INTRODUCTIONThis piece of writing is an attempt to explain my current conceptualization of autism.
I come at this subject both as someone very interested in neuroscience/cognition and as an autistic self-advocate.
Since being diagnosed myself, and entering public discussion (initially just to find out if there really were people who shared certain experiences with me), I've often found myself in the midst of discussions where the question "what IS autism anyway?" goes round and round and back and forth but never seems to be satisfactorily resolved.
Lots of theories and abstractions and oversimplifications get thrown about, and it can be quite a confounding thing indeed to even determine if the people involved are even talking about the same thing.
And yet, those of us who live every day of our lives as atypically-brained persons somehow manage to concretely exist; we are in no way dependent on the speculations of others to actually see and feel and experience reality the way we do.
This disconnect -- that gulf between the very real experience of existing "autistically" in the world, and the various attempts to define autism from the outside -- has long confounded me, and I would guess many others as well.
This writing has been a long time coming -- over the past few years I've read many papers and studies, communicated with other autistic adults (and a few children and adolescents), and just generally tried to hash through all the weird linguistic and cultural matter surrounding neuro-atypicality in its various manifestations.
Basically what I want this article to be -- and what I hope it at least marginally succeeds at being -- is something I can point people to when they want to know what I actually think autism is.
The ultra-short version is that I think autism is best understood as a
cognitive style, based on biological underpinnings pertaining to brain development, connectivity, and structure. Like any human attribute fitting these terms, autistic brain wiring can lead to both strengths and weaknesses, ability and disability, good experiences and bad ones.
If you want to know
why I think this to be the case, you'll need to read the long version -- that is, the rest of this article.
I.
A while back, Canadian cognitive science researcher and autistic adult Michelle Dawson wrote
one of the clearest descriptions of autism I have ever read, which begins with the following:
Autism is a neurological difference classified as a developmental disability. Autistic people have atypical behaviours in three areas: social interaction, communication, and restricted interests or repetitive behaviours. Autistics are different at the most basic level available: how we experience the world, and how we learn from it. Autism presents with measurable differences in perception, attention, memory, intelligence, etc. The autistic order and progress of development is different from the typical version as is autistic brain structure, allocation, and function.
From the other side of the academic (and geographic!) pond, Larry Arnold (autistic adult and long-time disability advocate in the UK) offers
another decent conceptualization of autism:
What autism is to me is a set of differences, probably neuro biological that govern the way we interpret the social, perceptual and sensory world. We are born with a different programme.
I won't quote either Ms. Dawson or Mr. Arnold out of context (much)* further than that -- I would definitely suggest reading the posts I've linked above, though. I know that these two individuals in particular have disagreed on numerous occasions and with regard to various subjects, and hopefully I've not offended either of them by quoting them in such close proximity, but I wanted to open this attempt to explain how I currently conceptualize autism by acknowledging that this is
not brand-new territory by any means. I did not invent the conceptualization I am presenting here -- all I've done in this context is organize what I've learned over the past 2 years or so into something I hope is at least somewhat coherent.
I feel it is important to do this because there are so many people who view autism primarily as:
(1) A set of static behaviors a person must exhibit constantly in order to be considered autistic
(2) The permanent, intractable inability to do certain things (in the absence of either intensive behavioral therapy or some as-yet-nonexistent biological treatment)
Both of those views are, I believe, inaccurate (as in, they don't hold up to anything resembling good scientific and statistical scrutiny), and potentially harmful to autistic people.
II.
Viewing autism as a narrowly-defined "set of behaviors" can lead to mistaking stress or even physical health problems as "the autism" -- meaning that the autistic person may not end up getting needed medical treatment, or may be treated inappropriately. Additionally, woe unto the autistic person who perhaps does not always
look "stereotypically autistic" -- in this situation, the danger is that the person's concerns and difficulties may be ignored, disregarded, attributed to laziness or "character flaws". While a person's tendencies in action, demeanor, and language use/development can certainly
indicate aspects of their neural wiring, the notion of trying to define autism purely in terms of outward behaviors misses the fact that autistic people are neither frozen in time nor constrained into one particular presentation regardless of environment.
Similarly, viewing autism as a permanent lack of certain skills (such as, say, the ability to use language in any capacity, or to relate/respond to other people) can lead to everything from educational neglect of autistics ("He'll never learn this anyway so why should we bother attempting to teach him?") to the paradoxical removal or denial of necessary supports when an autistic person
does learn a particular skill ("You can express yourself so well through typing now, you can't possibly
really need help with daily living tasks like a
real autistic person would.").
