PDD NOS and what it (doesn't) mean by Dr. Rimland

[Guest guest]

I believe it was someone who didn't get a diagnosis of apraxia but was given PDD

NOS instead? (the archives for recent don't work here so can't remember) You

want a diagnosis that is going to help your child receive appropriate therapy

and placement...so what is the appropriate therapy and placement for PDD NOS???

And 'is' the child speech impaired because autism isn't about not talking due to

an impairment even though that frequently co exists. If I were you I'd seek a

second opinion ASAP to find out if your child really is autistic -or apraxic or

a combination of the two or something else.

If an SLP believes your child apraxic and the only diagnosis the neuroMD gave

your child is PDD or PDD NOS you may want to be aware that " There is no such

thing as PDD. Your child may be autistic, or have a condition like autism, or

many characteristics of autism, but he doesn't have PDD because there is no such

thing. PDD is a label concocted by psychiatrists to cover up the fact that they

don't know what your child does have....Clearly, the PDD designation, along with

its cumbersome bureaucratic baggage (i.e., PDD-NOS: " Not Otherwise Specified " )

should be relegated to the Archives of Failed Attempts, where it will have

plenty of company, while we go on about our business. "

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Written by Bernard Rimland, Ph.D. Autism Research Institute

Autism Research Review International, 1993, Vol. 7, No. 2,

Plain Talk about PDD and the Diagnosis of Autism

Let's start with the obvious: the label PDD (Pervasive Developmental Disorder)

is a poorly understood, uninformative, confusing, disliked, and should be

abandoned. The sooner the better. In fact, it should never have been adopted in

the first place.

Over the years I have talked and corresponded with thousands of parents who have

told me their child " has PDD. " I often respond by saying something like, " Your

child doesn't have PDD. There is no such thing as PDD. Your child may be

autistic, or have a condition like autism, or many characteristics of autism,

but he doesn't have PDD because there is no such thing. PDD is a label concocted

by psychiatrists to cover up the fact that they don't know what your child does

have. "

If any parents have been distressed by this blunt, unexpected harangue on my

part, I would be surprised. The vast majority seem relieved to at last hear

someone giving them straight talk about PDD. Parents live with their child 24

hours a day, 7 days a week. These parents realize that their handicapped child

will in all likelihood be the central focus of their lives for the rest of their

lives. They want to know the truth, insofar as the truth is known. They don't

want to be misled or misinformed by sugar-coated verbiage masquerading as

informed fact. If we don't know the right label for their child, let's tell them

that up front, rather than hide our ignorance behind the mystique of a

pseudo-scientific label, presuming knowledge we don't have, like PDD.

I am very much aware that creating suitable names for " psychiatric " or

" behavioral " disorders is a difficult and thankless task. Look at what we have

now: Schizophrenia is Greek for " split mind. " Mental retardation is a euphemism

for low intelligence. Hyperactivity merely describes what everyone knows too

well--the person is too active. Autistic means " day dreaming. "

Until we know what causes these things we are stuck with using a somewhat

descriptive term to characterize them. I'll agree to that, as a matter of

necessity, but where does PDD come in?

The passage of time has led to widespread usage of the terms, schizophrenia,

mental retardation and autism. There is little or no likelihood that PDD will be

afforded similar acceptance.

In the Autism Research Review International (ARRI) (1991, Vol. 5, No. 2), we

summarized an excellent statement, signed by 16 prominent European and U.S.

professionals in the field of autism, titled " Autism is not necessarily a

pervasive developmental disorder. " The authors noted that although the term PDD

was introduced well over a decade ago, it has not really caught on, and is

unfamiliar not only to lay people, but to the politicians and administrators,

most of whom--thanks probably to Rain Man--are aware of autism. The article

observes that the term " pervasive " is particularly inappropriate, since severely

retarded persons, many of whom have chromosomal defects which affect every cell

in their bodies. Autism, they point out, rather than being a pervasive disorder,

is in fact a specific one, characterized by deficits in social and cognitive

functioning.

