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CT FEAT: Families Helping
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What's
in a Name? The
Disorderly World of PDD Labels
By Richard Irwin and B.C.
(Members of CTFEAT)
“Autistic Disorder.” “PDD.” “Asperger’s
Syndrome.” “Infantile Autism.” These are just a few of the many labels
commonly seen and sometimes misused in the world of autism and its
related developmental disorders. Some of these labels are actual
diagnostic labels, while others are “unofficial” or “popular” terms with
less precise definitions.
As a parent, this myriad of labels can cause a great deal of confusion.
Do labels such as “autism,” “infantile autism” and “autistic disorder”
refer to the same disorder? Are there nuances that differentiate one
disorder from another? How does a label of Pervasive Developmental
Disorder Not Otherwise Specified (PDD-NOS) relate to autism? Should the
treatment and education of a child with a diagnosis of PDD-NOS be any
different from that of a child diagnosed with autistic disorder?
The common practice of ranking children as "mildly," "moderately" or
"severely" autistic is also confusing. Does the severity have
implications for treatments and outcomes? These are the type of
questions that need to be answered in your quest for information and
help for your child.
Diagnostic Categories. Though it can make for somewhat intimidating
reading, the essential place to start untangling this web of labels and
terms is in the fourth edition of the American Psychiatric Association's
Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; 1994).
Qualified diagnosticians use the DSM-IV guidelines when diagnosing
children. The DSM-IV describes a class of disorders, called "Pervasive
Developmental Disorders" (PDD), under which there are five diagnostic
categories:
Autistic Disorder
Asperger’s Disorder
Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)
Childhood Disintegrative Disorder
Rett’s Syndrome
Note that there is no such thing as a singular diagnosis of "PDD." This
has been a source of great confusion, as the label PDD is regularly
discussed and applied to children. But, in fact, PDD is simply the
umbrella under which the five disorders listed above fall.
A Better Way of Thinking. It is helpful to understand the relationship
of the five disorders to one another. In a 1997 report sponsored by the
California Departments of Education and Developmental Services, which
looked at best practices in the field of autism, the authors used the
term “autistic spectrum disorders” (also referred to as "autism spectrum
disorders or "ASD") to refer to the five disorders classified in DSM-IV:
“The term ”spectrum,” used in the context of ASD, suggests a range of
related qualities or activities.... Autistic spectrum disorders implies
a class of related developmental disorders that overlap but are
clinically distinct and separately diagnosed. These disorders overlap in
the sense that a portion of their clinical features are shared.... The
assumption is that with careful assessment the PDDs can be
differentially diagnosed.” (from Best Practices for Designing and
Delivering Effective Programs for Individuals with Autistic Spectrum
Disorders, page 17)
The term ASD makes it clear that the five Pervasive Developmental
Disorders share important similarities, despite some differences in the
areas affected (e.g., language, cognitive, etc.) or the relative degree
of impairment (e.g. mild to severe). For instance, one important “common
denominator” among the PDDs is the presence of a significant disturbance
in the child’s ability to relate to others. This disturbance, which may
be present in varying levels of severity, has important implications for
the child’s ability to learn from the environment.
DIAGNOSTIC CRITERIA. The following are the diagnostic criteria
for Autistic Disorder, Asperger’s Disorder and Pervasive Developmental
Disorder, Not Otherwise Specified (PDD-NOS), as taken from the DSM-IV.
Both Rett’s Syndrome and Childhood Disintegrative Disorder are very rare
and will not be discussed here. The diagnostic criteria provide a
roadmap to understanding the similarities and differences among these
three ASDs.
Autistic Disorder. Autistic Disorder has been referred to simply as
“autism,” “classical autism,” “infantile autism” and “Kanner’s autism.”
All are one in the same. There are no formal diagnostic categories for
the popular terms “mild,” “moderate,” and “severe” autism. Rather, these
terms probably have their origins in a widely used diagnostic assessment
tool called the Childhood Autism Rating Scale (CARS) that does divide
children into the two categories “mild-to-moderate” and “severe.” Many
children who are initially categorized as being “severely” affected by
autism, become only “mildly” so after appropriate treatment.
There is also no diagnostic category, and no commonly accepted
definition, for the label “high functioning” autism. It is sometimes
associated with those children who rank in the “mild-to-moderate” range
on the CARS test, or who have autism unaccompanied by mental
retardation. This vague "high functioning" label draws its meaning,
presumably, by being contrasted with the label “low functioning." Like
"high functioning autism," "low functioning autismi" has no concrete
definition. The term is offensive to many parents since it can be very
damaging to the children labeled with it. That's because "low
functioning" too often connotes “low expectations," which can become a
self-fulfilling prophecy when children are denied effective treatment
based on “low expectations." Unfortunately, even the Autism Society of
America contributes to this confusion regarding “high vs. low
functioning" by using these terms in their information materials.
