The fact that the Asperger’s/autism spectrum has stubbornly been included in the Diagnostics and Statistics Manual for Mental Disorders (DSM), despite its establishment as a neurodevelopmental atypicality, has always baffled me.
To truly understand the present, one must study the past.
While writing my last post about new proposed mental health legislation currently under consideration, I found something interesting: some historical information about the autism spectrum.
I’ll take you on a brief but scenic journey; I’m not acutely aware of any potential trigger warnings, but this post deals with the history of mental health, so do proceed with caution as needed.
In the beginning, autism was perceived to be a subset of schizophrenia, manifesting in early childhood. The DSM (Diagnostics and Statistics Manual for Mental Disorders, published by the American Psychiatric Association, or APA) has indeed referenced the terms “autism”/”autistic” since its original release (the DSM-I) in 1952. Except that it wasn’t called “autism” then. In the DSM-I, the word “autism” was used, but remained undefined, simply woven into the descriptive paragraph for “000-x28 Schizophrenic reaction, childhood type”.
Thus, autism was not realized to be neurodevelopmental at all; it was given the designation of a “mental disorder” from the git-go. The APA assumed “jurisdiction” over autism, without much of a struggle/contest. Now, the field of psychology might be relatively respected, and its authority and scientific validity may be essentially undisputed these days (for the most part; there are indeed some well-thought-out dissenting opinions and some surprising new findings)…but that hasn’t always been the case. My own psychology professors of 20 years ago marveled at how, in the not-too-distant past, universities rejected the field of psychology as a science and refused to create psychology departments or offer psychology classes; psychology in decades past was held in similar esteem to metaphysics and New Age philosophy today (imagine an official four-year or graduate university opening an Astrology department; that’s unheard of).
Psychology (and especially its medicalized counterpart, psychiatry) isn’t always exactly as scientific as we’ve been led–and might like–to believe. How does one quantify concepts like love, grief, rejection, or those gut feelings? Most of us have experience with all of the above, and would swear by their existence. But good luck quantifying that.
Psychology/psychiatry had some other issues, too. Everything from flawed theories (demonic possession) to abusive treatments (purging, bloodletting, and shock therapy) to sexual preoccupation (Sigmund Freud) to its perceptions of–and assumptions about–women. Public opinion of psychology during its early days wasn’t real high. In order to gain ground as an accepted, legitimate field (even if not an authentic science), my professors said, proponents had to be persistent and semi-aggressive. They also had to publish. Prominent individuals set up “research” laboratories, and in 1844, 13 head-honchos of “insane asylums” in the United States formed what would eventually come to be known as the American Psychiatric Association (APA).
Mental illness records were scant, with little attention paid to those with mental disorders, other than to process them through the penal system when needed. Thus, the hospitals were necessary, as a debatably more “humane” alternative to the prison system. But, we know that the hospitals weren’t exactly vast bastions of paradise, nor were their administrators and staff innocent angels.
In 1917, during World War I, soldiers coming back from battle were displaying a previously-unseen phenomenon known as “shell shock” (known and recognized as PTSD today). The APA, then known as the American Medico–Psychological Association developed a plan adopted by the Census Bureau for gathering health statistics across mental hospitals.
Four years later, the now-newly-name-changed APA collaborated with one single medical school to develop a broadly accepted psychiatric classification system that would be included in the original edition of the American Medical Association (AMA)’s Standard Classified Nomenclature of Disease. The primary utility of this system was for diagnosing patients with severe psychiatric and neurological disorders.
In 1949, shortly after the end of World War II and again predominantly motivated by returning soldiers with “disturbed” mental states, the APA saw a serious opportunity and pounced. The WHO had just released its sixth revision of its International Classification of Disease (or ICD-6), of which the APA grabbed hold of, and reworked the mental-related section into a manual of its own: the Diagnostic and Statistics Manual for Mental Disorders, or the DSM (subsequently known as the DSM-I).
In the DSM-I, autism looked like this:
“Here will be classified those schizophrenic reactions occurring before puberty. The clinical picture may differ from schizophrenic reactions occurring in other age periods because of the immaturity and plasticity of the patient at the time of onset of the reaction. Psychotic reactions in children, manifesting primarily autism, will be classified here. Special symptomatology may be added to the diagnosis as manifestations.” ~(according to WrongPlanet (link to specific discussion), which includes the full quote, although the link to the DSM-1 PDF no longer exists; bold emphasis mine).
The DSM-II was released in 1968, in which, again, the word “autistic” was merely mentioned under the diagnosis “295.8 Schizophrenia, childhood type”. The full entry reads:
“This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.” ~(according to a University of Oregon link hosting a PDF file; clicking on link directly opens the PDF file; emphasis in paragraph mine).
