I figured I would take a closer look at the proposed changes the American Psychiatric Association is talking about for the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) set to be released in May 2013.

Again, I want to stress that I don’t have any training in psychiatry, so please don’t consider me an expert!  I’m just trying to write about my own reactions as I learn and think about this myself.  The APA has a website set up that has a lot of information about these changes, and explanations for why they are making them.

The 4th edition of the DSM gives criteria for five separate diagnoses that either sometimes or always fall under the autistic spectrum:

  • Autistic Disorder
  • Asperger’s Disorder
  • Childhood Disintegrative Disorder
  • Rett’s Disorder
  • Pervasive Development Disorder – Not Otherwise Specified

(It seems that the word “syndrome” can apply just as easily to these names as the word “disorder,” by the way.  A syndrome is simply a set of traits or characteristics that appear together.)

In the new 5th edition of the DSM, the APA plans to remove these five diagnoses as separate categories, replacing them with a single diagnosis:

  • Autistic Spectrum Disorder

Why is this?  Well, let’s take a closer look at how the DSM-IV defines the five categories:

1.  Autistic Disorder (or Autism)

In 1943, American psychiatrist Leo Kanner published a paper about children he had observed who showed significant delays in the development of communication and social skills expected for their ages and displayed repetitive behavior or seemingly strange fixations.  It seemed to Kanner as if these children were withdrawn into themselves, so he called the condition autism, using the Greek root for “self.”

While many symptoms and behaviors clearly go along with autism, the specific symptoms displayed and their severity vary greatly from person to person.  I’m going to quote myself from an earlier post, because I already wrote something about this:

Do you know anyone who is autistic?  People with autism vary greatly in the symptoms they show.  Some never speak their entire lives, some learn to communicate with the help of computer devices or cards, some speak a little, and some learn to speak just as well as anyone.

People with autism are often very sensitive to outside stimuli– sounds, lights, and touch sensations that others don’t even notice can be unbearable to an autistic person.  Children with autism may scream at the top of their lungs, hit themselves, bang against a wall, or sit and stare for hours, seemingly doing nothing.  Sometimes these sorts of behaviors lessen as a child grows up, and sometimes they don’t.  Some autistic people are able to take care of themselves, some just barely get by, and some can’t live on their own.

The DSM-IV defines autism using three major categories of criteria, and as two of these are the same categories it applies to Asperger’s syndrome, I’ll just point you to the posts where I looked at each of them in more detail:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behavior, interests, and activities.

It’s the second point above– impairment in communication– that is emphasized more in the DSM-IV’s criteria for diagnosing autism than in its criteria for Asperger’s.  The DSM-IV gives four different ways that “impairment in communication” can manifest itself:

  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.

(I think 2 and 3 may have been true of me at times when I was a young child.)

Another requirement the DSM-IV specifies for autism is that delayed development in any of these areas (social skills, language, symbolic play) must be observable from an early age (like 3 years).

Because of when it is diagnosed, autism is sometimes thought of as only affecting children.  Of course, children grow up and become adolescents, adults, middle-aged, and elderly, so there are autistic people of all ages.  This is another reason that it isn’t easy to define a few specific traits that apply to everyone who is autistic:  Every person has his or her own collection of experiences in life that is unique to them.

2.  Asperger’s Disorder (or Asperger’s syndrome)

In 1944, one year after Leo Kanner published his first study of autism in the United States, an Austrian psychiatrist and pediatrician named Hans Asperger wrote about some children he had observed in his practice.  These children displayed a level of intelligence and ability to use spoken language that was in line with what was “normal” for their ages.  However, they struggled in the use of nonverbal communication skills and social interaction with other children their own ages.  Their body language seemed forced or unnatural.  Their patterns of speech seemed disjointed or overly formal, and they would tend to focus on one specific topic, in which they became experts (or, in Hans Asperger’s words, “little professors.”)

