Wednesday, June 30, 2010

The Ethical Implications of Classifying Autistic People

The Ethical Implications of Classifying Autistic People

Common terminology in the autism community includes the terms "low functioning" and "high functioning", used to refer to autistic people who seem less able to cope with the neurotypical world around them, and those who seem more able to adapt to the neurotypical world around them, respectively. Yet there are many who insist that these terms are ultimately degrading to autistic people, regardless of which term is applied. In the same vein, others maintain that these labels are necessary to differentiate between differently affected autistic individuals - between those who live and communicate independently, and those who will need lifelong living and communication assistance.

Why do people use these terms?

Particularly common among parents of children with a diagnosis of Asperger's Syndrome or Autistic Disorder, using the terms 'high functioning' and 'low functioning' are ways to differentiate between what are perceived as two types of autistic spectrum disorder: Those who seem more Aspergian in nature, and are considered by many - especially parents and some therapists - to be more mildly affected; and those who seem more classically autistic in nature, and are considered by many - especially parents and some therapists, to be much more severely affected.

Here are two examples, both fictitious, but very likely instances:

Carolyn is a thirty-nine year old woman who has been married for twelve years and has two children. All her life, she has struggled with relationships, basic social skills, and coping in stressful situations, as well as managing depression, and anxiety that she has never understood. As a child, she was expelled from two schools for behavioral issues and misdiagnosed with bipolar disorder, but she did well academically, excelling in courses far above grade level, though she always struggled with executive functioning skills, and was tormented mercilessly by her peers. Today, Carolyn works a steady job and helps with her family. She was diagnosed recently with Asperger's Syndrome.

Jonathan is a twenty-four year old man who is living in a residential program at a group home for the developmentally disabled. He was diagnosed with autistic disorder at the age of three. He did not speak until he was eight, and to this day, speaks rarely, if at all. He was enrolled in state-funded educational services through the age of twenty-one, and frequently elopes - runs away from home without regard to his own safety or the emotional concerns of others. He stims constantly, rocking back and forth, and flicking his fingers in front of his eyes. He has never had a job. It is believed that he is also mentally retarded, although this is a diagnosis with no real means of confirming or refuting.

In the first case, Carolyn's husband, parents, and therapist refer to her as 'high functioning' because her lifestyle is fairly typical and independent, and because she is able to work, attend school, and marry and have children. In the second case, Jonathan has always been referred to by his parents, siblings, teachers, and therapists as "low functioning" because he will never live independently or communicate consistently and effectively with the neurotypicals with whom he interacts on a daily basis.

Both these illustrations, as noted above, are fictitious representations, but both are likely quite similar to actual cases of individuals with varying autism spectrum disorder diagnoses, as are the ways in which the terms 'high functioning' and 'low functioning' are used. There are also many cases where the same individual has been referred to by both terms - typically by different persons, and at different times during his or her life - due to the ambiguity associated with the various possible diagnoses of autism spectrum disorders stemming from the current guidelines in the DSM-IV.

What problems are there with the continued usage of these terms?

There are some within the autism community - a collective of individuals comprising autistic people, the families of autistic people, the friends of autistic people, advocates, educators, therapists, professionals, and researchers - who believe that continued usage of these terms is detrimental for the long-term improvement of quality of life and social advancement of autistic people.

They contend that using such loaded terms as 'high' and 'low' qualify not the functionality or severity of an individual's autism, but rather the worth of that person. As 'high' and 'low' used in reference to social strata, quantitative value, and qualitative value typically imply superior or inferior status respectively, there arises the problem of such a connotation in reference to autistic persons. By labeling autistic people either 'high functioning' or 'low functioning', their worth is measured qualitatively to other autistic people - and neurotypicals - by this designation as either closer to neurotypicality or farther from it.

Thus, long-term usage of these terms continues to define autistic people by foreign labels separating them into two broad, and sometimes murky, categories, of those who seem more capable of coping in a neurotypical world with all of its demands, and those who seem less capable of doing so. The ambiguity of the terms further contributes to the obfuscation caused by their varying usage - as in the cases of autistic people who have been referred to by both terms at different times.