The DSM-III, released in 1980, finally separated autism out from under the schizophrenia umbrella. This was definitely a step forward, but the name itself was a misnomer: “Infantile Autism”, which has six criteria, listed with bullet points:
A. Onset before 30 months of age
B. Pervasive lack of responsiveness to other people (autism)
C. Gross deficits in language development
D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal
E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects
F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia
In this version, we see the embryonic origins of our current/contemporary views of autism; the resemblance is there, for the first time. There’s a more specific age besides “before puberty”. The tightening of the diagnostic criteria did have a drawback; it made diagnosis of anyone older than 2 1/2 years old fairly difficult; if you weren’t diagnosed between 2-3 years old, your chances of getting properly diagnosed dropped considerably.
Contemporary key (conventional) symptoms are described, such as the “lack of responsiveness”, speech delay, and environmental responses (thumbs-down, though for the use of the word “bizarre”). Interestingly, the APA has done a complete “180” on the schizophrenia issue; whereas for the first and second DSM releases tucked the autism/autistic terminology under pediatric schizophrenias, the third edition specifically excludes it from autism criteria.
The DSM-III underwent a major revision in 1987, in which the word “Infantile” was removed, in favor of just plain “Autistic Disorder”, following a debate about the “infantile” term. The criteria here are greatly expanded:
“At least eight of the following sixteen items are present, these to include at least two items from A, one from B, and one from C.
“A. Qualitative impairment in reciprocal social interaction (the examples within parentheses are arranged so that those first listed are more likely to apply to younger or more disabled, and the later ones, to older or less disabled) as manifested by the following.
- Marked lack of awareness of the existence or feelings of others (for example, treats a person as if that person were a piece of furniture; does not notice another person’s distress; apparently has no concept of the need of others for privacy);
- No or abnormal seeking of comfort at times of distress (for example, does not come for comfort even when ill, hurt, or tired; seeks comfort in a stereotyped way, for example, says “cheese, cheese, cheese” whenever hurt);
- No or impaired imitation (for example, does not wave bye-bye; does not copy parent’s domestic activities; mechanical imitation of others’ actions out of context);
- No or abnormal social play (for example, does not actively participate in simple games; refers solitary play activities; involves other children in play only as mechanical aids); and
- Gross impairment in ability to make peer friendships (for example, no interest in making peer friendships despite interest in making friends, demonstrates lack of understanding of conventions of social interaction, for example, reads phone book to uninterested peer.
“B. Qualitative impairment in verbal and nonverbal communication and in imaginative activity, (the numbered items are arranged so that those first listed are more likely to apply to younger or more disabled, and the later ones, to older or less disabled) as manifested by the following:
- No mode of communication, such as: communicative babbling, facial expression, gesture, mime, or spoken language;
- Markedly abnormal nonverbal communication, as in the use of eye-to-eye gaze, facial expression, body posture, or gestures to initiate or modulate social interaction (for example, does not anticipate being held, stiffens when held, does not look at the person or smile when making a social approach, does not greet parents or visitors, has a fixed stare in social situations);
- Absence of imaginative activity, such as play-acting of adult roles, fantasy character or animals; lack of interest in stories about imaginary events;
- Marked abnormalities in the production of speech, including volume, pitch, stress, rate, rhythm, and intonation (for example, monotonous tone, question- like melody, or high pitch);
- Marked abnormalities in the form or content of speech, including stereotyped and repetitive use of speech (for example, immediate echolalia or mechanical repetition of a television commercial); use of “you” when “I” is meant (for example, using “You want cookie?” to mean “I want a cookie”); idiosyncratic use of words or phrases (for example, “Go on green riding” to mean “I want to go on the swing”); or frequent irrelevant remarks (for example, starts talking about train schedules during a conversation about sports); and
- Marked impairment in the ability to initiate or sustain a conversation with others, despite adequate speech (for example, indulging in lengthy monologues on one subject regardless of interjections from others);
“C. Markedly restricted repertoire of activities and interests as manifested by the following:
- Stereotyped body movements (for example, hand flicking or twisting, spinning, head-banging, complex whole-body movements);
- Persistent preoccupation with parts of objects (for example, sniffing or smelling objects, repetitive feeling of texture of materials, spinning wheels of toy cars) or attachment to unusual objects (for example, insists on carrying around a piece of string);
- Marked distress over changes in trivial aspects of environment (for example, when a vase is moved from usual position);
- Unreasonable insistence on following routines in precise detail (for example, insisting that exactly the same route always be followed when shopping);
- Markedly restricted range of interests and a preoccupation with one narrow interest, e.g., interested only in lining up objects, in amassing facts about meteorology, or in pretending to be a fantasy character.