Quite apart from the misleading and inappropriate semantics of the term PDD is a

practical matter: autistic children and adults unfortunate enough to have the

PDD affixed to them have often been--and continue to be--excluded from programs

and services designated for those with autism, and which would benefit them.

Clearly, the PDD designation, along with its cumbersome bureaucratic baggage

(i.e., PDD-NOS: " Not Otherwise Specified " ) should be relegated to the Archives

of Failed Attempts, where it will have plenty of company, while we go on about

our business.

There are many more children with autistic-like disorders than there are

children with autism itself. When I founded the Autism Society of America in

1965, I urged, and my recommendation was followed for many years, that all ASA

stationery, brochures, and other printed materials carry the wording " Dedicated

to the welfare of all children (later 'children and adults') with severe

disorders of communication and behavior. " The need for an encompassing title for

this group was evident even then.

Of the various labels that have been suggested, the one I like best is " autistic

spectrum disorder, " which, I believe, was first suggested by Wing and Gould in

1979. The advantages of this term are obvious. For one, it acknowledges that

there is a range of problems and of subtypes, and it does not pretentiously

claim to be based on knowledge that is not yet available to us.

At the Autism Research Institute we have been working for over a quarter of a

century on the development of more objective scientific means of diagnosing

children with autism and related disorders.

When my book Infantile Autism was published in 1964, it contained, as an

appendix, a checklist designated " Form E-1 " (E for experimental). Within a year

E-1 was replaced by the Form E-2. As of June 1993, the Autism Research Institute

has collected over 16,800 E-2 forms, completed by parents of autistic and

possibly-autistic children in over 50 countries. (Form E-2 is available in eight

languages.)

Form E-2 is designed for completion by the child's parents, and asks questions

about the child's early development and about language and behavior through age

five an a half. (After age five an a half, autistic children begin to change in

many ways, so it is better to rely on behavior prior to that age.) Once we

receive a completed E-2 form from a parent or professional, we enter the data

into our computer, derive a score which tells the child's position to the

continuum ranging from " classical autistic " at one end to " not autistic " on the

other, and mail a report to the sender. We have performed this service, free of

charge, for well over a quarter of a century for thousands of parents and

professionals world-wide. (Readers of the ARRI are invited to request E-2 forms

and avail themselves of this free service.)

A major purpose of this effort is to collect data for statistical analysis.

There is no doubt that the " spectrum of autistic disorders " contains numerous

subtypes, some of which are large enough to be identified by as our database of

almost 17,000 E-2 Forms. We are already aware of some of these types, such as

classical--Kanner's Syndrome--autism, fragile X autism, Rett syndrome, and

candida-caused autism. My colleague, Dr. Edelson and I are conducting

factor analyses and cluster analyses of the E-2 database, in order to identify

and characterize these and other subtypes. The database is large enough so that

subtypes identified by cluster analysis within one segment of the database can

be confirmed by cross-validation on E-2 data which was not used in the original

identification of subtypes.

As this work advances we will report on progress in the ARRI, and in other

places. Subtypes identified through this means of statistical analysis can be

validated in a number of ways, independent of the E-2 database, including family

history variables, clinical laboratory tests, and differential responses to

drugs and other treatments. It is thus hoped to place the diagnosis--as well as

the treatment--of " autistic " children and adults on a more scientific basis. I

believe that progress in this field will proceed faster if we rely on the

identification of subgroups through the analysis of statistical data, rather

than on constructs based on speculation, conjecture, surmise and subjective

impressions.

In the meantime, let's get rid of " PDD! "

This article appeared in the Autism Research Review International, Vol. 7 (2),

1993. The Autism Research Review International is a quarterly newsletter

published by the Autism Research Institute (4182 Avenue, San Diego, CA

92116, U.S.A.).

http://www.marshall.edu/wvasdr/old_site/plain_ta.pdf

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