Those who insist the terms are necessary to differentiate between people who are actually 'autistic' - those who are unable to function in a neurotypical world - and people who can, and are thus not actually 'autistic', often seem to contradict themselves. For example, they readily claim, accept, and even assert that a diagnosis of Asperger's Syndrome, NLD, or PDD-NOS places an individual on the autism spectrum; yet in the same breath, they claim that those with such diagnoses are not truly autistic, and that only individuals who more resemble Jonathan are truly autistic. The term 'autistic' is thus reserved for those who have traditionally been diagnosed with childhood disintegrative disorder, autistic disorder, Kanner's autism, or infantile autistic disorder.

But what does this mean for those with Asperger's, Nonverbal Learning Disorder, or PDD-NOS? We are relegated to a narrow, fragile bridge - on one end lies the label 'autism spectrum disorder', and on the other end lies the dual-natured rejection - not normal, not autistic. We are either on the autism spectrum or not. And by the very definition, anyone with an autism spectrum disorder must be autistic. It is simply what the word itself means.

Usage of the terms high functioning and low functioning are only another way to compensate for the reticence to accept the name 'autistic' as referring to all persons on the spectrum. It is a compromise, a way of splitting spectrumites into two distinct camps. Yet this itself poses an inherent problem - the ethical implications of implying qualitative value of autistic individuals based upon the perceptions and preconceived notions of their abilities or lack thereof by non-autistics are dire indeed.

Whether the individual more resembles Carolyn or Jonathan, all autistic individuals possess similar, baseline characteristics that shape the neural pathways that process and respond to information (referred to by Dr. Temple Grandin as an "information processing difference") - whether it be sensory information, social information, or otherwise - which result in the triad of impairments commonly cited by professionals (first recognized by Lorna Wing and Judith Gould in a groundbreaking 1979 paper): social interaction, social communication, and imagination. The degree and manner in which these characteristics are manifest in the individual is often what causes clinicians to differentiate between a diagnosis of Asperger's Syndrome as opposed to Autistic Disorder. Similarly, the degree and manner in which these characteristics are manifest in the individual may make the difference in whether the individual will be referred to as high funtioning or low functioning. The existence of the same characteristics in all autistic individuals is the same - the only differences lie in the degree and manner...

It is primarily parents and caregivers who choose to use these terms most often, in order to clearly identify the nature of autism in their child. Both the parents of so-called' low functioning' and 'high functioning' children insist that these terms are necessary, because there are two types of autism. Some experts disagree, especially in the light of the proposed revisions to the DSM-V in which separate entries for the varying autism spectrum disorders are collectively merged into the single eponymous category-turned-condition: 'autism spectrum disorder'. According to them, autism is a continuum comprised of vast possibilities of different affected individuals - not a disorder with two distinct and opposite subtypes.

Many autistic neurodiversity advocates - many of whom would be labeled 'high functioning' by those who use such terminology - contend that there is no neurological difference between someone like Jonathan and someone like Carolyn. The only differences are the outward manifestations of the autistic mind - and the nature of these, of course, as perceived and understood by neurotypicals.

(A side note: Until fairly recently - the past two years or so - it was widely accepted throughout the psychological and psychiatric communities that autistic people are unable to experience empathy; however, many autistic people who can communicate in typical ways have disputed this, with a 2009 study at Harvard University concluding that persons with Asperger's Syndrome in fact experience the same amount of empathy as neurotypicals, and in some cases, experience more empathy.

My theory concerning this discrepancy of the long-held, mistaken assumption is that neurotypicals assumed that if autistic people experienced empathy, they would express it in neurotypical ways and at socially appropriate times. Yet these same neurotypical researchers are the ones who dialogue about the deficit in an autistic person's ability to appropriately read social situations and nonverbal forms of communication - and the subtleties of social communication - which, naturally, would preclude any typical expressions of empathy. If autistic people cannot read the body language of others, how are they supposed to convey their own feelings through the same means of communication? This mistaken assumption about autism and empathy was perpetuated because of the preconceived notions of neurotypicals who did not think outside the metaphorical box.)

Both professionals and lay members of the autism community agree that Asperger's Syndrome is an autism spectrum disorder - or sometimes called 'a mild form of autism'. Then why do they balk at granting self-proclaimed Aspies the title of 'autistic'? Why must we be divided into two separate groups with a line forbidding crossing over? There is no scientific reasoning to support the social conception that autism consists of high functioning and low functioning individuals - the autism spectrum consists of autistic individuals, who run the gamut of being able to cope with a neurotypical world fairly well or not at all - and nearly every possible point in between.