Needless to say, I see those formulations as leading to nothing good. Nevertheless, I am very sensitive to the fact that people who use those formulations do so out of fear -- fear, perhaps, for the future of an autistic person they know who seems to be struggling tremendously with the most basic communication and self-care activities. Such people tend to have a very "zero sum" view of the world, and seem to genuinely believe that talking about autistic strengths, or pointing out that autistics can indeed learn, grow, and develop, or even suggesting that the world needs to be more tolerant of different kinds of people will somehow hurt their loved one's (or their own, as some autistics think this way) chances of obtaining truly useful support.
And...while I don't expect to change the minds of such persons by writing this, I figure this way I can at least have something to point people to when it becomes necessary for me to explain how I conceptualize autism, and
why I conceptualize it that way.
III.
The graphic below (click to view a larger version) is an attempt to show clearly how the concept of "autism" operates on multiple levels, which is part of what I think leads to the tremendous amount of confusion and controversy surrounding it:
People with the kinds of cognitive tendencies that (today) are considered indicative of autism have existed probably as long as humans have been around. However, as far as I can tell, the first modern application of the word "autistic" to describe a particular cognitive minority was in a set of papers published individually by a Dr. Leo Kanner, in 1943 (which you can actually read online
here) and a Dr. Hans Asperger in 1944 (and there is
some confusion as to who actually identified the "syndrome" first of these two doctors).
Kanner and Asperger never actually met, however, it is fairly clear from examining their work that they were more than likely studying the same population -- a subset of individuals who demonstrated marked atypicalities in learning style, development, and behavioral tendencies. However, at that time nobody really had any idea
why these tendencies appeared in some people -- which led to a rash of psychoanalytic and even pseudoscientific theories (such as the infamous "refrigerator mother" hypothesis, which blamed autistic development on early maternal neglect).
Even now, it is not precisely known exactly how autistic brains differ from nonautistic brains. However, there are some preliminary studies indicating that certain cognitive style elements tend to correspond with certain structural neural differences. The blue column on the left side of the diagram summarizes some of the "how, why, and what" of autistic brains from the physical standpoint.
My guess is that there are probably multiple underlying structural variations that can produce "autistic phenotypes", and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go "all the way down" to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive "module" overlaid upon a typical brain.
This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be "broken versions of normal brains" are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be "removed" or "trained out" by simply eliminating surface behaviors.
IV.
The yellow column in the middle of the diagram summarizes some aspects of how autism manifests
from the standpoint of the autistic person (and, perhaps, the well-informed cognitive scientist, not that those are necessarily mutually exclusive!). Autistic brain differences, quite logically, seem to lead to differences in how a person thinks, perceives, and processes information (both from the outside environment and from the internal environment of the person's brain/body).
While one cannot conclude that autistic people all think the
exact same way, or have the same personalities, or have the same exact externally-manifesting skills (you might want to read up on
outgroup homogeneity bias if this sounds strange), there do seem to be certain
trends in autistic perception and cognition.
Much research has been done, for instance, in the realm of assessing visual-spatial processing in autistics -- while of course accounting for the fact that some autistics are blind, and that some have other disabilities that can affect what precise external skills actually develop to the point of being testable, it does seem clear that many autistics have peak abilities in certain visual/spatial tasks.
Areas like figure-ground discrimination, the
Wechsler block design subtest, and tasks involving locally-oriented processing tend to be strong in autistic persons -- to the point where some have suggested that
good performance in these areas might be a "diagnostic" factor in and of itself!
Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, "uneven" development (which may include significant delays alongside "advanced" skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the "whole person" is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength
and weakness depending upon the context.
Then there is the matter of what autistic people ourselves can understand and reveal about how we think, perceive, and experience the world. While I think there is good reason for caution here (as autistic people should not be made to feel as if we are obligated to dissect our lives and minds on demand -- we are people, not exotic exhibits, after all), and while most of us will not write detailed autobiographies, it also strikes me as vitally important for autistic people to have a place in defining who and what we are.
Additionally, interactions between autistic people (in which communication about perception and internal processes takes place -- and this does not always occur through words, but also through pictures, actions, and objects, to name a few possibilities) can help us understand how we operate, which in turn can help us figure out new ways to improve our daily lives and functionality. There are many things I can describe now (that I couldn't before) about how
I think and perceive due to reading the writings of other autistic persons. Those writings helped provide a workable vocabulary for certain very significant phenomena that I frankly didn't even realize
could be described or expressed before.