“D. Onset during infancy or early childhood Specify if childhood onset (after 36 months of age)”
It almost starts to sound like the APA got stuffed-full of themselves and endlessly kept typing just to hear themselves talk. They put really fine points on a wide range of criteria, but then only require a handful of those criteria to be met, which almost seems contradictory, in a way.
The DSM-IV was released in 1994. Not only were the criteria for autism revised, but they were also condensed to be less wordy and more categorized. The organization has definitely improved, as various symptoms began to be grouped together more coherently. Sixteen symptoms were now listed and only six needed to be exhibited in order to be diagnosed with autism. Two of the six symptoms must be based on “qualitative impairment in social interaction,” one based on restricted and repetitive behavior, and one of qualitative impairment in communication.
In this revision, autism retains its “Autistic Disorder” moniker from the 1987 revision of the DSM-III. (Note: the whole of the text below is supposed to be blue; for some reason, the formatting wouldn’t budge; I apologize if that gets tough to follow.)
“(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)
(A) qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or “mechanical” aids )
(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
(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play
(III) The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder”
In addition to Autistic Disorder, “Asperger’s Disorder” was added to the DSM-IV/1994 revision for the first time, as its own entry, as 299.80 “Asperger’s Disorder”. Those criteria are:
“(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”
There are several fundamental similarities between Autistic Disorder and Asperger Syndrome; both have impairment in social interaction, lack of eye contact, challenges regarding establishing/maintaining peer relationships, lack of social/emotional reciprocity, repetitive and/or stereotyped behavior patterns, restricted areas of interest and activity, preoccupation with parts of objects, and so on.
The major difference between the two lies in speech development; Asperger’s people experienced no speech delay, whereas Autistic Disorder people did; some remain nonverbal as adults.
The interesting feature to note here is that while the “Asperger’s Disorder” entry in the DSM-IV specifically excludes schizophrenia (and the DSM-III of 1980 did), the Autistic Disorder entry does not specifically mention schizophrenia exclusion (in either the 1987 revision of the DSM-III, nor the 1994’s DSM-IV); the only mention of exclusion involves Rett’s Syndrome or Childhood Disintegrative Disorder.
What about the DSM-V?
In 2013, the DSM-IV was replaced (although not mandatorily) by the release of the DSM-V. After intense debate, the short-lived “Asperger’s Disorder” entry was demolished, instead absorbed back under the newly-coined Autism Spectrum Disorder entry (which absorbed more than just Asperger’s; several more related “cousins” to autism got regrouped and combined).
In my opinion, although the DSM-V made some valuable and beneficial changes to autism (mostly because more current knowledge has been accumulated and finally implemented), we got screwed.
Because not only does the DSM still include autism (which it shouldn’t, as autism has long been established NOT to be a mental illness in itself), but also the current DSM makes no attempt (that I could find) to continue to separate autism from mental illnesses. Exclusions of schizophrenia, psychosis, etc, are not included; in fact, other mental illnesses aren’t mentioned at all. And in fact, those criteria, near the bottom, says:
“Specify if: Associated with another neurodevelopmental, mental, or behavioral disorder (Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)” ~(emphasis mine).
Thus, the battle continues–the battle to try to separate the Autism Spectrum (a neurodevelopmental anomaly) from mental illness.
It almost seems like the “powers that be” don’t want to admit they were wrong. They appear to keep Autism wrongfully included in the DSM, and keep it intertwined with mental illness.
The US federal government even contradicts itself on the issue. On one hand, autism is listed under NIMH’s “mental illness” category (ugh!), where it launches into a full discussion of the autism spectrum, but stops just short of saying that it’s a mental illness (although that’s what page visitors are going to conclude, because they’re seeing it on a mental illnesses page!). But on the other hand, things might be moving forward, albeit slowly; autism is also listed on the NIH’s Neurological Disorders and Stroke page, where the more-forward-thinking authors have described autism as “group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning” (bold emphasis mine).
But because of that ancient tie to mental illness that stubbornly persists, we’re still associated with “mental instability” (as seen by the conventional world), and thus we’re subject to any “mental health”/”mental illness” legislation that comes to pass.
It’s time to resolve this issue. Because until we do, we’ll be subject to unfair and uncalled-for legislation that potentially threatens our freedom, such as the bill that’s currently going through the United States House of Representatives that would loosen current privacy laws to make it much easier to release our mental health information to our families, caretakers, or “other people” involved in our care without our consent, or to theoretically force potentially harmful and ineffective treatments and medications on us against our will (!) For more information on this issue, please see my previous post.