The obvious implications of using the terms high functioning and low functioning to differentiate between autistic people are the unspoken connotations of more desirable forms of 'autism', and 'levels' or 'grades' of autism. This idea, idependently, is neither with nor without merit; however, when it is applied in practical situations, it has much farther-reaching sociological impact. Autistic people, when referred to consistently as either high or low functioning, are essentially being valued in a quanlitative way - they are being compared to one another on the basis of their ability or lack thereof to cope in a neurotypical world. They are being judged.

Those labeled low functioning will be reluctantly resigned to a lesser state of being, and it is typically the families and friends of those who sport this questionable label who view autism as a disease in need of a cure, as a form of psychological bogeyman which has a neurotypical persona hostage beneath it. Those labeled high functioning will be assigned a more meaningful state of being, praised for their ability to cope in a neurotypical world - where they nearly always must make the compromises, and where neurotypicals rarely, if ever, concede anything to them - and reassured by their friends and families that they are not in fact truly autistic, and merely have a social disorder, or something of the like.

Invariably, this results in furthering the schismatic nature of the autism community - already divided over the issues of a cure for autism, the nature of the causation of autism, the various forms of therapy or treatment available for autism, and the best ways to reach out to those affected directly or indirectly with autism - by dividing autistic people themselves into two broad, sweeping categories which inevitably alienate them one from the other, by implying that to be in one is more desirable than to be in the other, while simultaneously avoiding giving voice to that implication and yet casually and consistently forcing usage of the very terminology that creates this effect.

If these terms were to be eliminated, how can we distinguish between the numerous conditions that are considered autism spectrum disorders, and the general patterns of effect on the individual in question?

The proposed revisions for the DSM-V merge all of the autism spectrum disorders into a single entry, allowing for only one possible diagnosis, not a myriad of possible diagnoses, as has been the case throughout the existence of the current DSM-IV. These revisions have been met with criticism from throughout the autism community, including, but not limited to, adults with Asperger's Syndrome who assert that Asperger's is a unique condition not to be equated with Autistic Disorder, parents of autistic children who claim that their children are more adversely affected than those with a diagnosis of Asperger's, and those concerned about the possible ambiguity of the new diagnostic criteria and the potential for misdiagnosis.

It has been suggested by some that the revisions to the DSM-V provide for one category of autism spectrum disorder, with various labels used to distinguish persons like Carolyn from persons like Jonathan. Some suggest that labels like "Asperger's" and "Kanner's" be retained in the vocabulary of autism spectrum disorders specialist, albeit in an unofficially sanctioned manner. These labels, while still labels that tend to divide autistic people into separate categories, are more neutral and free of unwanted connotations and implications, characteristics that the terms high and low functioning do not possess.

At the end of the day, even if scientists conclusively prove that there is no underlying neurological difference between someone like Carolyn and someone like Jonathan, the general public will always be aware that the Carolyns and Jonathans of this world will exist in very different estates, with the one much more visible and interactive with the greater world community, and the other far less visible, and far less interactive with the greater world community - the layperson without connections within the autism community will see someone like Jonathan and instantly know he is autistic, whereas the same layperson will see someone like Carolyn, and only note a bit of eccentricity, never guessing she is autistic.

So what should we do, moving forward?

We should be sympathetic to the varied reasoning behind the use and nonuse of the terms high functioning and low functioning, working to eliminate terms like these, that have unwanted and unintentional connotations and consequences, in favor of using more neutral terminology to express sociological perceptions of differently affected autistic individuals.


Dan said...

a) I don't really agree in general in making the terminology an ethical argument. It sounds like you are worried that using "low functioning" will hurt someone's feelings and demoralize them. Maybe, but not nearly as much as the bullying and rejection that many autistics experience.

b) I would like to offer some constructive criticism. I think you should try to say what you have to say without defining or pigeonholing people. You use statements like "Such-andsuch person believes this" or "Such-and-such person is like this". Then you will follow with a point, possibly. I think you can just drop the pigeonholing statements and get straight to the point. IT comes off clearer and less combative.

c) You said: "Many autistic neurodiversity advocates - many of whom would be labeled 'high functioning' by those who use such terminology - contend that there is no neurological difference between someone like Jonathan and someone like Carolyn. The only differences are the outward manifestations of the autistic mind - and the nature of these, of course, as perceived and understood by neurotypicals."