The following are the diagnostic criteria for Autistic Disorder:
A. A total of six (or more) items from sections 1, 2, and 3, with at
least two from section 1, and one each from sections 2 and 3:
1) Qualitative impairment in social interaction, as manifested by at
least two of the following:
a) Marked impairment in the use of multiple, nonverbal behaviors, such
as eye-to-eye gaze, facial expression, body postures, 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, interests, or
achievements with other people (e.g., by a lack of showing, bringing, or
pointing out objects of interest);
d) Lack of social or emotional reciprocity.
2) Qualitative impairments in communication as manifested by at least
one of the following:
a) Delay in, or total lack of, development of spoken language (not
accompanied by an attempt to compensate through alternative modes of
communication, such as gesture or mime);
b) In individuals with adequate speech, marked impairment in the ability
to initiate or sustain a conversation with others;
c) Stereotyped and repetitive use of language or idiosyncratic language;
d) Lack of varied, spontaneous make-believe play or social imitative
play appropriate to developmental level.
3) Restricted repetitive and 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, twisting, or complex whole-body movements);
d) Persistent preoccupation with parts of objects.
B. Delays or abnormal functioning in at least one of the following
areas, onset prior to age three years:
1) Social interaction;
2) Language as used in social communication;
3) Symbolic or imaginative play
C. The disturbance is not better accounted for by Rett’s Disorder or
Childhood Disintegrative Disorder. If the criteria for Autistic Disorder
are not met and the child has autistic features, the PDD-NOS diagnostic
label can be used.
Asperger’s Disorder. Asperger’s Disorder is also often referred to as
Asperger’s Syndrome. Children with Asperger’s Disorder are sometimes
mislabeled as having “high functioning” autism, because their language
and cognitive skills are generally better than children with Autistic
Disorder. This exemplifies the problem with the very imprecise term
“high functioning autism,” since it is often used to describe
individuals from two entirely separate diagnostic categories.
According to the Handbook of Autism and Pervasive Developmental
Disorders (Edited by Donald J. Cohen and Fred R. Volkmar, 1997, p. 113),
Asperger's Disorder differs from Autistic Disorder and PDD-NOS in that
"the onset is usually later and the outcome is more positive. In
addition, social and communication deficits are less severe, motor
mannerisms are usually absent, and circumscribed interest is more
conspicuous. Motor 'clumsiness' is more frequently seen…and family
history of similar problems is more frequently ascertained…" The
following are the diagnostic criteria for Asperger’s Disorder:
A. Qualitative impairment in social interaction, as manifested by at
least two of the following:
1) marked impairment in the use of multiple nonverbal behaviors such as
eye-to-eye gaze, facial expression, body postures, and gestures to
regulate social interaction;
2) failure to develop peer relationships appropriate to developmental
level;
3) 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) a lack of social or emotional reciprocity.
B. Restricted repetitive and stereotyped patterns of behavior,
interests, and activities, as manifested by at least one 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, non-functional 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
C. The disturbance causes clinically significant impairment in social,
occupational, or other important areas of functioning.
D. 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)
E. 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.
F. Criteria are not met for another specific Pervasive Developmental
Disorder or Schizophrenia.
Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS).
PDD-NOS is often incorrectly referred to as simply “PDD” and sometimes
as “atypical” autism. In some respects, PDD-NOS is a "default"
diagnosis, to be applied where a child fails to meet full diagnostic
criteria for one of the other pervasive developmental disorders.
According to the Handbook of Autism and Pervasive Developmental
Disorders (cited above,. page 128) it can be difficult to reliably
distinguish PDD-NOS from autistic disorder or Asperger's Disorder .
"Current criteria offer little direction or guidance for separating
PDD-NOS from Asperger's syndrome…determining whether an individual has
autism or PDD-NOS can be most perplexing…The absence of measurable
standards and of specific cut points that define the levels of
impairment within domains is particularly problematic."
The following are the diagnostic criteria for PDD-NOS:
This category should be used when there is a severe and pervasive
impairment in the development of reciprocal social interaction or verbal
and nonverbal communication skills, or when stereotyped behavior,
interests, and activities are present. The criteria are not met for a
specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal
Personality Disorder, or Avoidant Personality Disorder. For example,
this category includes “atypical autism” – presentations that do not
meet the criteria for Autistic Disorder because of late age at onset,
atypical symptomatology, subthreshold symptomatology, or all of these.
