New Proposed DSM-5 May Narrow the Autism Spectrum in 2013

The American Psychiatric Association is in the process of revising the Diagnostic and Statistical Manual of Mental Disorders, or DSM. The 1994 DSM-IV that has been the basis for diagnosing individuals with autism spectrum disorders for nearly 20 years would be replaced by the new DSM-5. The Association will continue finalizing the DSM-5 criteria through the end of 2012, with release planned for 2013.

The proposed DSM-5 would collapse three disorders — autistic disorder, PDD-NOS and Asperger’s disorder — into one new category, autism spectrum disorder. Instead of evaluating individuals in three domains (social, communication, restricted and repetitive behaviors), clinicians would use two: social/communication deficits, and fixated interests and repetitive behaviors.

The criteria would include “severity levels” for individuals with autism spectrum disorders in the two domains: “requiring very substantial support”(3), “requiring substantial support”(2) or “requiring support” (1)

The manual would also create a new disorder known as “Social Communication Disorder” for individuals with pragmatic language impairments, but not restricted and repetitive behaviors. This disorder would not be part of the autism spectrum disorder.

FEAT and other organizations representing the interests of families and individuals with autism are concerned that the autism spectrum will be significantly narrowed under the proposed new criteria, leaving many of those who met criteria under the DSM-IV without a diagnosis when the new criteria are published. As many FEAT families are aware, a medical diagnosis based on the DSM is a critical tool for getting individuals with autism the education and support required by federal and state law. Changes that could strip many of this diagnosis, or prevent autistic children from being diagnosed, are tremendously concerning.

In January 2012, the issue received national attention when a reporter for the New York Times wrote about long-time autism expert Fred Volkmar’s concerns about the new criteria. Volkmar, head of the Yale Child Study Center, a premier institution for the study of autism spectrum disorders, indicated that his team’s own review of the proposed criteria could mean that many thousands of the more cognitively able individuals would not meet DSM-5 criteria for a diagnosis of autism spectrum disorder. Other research finds the same result — that a significant number of those now diagnosed — including those with Asperger’s, PDD-NOS and autism — would not meet the new DSM-5 criteria for autism spectrum disorder.

Leaders of the DSM-5 defended the new criteria and insist that they are making the criteria more precise. However, David Kupfer, leader of the committee re-writing the manual, told the New York Times in January that part of the reason for the change is because not everybody who’s “a little odd” should be diagnosed with an autism spectrum disorder, and that sooner or later, it has become a “cost issue.”

FEAT believes changes to the DSM should be based on outcome research, not the misguided belief that too many merely “odd” children are being improperly labeled or that they are using too many resources.

On June 15, 2012, FEAT submitted the following comments to the DSM committee.

On behalf of Families for Early Autism Treatment, we are writing to express our profound concerns about the proposed DSM-5 criteria for autism spectrum disorders.

FEAT a non-profit organization of parents, family members, and treatment professionals dedicated to providing best outcome Education, Advocacy and Support for the Northern California Autism Community.

In the nearly 20 years since we founded FEAT, we have provided support for thousands of individuals with autism spectrum disorders and their families, helping them access proven treatments that make a lifelong difference in functioning. We teach parents how to advocate for the services their children need, and work to give them the support they need to obtain research-based treatments.

As advocates, we are in the trenches every week with individuals and family members living with autism, working side-by-side with them to help them obtain the services and supports required by federal and state law.

In many cases involving individuals with high-functioning autism, we encounter school experts who say, in effect, “we just don’t see it.” In those cases, the only thing that ensures that an autistic child gets the legally mandated help he needs is a DSM-IV medical diagnosis of an autism spectrum disorder.

As you continue to consider the fifth edition of the DSM, we hope you will consider several points, informed by our direct work with Northern California families, communities and school districts in the last two decades.

The path to an autism diagnosis is long and hard:

We were shocked and disheartened to read that Dr. David Kupfer, chair of the DSM-5 committee, believes that too many merely “odd” children are being incorrectly diagnosed with autism spectrum disorders, as he indicated in the New York Times in January 2012.

We are aware of no body of research showing that any significant number of odd individuals has been improperly labeled autistic. Nor is it within our experience in our nearly two decades of advocacy to come across a child or adult whose diagnosis was given too freely.

Parents seek help because their children are failing, desperately. They are being kicked out of preschools because they are aggressive, completely disengaged or unable to follow teachers’ instructions. They have tantrums — sometimes dozens a day — that are not resolved by skillful parenting. Many children are still unable to communicate with language at the age of 4 or 5; others are so sensitive to sounds, smells or touch that their parents can rarely take them into the community. Families are frightened by the challenges of raising these extremely difficult young children, and they have no idea what is wrong.