Asperger’s work was mostly overlooked until 1981, when English psychiatrist Lorna Wing revisited it in a paper that coined the term Asperger’s syndrome and speculated about how it was related to autism.  (Asperger actually used the term autism to describe the children he wrote about, not knowing about Kanner’s use of the term just one year earlier.)

There are certainly a lot of similarities between the traits of autism and the traits of Asperger’s syndrome.  They both affect social skills and language skills, and they both involve focuses on very specific areas and repetitive or routine-driven behavior.  The main difference seems to be that the children Kanner observed had handicaps that severely limited their ability to communicate verbally at all, or to care for themselves, while Asperger’s “little professors” had a level of language skills that were normal for their age; they just seemed a bit odd in the way they used them.

Lorna Wing observed that the major difference between children with autism and those with Asperger’s syndrome seemed to be one of degree or severity rather than the two being totally separate conditions.  She suggested that autism could be seen as a spectrum disorder, meaning that its effects could fade smoothly from severe mental handicap to disorder to learning disability to extreme personality type to barely noticeable quirk, and an individual could be anywhere along this spectrum.  (See my post here for more thoughts about this.)

As noted above, the criteria for autism and for Asperger’s were very similar in the DSM-IV.  The only major difference has to do with whether a significant delay in the development of language skills is visible from an early age or not.

The terms high-functioning autism (HFA) and low-functioning autism (LFA) are a simplification of the “spectrum” idea.  Sometimes Asperger’s syndrome is considered to be another way to say “high-functioning autism.”

The problem is that this is still an oversimplification.  It implies that you could give each autistic person a test of one area, such as verbal language skills, and assign them a position on a scale from 1 to 10 according to “how autistic” they are.  People are just not that simple:

  • There is way more than just one “number line” involved here.
  • It’s possible to struggle with an area in one circumstance (being too nervous to speak casually in a group of five people) and be very strong in that same area in another circumstance (being able to deliver a speech eloquently to an audience of 5,000).
  • No one is “assigned” to a single point on the number line from which they never move.  Every person, autistic or not, is constantly changing, growing, and learning.  You can get better at a skill with practice and maturity.  And you can also get worse in some areas as you get older.
  • Everyone differs from day to day.  Some days I have the energy to speak up and talk to those around me, and some days I feel like hiding and being quiet.

Now, let’s briefly look at the other three diagnoses that the DSM-IV placed under the autism spectrum.  I won’t go into a lot of detail, because a lot of this is beyond the scope of my knowledge and experience.  (If I make errors in accuracy, let me know and I’ll try to correct them as best I can.)

3.  Childhood Disintegrative Disorder (CDD)

Childhood Disintegrative Disorder was first recognized by Austrian educator Thomas Heller in 1908— a few decades before autism was defined.  Like Asperger’s syndrome, CDD wasn’t officially recognized or linked to autism until fairly recently.

Based on my limited reading about it, the biggest thing that distinguishes Childhood Disintegrative Disorder from autism is the suddenness and severity with which it presents itself.  A child with CDD may be picking up skills like walking, talking and playing in a way that matches just what is expected at his or her age, but then very suddenly, he or she regresses, losing social, language, and even basic motor skills.  Many of the symptoms seem to be similar to the cases of autism that are the most disabling.  Thankfully, CDD is a very rare condition, but I cannot imagine how heartbreaking it must be to go through for a child and his or her family.

According to the APA, the diagnosis for Childhood Disintegrative Disorder was included in the DSM-IV partly in hope that more research could be done in that area.   Because it is so rare, there aren’t a lot of cases of CDD to compare scientifically to one another.  However, it seems that once again, there is not a clear dividing line between CDD and “classic” autism.  In some cases, it wasn’t clear how to tell if a loss in skills should be considered a “regression” or not.  If the loss of skills appears at a very young age like 2 or 3, it becomes difficult to tell which category to use.  In other cases, it seemed that the symptoms could also be explained as the combination of other mental issues along with autism, in which case the label could potentially be misleading.

