

It's clear that the spectrum idea is flawed, or has been misinterpreted exactly as you have described.

I find it astonishing that you were told what you should expect for your son when he was so young. The psychiatrist who diagnosed Duncan, just said at the end of the consultation, 'yeah, you're right. He's autistic.'
Various tests later should his levels at different skills, and on letters written by docs over the years he's labelled as having 'moderate to severe' autism. The funny thing is, I saw my blog recently on a list of blogs about raising aspie kids!

Steve D said...

AV and Niksmom -
Thank you for your comments. I'm glad they make some sense to you.

Diva and Sharon -
I would love to read Larry's topography model. Do either of you have a link to it?

Steve D said...

Harold -
"I am sure parents and professionals for years to come will look to your commentary as a turning point in their struggle to help improve the lives of autistic persons/persons with autism."
Only an egoist would believe his blog would accomplish something like you are describing.
One of my intentions when I write is to contribute to an overall body of thought and knowledge that Autistic people are to be valued and treated with dignity. I'm sorry you have such a problem with that.

Geoff said...
This comment has been removed by the author.
Geoff said...

I see your point, but I see the spectrum as a color wheel, which is already a continuum, ie: like this

Patrick said...

Yeah, I get the point, especially when one gets a diagnosis like Major Depressive Disorder (moderate.)

Some folks want things broken down so far, but then other folks don't give it the weight it deserves, just because of the (moderate.)

Like I'm not going to be relying on chemically synthesized neurotransmitter reuptake inhibitors for the Rest of my Life.

What am I supposed to do, go throw myself in front of a moving vehicle to get an upgrade to (severe)?

I swear, there are even days that are more depressed than others while I am on 'Big Pharmas' treatments.

Navi said...

hm, I see it in the terms of the electromagnetic spectrum as well, or the color spectrum, purple is no less or more a color than yellow.

I think the layperson also sees colors when they hear spectrum, rather than a line.

Your diagnostician is the only one I've heard describe the spectrum in that way, but maybe there is a large number of people describing it in that way and as such it creates controversy in the term.

Continuum is a better term, but the problem is the layperson is less likely to understand it.

Also, I feel it is important to divide/diagnose Autism into more than just autism. It would bring us further away from the notion that one thing should help all autistic children, or one thing should cause all forms of autism which is very far from true.

I find Autism Reality NB an interesting antagonist. He goes back and forth between valid points and arguing for what seems like the sake of arguing.

Anonymous said...

The idea of "high functioning" and "low functioning" is absolutely tied up with the word "spectrum" High and low brings to mind a line, like a thermometer with high and low temperature or a barometer with high and low air pressure.

All parents that I know of try to place their child somewhere on that linear continuum, though they might say, "he does very well in taking care of his hygiene and can cook, but he's very vulnerable to abuse, so I'm afraid for him to ride on a bus because he'd let anyone come back to his apartment and stay the night...."
Which places the person high on the self-care line and low on the personal safety on public transportation line, or whatever depending on how you want to conceptualize it.

In my opinion, just my opinion, Harold is very bitter because what he wants more than anything else is for someone to say, "Harold, your kid belongs in an institution. You are very right to want to put him away so he's no longer your responsibility. In fact, any good dad would have put that boy in an institution long ago."

The autistic adults won't ever tell him that, so he hates the autistic adults.

bullet said...

I have never seen the spectrum as a straight line. The best advice I was given in real life was by one of Tom's paediatricians who said it was not important to know exactly where he could be placed on the spectrum, but rather to look at his individual skills and difficulties.

Joel Smith said...

I don't like the idea of "continuum" because someone (lots of someones) will do exactly what is done with "spectrum" and assume that people further to the right are "severe" and people further to the left are "mild" and such, with most people being in between these two "extremes".

I agree with others who think Larry has this right.

Suzanne said...

I need to say this before I read comments. Maybe it is an artist thing, but I do not see "spectrum" as linear,(in fact, I've been taught it's a wheel) nor with specific breaks. The Doc may have been explaining in those terms to help you visualize (???) Pinpointing exactly where one fits in the spectrum seems silly to me, but I like the term spectrum for many personal reasons.
As for myself, I think I'm infrared ;)

or, as AV said!
also
Diva RE Larry's topographical view. cool.
sharon, and SteveD prognosis schmognosis, isn't that a bunch of bs? I was fortunate to know it was inacurate.
geoff- yes! a wheel

Thauts said...