This is somewhat difficult to describe, but in some ways I see the community of autistic people who now write to each other (and interact with one another in other ways) functioning as a kind of "symbiotic feedback-insight generator".
While we all deal to some extent with the limitations of the vocabularies provided to us by our culture (e.g., many of us are probably used to describing ourselves in terms like, "crazy", "weird", "smart and stupid at the same time", or even in terms applied to us in the context of past mental misdiagnosis), it also seems that sometimes we manage to come up with novel and useful ways of describing or referencing something about how we operate. Other autistic people might then read what we've written in this regard, recognize it as familiar, and thereafter become more able to describe more accurately how
they think/perceive/operate -- in other words, a positive feedback mechanism emerges.
E.g., when I was about twenty years old I described a phenomenon in which objects around me seemed "broken up into pixels, atoms, and molecules", during a period of extreme stress. I also noted that sometimes it seemed like the objects around me did not specifically stand out as having human-defined significance -- that is, when I looked around I saw shapes and colors but I had to think extra hard to remember that certain arrangements of shapes and colors meant "toothbrush" or "bicycle", etc. At the time I had just seen the film
The Matrix, so I made an analogy to when the characters became able to see the environment around them as "source code" -- somehow something about that scene felt eerily familiar.
I was quite thoroughly shocked a few years later to read things written by other autistic persons regarding "fragmentation" of vision, or "having to work hard to recognize objects". I was then further intrigued to learn of papers describing experiments which indicated autistics tended to perceive "low level data" more directly than nonautistic people.
The
sense of being able to perceive that data, and of having it become more difficult to maintain abstractions and object boundaries when stressed, has always been present for me -- I just never knew it was in any way unusual, or possibly correlated with this thing called "autism", until a few years ago. And while it may be very difficult (and perhaps not always desirable) to "quantify" individual perceptual experiences of this nature and correlate them with cognitive research findings, it is definitely things like this which compel me to conceptualize the "cognitive style" element of autism as highly significant.
V.
The orange column on the right of the diagram summarizes what most people probably think of
as "autism" -- that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.
This is where we see such things as diagnostic checklists, observations about a person's developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.
What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.)
and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.
It is very common, for instance, to come across people shocked to find that a diagnosed autistic person can speak (or write, for that matter) -- despite the fact that not even the clinicalized
DSM-IV criteria for Autistic Disorder necessitates a language
delay, let alone a total lifelong lack of language. And writing is not even mentioned at all. See Criterion B below, emphasis mine:
B. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
And lest anyone think that this DSM-IV represents some "watered down, wishy-washy version of autism that does not resemble at all the original 'severe' version described by Kanner", I offer the following from his original paper (again, emphasis mine):
"...most of these children were at one time or another looked upon as feebleminded", despite having "good cognitive potentialities" [characterized by, among other things], "...[t]he astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences."
This is not to say that all autistic individuals will speak/write, let alone have "astounding vocabularies". Nor is it to say that autistic people (or any other people, for that matter) are only valuable as persons if they can speak, or that nonspeaking individuals do not face different and often greater challenges than individuals with speech.
Rather, all I am trying to point out here is that there is simply no basis for claiming that autistics are "officially" categorically unable of speech
or communication, regardless of individual variation in those abilities. I also do not believe that any human who is conscious does not communicate in
some way.
Having communication difficulties does not mean that it is impossible for someone to ever communicate, or that autistics who use language (as adults or as children) in any capacity are somehow profoundly categorically different from those who do not.
This is important because too many people, I think, draw damaging and unnecessary distinctions between (for instance) speaking and nonspeaking autistics, mostly in the context of suggesting that if someone can type, sign, or speak, they have nothing to add to the wider discussion of how to best help autistic people live less precarious, happier lives. And this does not just apply to speech either -- it also applies to things like mannerisms, reactions to particular situations, and the presence/absence/delay in developing of particular skills.
All of these things can vary widely between individual autistic people, despite there being underlying structural and cognitive similarities -- we are still, after all, different
individuals every bit as much as nonautistic people are.