Then what exactly is the cause of such differences, if it is not neurological?

d) I have a different understanding of the DSM-V changes. Yes there is going to be a single diagnosis, but that is not disallow a myriad of possible diagnosis. It is just to emphasize the commonalities between the disorders. My understanding is that the severity section will offer the more fine grained diagnosis. Hopefully in the future, as technology and the science improves, diagnosis will get even more fine grained (leading to better treatments too!)

Ylanne Sorrows said...

Hi Dan.

a.) No, that is not the point. I perhaps did not expound enough upon, or make clear enough, my point, which is that: the use of these terms will adversely affect autistic people by the perceptions and connotations attached by nonautistic people through continued use.

b.) I disagree. I believe this is clearer and less combative phraseology.

c.) Autism is a spectrum. Just as no two neurotypical people will have the same strengths, weaknesses, challengers, talents, behaviors, or personality, neither will any two randomly chosen autistic people. Autism is neither a one size fits all category nor several different conditions.

d.) No comment - ask me about this one some other time.

Daniel D said...

Please let me share my experience. I was born in Boston, MA in 1970. At age 4 1/2, I was diagnosed with what was then called "high-functioning Autism" (HFA). I had temper tantrums, had trouble looking people in the eyes, and preferred, much of the time, to be alone rather than schmooze with others (something which remains over 35 years later).

I was also, in many ways, intellectually precocious. I read "The Boston Globe," "The New York Times," and (the old) "Boston Herald American" almost every day. I remember the day when Nixon resigned even though most of my contemporaries were probably watching "Sesame Street" (I also watched that program; just an example).

As part of that precociousness, I have been listening to NPR's "All Things Considered" and "Morning Edition" on WGBH or WBUR (or elsewhere if out of town, or over the web) for thirty years. That's right, I started listening to NPR when I was ten years old!
I watched the old "Ten O'Clock News" on WGBH-TV and the former "McNeil Lehrer Report," also on PBS, soon thereafter.

My parents were informed that, had I been born less than ten years earlier, I would have been placed in a locked ward at the Massachusetts Mental Health Center. What a difference my life would have been had I not received the intervention I did in 1974.

A few things about my childhood. I tested at an Grade 8 reading level in 1979 (Grade 3). I was bullied in some of the "regular" and "special needs" schools I attended for my studiousness and perception that I was "stuck-up."
I did have a couple of "close acquaintences," but no real friends.

During the early part of my adult life, I worked full time at AT&T while attending Harvard Extension School, receiving a Bachelor's Degree in Liberal Arts (concentration in Social Sciences) in June 1997. I have always had a sense of wanderlust, and as an Aspie I prefer to be alone much of the time.

I have travelled alone through 25 US States (plus DC), four Canadian provinces, and ten European countries. I do not wish to brag, but I was (and still am) able to negotiate my way around, by planes, trains, buses, and automobiles, with surprisingly little stress. If anything, the adrenaline of being in a new place (or revisiting some of my favorite places, such as London, Montreal, or anyplace in Switzerland) assuages my usually omnipresent anxiety!

How is this relevant to the "classifications" of Autism? As I stated above, I have travelled around much of the world (South Africa, Australia, New Zealand, Hong Kong, etc., here I come!, soon I hope; I've always wanted to visit) and can state pretty assuredly that I can negotiate the London Underground or the Swiss Railways (SBB-CFF-FFS) as easily as the MBTA or New York Subway. Driving on the Autoroutes of France is not much different than cruising down the Mass Pike (In Europe, keep right unless passing on the various highways, please!).

There are many so-called "low functioning" Autistic people who have skills I cannot do. I know one Artist who can draw better on her worst day than on my best day. She is also a much better cook. However, she gets a ride from Cambridge to her work-site in Brookline everyday. The notion of travelling to Italy unaccompanied (her parents have a house near Florence, in addition to suburban Boston), or even taking the T from Cambridge to Brookline, is not in the cards.

I am still Autistic, with the eccentricities (my word) that entails. My mother is fond of saying (actually, she usually says it when she's angry or frustrated with me) "you know ten ways to drive to Toronto, but you don't know how to change a window screen!?" Dexterity is not my forte. However, if you would like the best routes (the quickest and the scenest; they're not always the same) to the great white north, please let me know.

Thank you for reading.