DSM 5: A view from the trenches by Robert Naseef,
Ph.D.
A New York Times
article on January 19 entitled “New Definition of Autism May Exclude Many” has
started a panic in the autism community about the changes in the definition of
autism scheduled for release in the DSM 5.
Are our children in danger of losing services? Can we hurry science? Is anything really
changing? These questions and more are perplexing the autism community and
professionals as well. I write from the
perspective of a practicing psychologist and as the parent of an adult child
with autism.
Let's not lose sight of the bigger
picture. The struggle to get and keep good services for a child diagnosed with
autism has been the story of my life with my son for over 30 years. Anyone who
cannot afford to pay for the services themselves has faced and continues to
face the same uphill battle. I doubt that this will change in either direction with
the new criteria.
Debates
between experts are not new in autism but can be disturbing to families who are
caught in the middle and don’t know what to believe. The firestorm we are
witnessing is based upon an unpublished study founded upon questionable data that
has not been reviewed by other scientists.
Psychiatrist Fred Volkmar from the Child Study Center at the Yale School
of Medicine stepped down from the DSM committee, presented this data to the
Icelandic Medical Association and then participated in the NY Times
article. It looks like Dr. Volkmar
decided to take his issues with the DSM 5 autism criteria to the court of
public opinion.
Based
on this study, the New York Times reported that “about a quarter of those identified with classic autism in 1993 would
not be so identified under the proposed criteria; about three-quarters of those
with Asperger syndrome would not qualify; and 85 percent of those with
P.D.D.-N.O.S. would not.” No wonder that
people are scared. Access to services
for all affected by the symptoms of autism is vital and any threat to this is
terrifying. But we don’t really have evidence that this is what will happen
with the DSM changes. DSM 5 field
trials are underway, and Autism Speaks and the Autism Society advocate for an
in-depth assessment of the impact of the DSM 5 changes upon those currently receiving
services.
Every time I think I have my mind wrapped around the
controversy, I read something else and become re-confused—at least
temporarily. Many colleagues who are
mental health professionals are having the same reaction to DSM 5 changes in
general, not just the autism criteria. Change that can impact your family
can be difficult, let alone when researchers and well known doctors are arguing
on public forums. If well-read
professionals feel confused and concerned how are parents and others supposed
to feel?
In reviewing the children and adults diagnosed
with autism in our psychology practice over the past 20 years, I have not come
across anyone who would lose the autism diagnosis. On the contrary, we
have served many families whose children were misdiagnosed and undiagnosed
several times before finally being correctly diagnosed with autism. In recent years, because of the increased
awareness of the symptoms of autism, we have also ruled out autism when it was
suspected and not confirmed upon careful evaluation.
We
have also observed for several years, that the autism diagnosis by itself does
not lead to the level of services experts recommend. A two year old child just
diagnosed with autism, for example, in most parts of the United States gets
only a few hours of home based services per week, while experts recommend 25
hours of programming per week. Despite the increasing ability to diagnose
autism spectrum disorders accurately in very young children, the actual
practice lags behind. Parents and
professionals know all too well that the lack of or removal of services has
been an ongoing threat. Parents have had
to argue the challenges faced by their child and their symptoms in order to get
what their child needs regardless of the autism label. Many schools are poorly
funded, especially in the inner cities and rural areas. Staff is often inadequately trained, and
there are too few opportunities for developing social skills by including
children with autism with their same aged peers. Even in relatively better funded school
districts, services are often cut back especially when children make progress.
From
my perspective, it is preposterous to say that over-diagnosis of autism is a
major problem. That position is in
denial of the everyday life of families who love and care for children with the
symptoms of autism. Scientifically, we
do not know how many currently diagnosed children and adults will no longer
meet the new criteria. The issue hinges
upon how professionals will interpret the new definition. That problem is nothing new. DSM 4 and DSM 3 had the same problem.
There
is no doubt that there will be change. In
closely reviewing the new criteria, I think that DSM 5 brings clarity in
describing what we have been calling the autism spectrum by officially
recognizing the wide range or continuum of how autism impacts an individual. There are other related issues which I am not
addressing in this commentary. For
example, eliminating Asperger’s syndrome as a category is a serious problem for
those who have lived and created a sense of community and identity with this
label. Whether the DSM 5 changes related
to autism will be for the better or for the worse depends upon how families,
people with autism, and professionals handle them.