Furthermore, even such things as whether or not we are ever diagnosed, or at what age, can depend greatly on circumstances. *To quote Larry Arnold again:
[Autistic] differences as they develop involve social factors it is inevitable that at different times in different circumstances and in different cultures, that those differences are going to be either overlooked, alternatively explained or accepted in different ways, according to what is the norm, not just in terms of social interaction, but in terms of the interpretation of illness disability and difference too...Autism is bound to be complicated by other factors that will [also] affect the developmental trajectory.
What I take from all this is that while there is no escaping the "observational" aspect of autism (as frankly most of us
do come across as "different" throughout large chunks of our lives even if we can sometimes "pass", and not explaining that stuff in terms of autism does not magically make it go away!) the layer where all of us on the spectrum do, albeit fuzzily, converge is not to be found in stereotypes, superficial observations, unrealistic expectations of "developmental stasis", or even in the ever-shifting sets of "official criteria" being employed in different countries.
VI.
If I accomplish anything with this, I hope it is that I manage to get people who read it to at least consider looking more deeply rather than assuming that autism means something like "lack of empathy", "an extreme male brain", "maladaptive behavior" or even "primarily a social problem". It is my impression that autism is none of these things, but that it is rather a neurological configuration that tends to lead to particular cognitive tendencies.
How these tendencies actually manifest vary from person to person, and throughout any individual person's life, and generally autistic people do have difficulties functioning in a culture that was not designed for people like us. But this does not mean that we are categorically unhappy, ineducable, or any other negative.
Autistic people are real, have always been real, even when we weren't called "autistic", and we would continue to perceive, think, memorize, and generally exist in the world the way we do if the "labels" suddenly changed or disappeared. Hence, in my mind a conceptualization of autism (such as I have attempted here) is necessary not so much in its semantics but in the convergence of its content with reality.
The reality of human existence is that brains and perceptual styles do not come in only one flavor, and right now it is also true that some flavors (again, regardless of what they happen to be called) are still widely misunderstood. These misunderstandings affect not only what gets written in textbooks, but people's actual lives. Because of this, efforts must continue not only to understand the principles by which various minds operate, but to make sure the common conceptualization of "valid person" does not limit itself only to majority flavors.
References:
Note: My listing of an article/paper by a particular person (or persons) simply indicates that that article/paper seems to demonstrate something useful and true about how autistic brains work. Inclusion of an article/paper does not in any way imply that I agree with everything the author has ever said, or that I agree with the value judgments made about autistic brain functioning in some of these references -- in my opinion, cognitive science should be about determining how brains do what they do, not about presupposing that autistic brains are "unhealthy".
Physical Characteristics of Autistic Brains
1. Autism and the Brain (from autism.about.com)
2. Autism and Minicolumns, by Ian Parker
3. Minicolumns, Genius, and Autism, by Ian Parker
4. Gray and white matter imbalance – Typical structural abnormality underlying classic autism?, by Leonardo Bonilhaa, Fernando Cendesc, Chris Rorden, Mark Eckert, Paulo Dalgalarrondo, Li Min Li and Carlos E. Steiner
5. Autism and Abnormal Development of Brain Connectivity, by Matthew K. Belmonte, Greg Allen, Andrea Beckel-Mitchener, Lisa M. Boulanger, Ruth A. Carper, and Sara J. Webb
6. Dissociations of cerebral cortex, subcortical and cerebral white matter volumes in autistic boys, by Herbert M. R.; Ziegler D. A.; Deutsch C. K.; O'Brien L. M.; Lange N.; Bakardjiev A.; Hodgson J.; Adrien K. T.; Steele S.; Makris N.; Kennedy D.; Harris G. J.; Caviness V. S.
Cognitive/Perceptual Processing in Autistic Brains
1. Enhanced and diminished visuo-spatial information processing in autism depends on stimulus complexity, by Armando Bertone, Laurent Mottron, Patricia Jelenic and Jocelyn Faubert
2. Enhanced discrimination in autism, by Oapos; Riordan, M.A.; Passetti, F.
3. Seeing it differently: visual processing in autism, by Marlene Behrmanna, Cibu Thomasa and Kate Humphrey
4. Visual perception, from Laboratory for Research into Autism
5. Brains of Those With Autism May Be Alphabetically Different, by Joan Arehart-Treichel
6. Cognitive mechanisms, specificity and neural underpinnings of visuospatial peaks in autism., by Caron MJ, Mottron L, Berthiaume C, Dawson M
EDITS:
- Introduction added 15 November, 2008