To badly paraphrase a favorite Doctor of mine, the topography of autism is "more like a big ball of wibbly-wobbly... stuff".

You've got multiple variables; multiple scales radiating off from each other in all different directions and the more you try to reduce that complex set of coordinates to a single simple phrase, the more imprecise and worthless your descriptions become.

Marla Fauchier Baltes said...

Very interesting post. What if you consider your child to be "all over the spectrum" if you are using that term. Skills so low on it and skills very high on it. Have you looked into the genetic factors of autism. Our daughter meets all the criteria for autism and we recently found out she has an extra chromosome 6p. I would be interesting in hearing what you think of genetic disorders and autism.

Marla Fauchier Baltes said...

Very interesting post. What if you consider your child to be "all over the spectrum" if you are using that term. Skills so low on it and skills very high on it. Have you looked into the genetic factors of autism. Our daughter meets all the criteria for autism and we recently found out she has an extra chromosome 6p. I would be interesting in hearing what you think of genetic disorders and autism.

AnneC said...

Navi said: I see it in the terms of the electromagnetic spectrum as well, or the color spectrum, purple is no less or more a color than yellow.

That's exactly how I see it as well. I still like the term "spectrum" because to me it signifies the fact that you can have a whole group of people who are all autistic, but who aren't necessarily going to look, act, or present exactly the same way. I don't think of it as a "severity" indicator at all.

I think Amanda (Baggs) wrote at one point that "functioning levels" should be only applied to individual skills, as opposed to an entire person (I'm paraphrasing here, so hopefully I got it right). That makes a lot more sense to me, and is more realistic, since I've found that people make high/low "functioning" distinctions based on single factors like speech, etc., that don't tell you anything else about the person at all.

VAB said...

Have you ever seen this:
http://www.mugsy.org/media/bishop.gif

I thought it was an interesting representation. The accompanying article is here.

In the end, though, I think it is really too complex to be modeled accurately. I'd like to see that 3D one though.

laurentius rex said...

So?! (or should that be !?)

Bloody reification innit

metaphor gets mistaken for reality.

How about pallete? (nah not them things as fork lift trucks manage but paints)

Phil Schwarz said...

It's been obvious to me for a long time now that the autism "spectrum" is not a one-dimensional line, but a multi-dimensional space -- each dimension representing a different, unrelated strength or deficit.

The problem with the linear model is that it shapes our thinking and expectations about ability in areas that are not causally related one to the other.

Joseph said...

I prefer to think of it as "the cultural construct with unclear value that confuses everyone."

Maddy said...

Excellent. I'd never thought of it like that. We share a similar experience with the initial diagnoses. I swallowed it hook line and sinker. The message was definitely 'doom.'
Best wishes

Club 166 said...

Thought provoking post.

Spectrum, as well as continuum, both contain linear references to me.

I guess I'm more in line with Arnold's vision of a space in 3 or more dimensions that would define autism.

In that light, although I like the term "autism sphere", that would limit it to 3 dimensions, and might not be useful enough. Perhaps "autism domain" or "autism gamut" might be more useful, with various vectors inside this virtual space that could be defined.

Joe

Jennifer said...

Myself, I think of the "spectrum" as something like the CIE diagram. The center of this diagram is "white" or "normal", but all the other colors are also beautiful and useful. Children should not be relegated to one corner of this diagram - they may actually occupy a space somewhere - with lower verbal skills, higher mathematical skills, lower empathy skills, higher perceptive skills, etc.

kristina said...

Sorry to write in so late here; I'm reflecting on the various metaphors and the color scales. I'll venture to say, Charlie's shown me colors I hadn't noticed or imagined before---on and beyond the spectrum.

LIVSPARENTS said...

So, we currently have a one dimensional line. But it really incorporates, behavior, communication and socialization...all interrelated, granted but go with me here, that's three dimensions. Add to that possible physical implications and time and we've reached...The Fifth Dimension! "When the moooon is in the seventh hoooouse"

I think plotting a three dimensional point between behavior, communication and socialization, crude as it may be, should be the minimum for plotting the person in "Autism Space", that sounds better than putting them in an "Autism Box"...

good stuff

Casdok said...

Yes a very interesting post

Ballastexistenz said...

Anne, that's very close to what I meant, but also "at this point in time" and also containing a qualitative as well as quantitative dimension (since there are many non-standard ways to have a single skill).

The "at this point in time" part acknowledges that some day, year, moment, whatever, it can change.