4.  Rett’s Disorder (or syndrome)

Austrian pediatrician Andreas Rett first described this condition in 1966.  Rett’s syndrome is probably the most distinctly different of the five categories that the DSM-IV described as part of the autistic spectrum.

Children with Rett’s syndrome deal with both physical and mental handicaps.  Rett’s syndrome has been linked to mutations of a specific gene on the X chromosome.  One of the results of this is that boys with Rett’s rarely survive until birth.  Girls have an extra X chromosome with an unchanged copy of the gene, so they are able to survive, but Rett’s still makes them prone to gastrointestinal disorders and seizures, among other symptoms.

Rett’s syndrome was listed in the DSM-IV as an autism spectrum disorder because when the signs of it first become apparent in girls around 6-18 months old, it looks the same as, or very similar to, autism– enough so that a baby girl with Rett’s can often be diagnosed with autism according to its criteria.

However, Rett’s syndrome is a different different sort of diagnosis from autism, in that Rett’s has a known, specific genetic cause.  Autism is defined less directly, by behavior.  It’s possible to study a person’s genes and determine whether they have Rett’s, but that’s not possible to do with autism (at least not yet).  As a child grows, Rett’s also brings with it some symptoms that are different from those of autism.

The APA argues that it makes sense to see Rett’s disorder as a separate thing from autism.  A person with Rett’s can be on the autism spectrum as well (and often will be), but Rett’s is not a “sub-category” of autism.

5.  Pervasive Development Disorder – Not Otherwise Specified (PDD-NOS)

Honestly, I think this category could just as easily be called “Miscellaneous,” since it serves the function of filling in the “gaps” that aren’t covered by the other diagnosis categories on the autism spectrum.  If you remember how the DSM-IV criteria work in the diagnosis of Asperger’s, it was defined almost like a multiple-choice question.

For instance, the criteria gave four signs that indicate a “qualitative impairment in social interaction,” but not all of the signs have to fit a person for them to meet that criterion.  They have to meet at least two out of four of them.  For example, I think “failure to develop peer relationships appropriate to development” was true of me as a child, but “a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people” was not.

Autism (and Asperger’s) looks a little different in every autistic person, so it actually makes sense for the diagnosis to be flexible to account for that.  Of course, the decision to use two out of four rather than one or three was arbitrary to some degree.  What if you fit all of the criteria and you experience some common autistic characteristics that are overlooked in the DSM’s definition (like sensitivity to certain sensory inputs), but you aren’t sure if you can check off all of the points the DSM says are necessary for an autism diagnosis?   What if you fit most of the criteria for autism, but not all of the criteria for Asperger’s– and yet there isn’t a delay in language skills?

The “PDD-NOS” category is basically an acknowledgment that it’s possible to on the autistic spectrum even if it’s not clear what sub-category’s label applies best.  If you look back at the history of each of the other categories, it’s as if each one cast a spotlight on a specific sort of autism, and as more and more was learned, the spotlights widened to the point that they seemed to blend together.  There’s still a lot unknown, but it seems that the experts are leaning toward the idea that a “big-picture” view of autism is more helpful than a handful of “little pictures.”

Do you know anyone who is autistic?  People with autism vary greatly in the symptoms they show.  Some never speak their entire lives, some learn to communicate with the help of computer devices or cards, some speak a little, and some learn to speak just as well as anyone.

People with autism are often very sensitive to outside stimuli– sounds, lights, and touch sensations that others don’t even notice can be unbearable to an autistic person.  Children with autism may scream at the top of their lungs, hit themselves, bang against a wall, or sit and stare for hours, seemingly doing nothing.  Sometimes these sorts of behaviors lessen as a child grows up, and sometimes they don’t.  Some autistic people are able to take care of themselves, some just barely get by, and some can’t live on their own.

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