Treatment for Children with an ASD. There is only one treatment program
scientifically proven to be effective for children with the Autistic
Spectrum Disorders described here: an intensive intervention program
based on the principles of Applied Behavior Analysis (ABA). As Doctors
Sandra Harris and Mary Jane Weiss state in their 1998 book Right From
the Start: Behavioral Intervention for Young Children With Autism,
“Precise diagnosis of very young children is sometimes difficult, and
for the purpose of this book it does not matter if your child is labeled
as having autistic disorder, Asperger’s disorder, childhood
disintegrative disorder or atypical autism (PDD-NOS). Although the
long-term prognosis for children in these four groups may be somewhat
different, their early treatment is similar.”
COMMON MISCONCEPTIONS. Widespread acceptance of intensive ABA programs
as the treatment of choice for children with ASDs has been slow to
happen for a variety of reasons. Among these are: confusion over the
various labels and their implications for treatment; misconceptions
about what intensive ABA treatment programs entail; long-standing
allegiances to less effective treatments; and the comparatively greater
expense involved in providing intensive ABA treatment. The following are
a series of frequently held misconceptions surrounding the various
labels in the world of autism and their implications for treatment.
"My child has PDD, not autism, so an ABA program isn’t appropriate." The
same argument is commonly made if a child has been labeled as “mildly”
autistic or “high functioning.” Interestingly, one encounters this view
almost as frequently as its opposite “ ABA programs are only for the
most severely impaired.” A more balanced interpretation of the research
indicates that intensive ABA programs help most children with autism
spectrum disorders make the most progress towards reaching their
potential - regardless of how “high” or “low” functioning they may be,
or where they may fall on the autism spectrum.
The landmark study on the effectiveness of intensive behavioral
intervention was performed by Dr. O. Ivar Lovaas of UCLA (Lovaas, O.I.
(1987) "Behavioral treatment and normal educational and intellectual
functioning in young autistic children," Journal of Consulting and
Clinical Psychology, 55, 3-9). It is true that the study was performed
on children with autistic disorders, but subsequent data has been
gathered on children with PDD-NOS and Asperger’s Disorder. A recent book
on preschool programs for children with autism (Preschool Programs for
Children with Autism,” Sandra L. Harris and Jan S. Handleman eds.,
Pro-Ed, 1994), listed intake and outcome data for several preschool
programs based on intensive behavioral intervention. It showed that
these preschool ABA programs successfully treated children with Autistic
Disorder, PDD-NOS and Asperger’s Disorder.
The New York State Department of Health Early Intervention Program
recently released a report recommending intensive behavioral
intervention as the most effective treatment for children with "autism,"
which was defined broadly to include "the entire range of pervasive
developmental disorders as seen in young children." ( Clinical Practice
Guideline: Autism/Pervasive Developmental Disorders, p. I-5, 1999).
"My child is too advanced for discrete trial training." This is a really
close relative of the “high-functioning” argument. Unfortunately, many
uninformed people think of an ABA program as consisting only of discrete
trial training and that ABA is not effective for teaching advanced
skills such as social skills and the pragmatics of language. In fact,
ABA is really more of a systematic approach to teaching, rather than one
specific method. Discrete trial teaching is used very early on as an
effective method of teaching certain fundamental skills. However, it is
only one part of an ABA program. Quality ABA programs seek to teach all
the skills a typical child acquires naturally, including the most
sophisticated social, play and language skills.
It is helpful to remember that in the research study performed by Lovaas
and his colleagues ("Long-term outcome for children with autism who
received early intensive behavioral treatment," American Journal on
Mental Retardation, 1993, Vol.97, No. 4, 359-372) a large number of the
children (nine out of nineteen) achieved what was termed “normal
functioning” status. This meant they were indistinguishable from their
typical peers in every way. These children learned all the skills they
needed to achieve this status in their intensive ABA programs.
"Autism is a spectrum disorder and every child is different." This
correct observation is usually invoked to support an “eclectic”
treatment program. An eclectic program usually consists of a mix of
interventions, such as speech/language training, school inclusion,
sensory integration, special education, special diets, etc. Advocates of
this "eclecticism" often imply that a program based on ABA is a rigid,
one-size-fits-all approach.
It is true that within the broad autism spectrum, every child is
different. It is also true that ABA programs are extremely
individualized. A great deal of data is taken on each child’s strengths
and weaknesses, and likes and dislikes, so that the program can be
specifically tailored to the child's learning style. It is not unusual
to observe two children learning the same basic skill in very different
ways. There also is a great emphasis put on parental participation and
parents typically play a major role in every aspect of the intervention
program.
In conclusion, the labels that are attached to our children are often a
source of confusion and consternation. But there is hope. Other parents
have waded through this experience and are willing to help. The families
of CT FEAT are an excellent source of information. If you would like to
learn from their experiences, please feel free to contact CT FEAT by
phone at 860-571-3888 or by E-mail at
info@ctfeat.org.
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