Yet, months or even years go by before a correct diagnosis is made. Pediatricians sometimes reassure parents, inappropriately, that everything is fine. Children wait on lists for months because there are not enough specialists with the advanced training needed to diagnose autism. Others are not flagged for evaluation at all. Far from “over-diagnosis,” the problem we see is that too many autistic children are still being missed.

Individuals with mild autism are not just “a little odd”:

In our experience, individuals with high-functioning autism, including PDD-NOS and Asperger’s disorder, have significant impairments that extend beyond the social realm. In childhood, they must be taught with visual schedules, token reinforcements and other complex teaching techniques to impart basic information.

In adulthood, many function on par with individuals with mental retardation, and in some cases, slightly worse even in the presence of a high IQ. They are not just “a little odd,” as Dr. Kupfer suggested in the Times article, they struggle with profound problems communicating and making sense of the world.

The suggestion that they are merely a little different, or that they use resources they do not need, reflects a total disconnection with the daily lives and struggles of individuals with these disorders.

Changing the DSM in ways that would re-characterize mildly autistic adults as merely quirky or odd, or classifying them as having a so-called “social communication disorder,” would do a tremendous disservice to thousands of children and adults with these disabling conditions, and it would represent a giant step backward for individuals on the autism spectrum.

Research supports early intensive intervention for all individuals on the autism spectrum:

Studies show that early intervention improves outcomes and lowers the cost of care for autistic adults, which is why the National Research Council recommends help for “children with any autistic spectrum disorder (autistic disorder, Asperger’s disorder, atypical autism, PDD-NOS (pervasive developmental disorder-not otherwise specified), childhood disintegrative disorder), regardless of level of severity or function….”

Changing the DSM-5 as proposed runs counter to these recommendations, effectively telling the clinical world and the community of service providers that many of the kids who have been thought of as mildly autistic do not need help after all. Is this what the APA intends? Does the APA believe, in contrast to the National Research Council, that individuals with these disorders need help only if very severely affected? What is the basis for this position?

Concern about treatment resources should not be a factor in the definition of autism spectrum disorders:

While leaders of your organization insist they are narrowing the spectrum to make it more precise, Dr. Kupfer told the New York Times that the definition needs to change because “it involves a use of treatment resources. It becomes a cost issue.”

This seems to us a striking admission from the leader of a group of professionals responsible for defining the precise symptoms of these disorders for thousands of clinicians in the U.S. and around the globe.

No one would propose rewriting the medical definition of diabetes because too many Americans now need insulin. Why are leaders of the APA feeling pressure to reduce costs?

It is troubling to all of us that the number of individuals diagnosed with autism spectrum disorders is growing. But it is irresponsible and inappropriate for a group charged with defining these orders to consider resource issues at all in developing new criteria for the disorders.

Why make it harder?

Even when autistic children do receive an appropriate autism diagnosis in early childhood, getting help from under-resourced schools and community providers requires Herculean efforts.

Schools often badly underestimate the needs of autistic children and provide a fraction of the help they need to succeed, especially when they present no obvious behavior problems. Many school districts have barely begun to understand autism spectrum disorders, let alone train their staff and develop the programs and services autistic children need.

Narrowing the spectrum at this critical point — when many families are only just beginning to see some success getting their young children diagnosed early — would represent a devastating setback.

The time is now for leaders of the APA to rethink the proposed criteria to make sure it captures those already diagnosed. Don’t redefine the disorder based on an unfounded assumption that too many “odd” individuals are being diagnosed, or because the number of those diagnosed is becoming too expensive to serve.

The day-to-day demands of caring for an autistic loved — including high-functioning children — can be exhausting and overwhelming, and the advocacy required on the part of families to get the complex, intensive help they need only adds to the distress.

Please use your diagnostic insight and expertise as a force for good and call out autism spectrum disorders for what they are — lifelong impairments that require intensive early intervention and, for virtually all individuals we know, some measure of support throughout their lives.

Taking away an autism spectrum disorder diagnosis for thousands of more mildly affected children in the years ahead will take away the most powerful tool a family has for getting the help their child is entitled to under the law. We urge you to reconsider the proposed changes and make sure that individuals affected by the debilitating features of autism continue to get the help they need.

Nancy Fellmeth
President
Families for Early Autism Treatment

FEAT is a non-profit organization of parents, family members, and treatment professionals dedicated to providing best outcome Education, Advocacy and Support for the Northern California Autism Community, www.feat.org.


TAKE ACTION:

Anyone who has had to fight hard to get help for a loved one with an autistic disorder knows that a diagnosis is the key to getting the intervention and support from schools, insurance companies, regional centers and communities. Taking away that diagnosis, or preventing young children from obtaining an appropriate diagnosis, will in most cases end any hope of meaningful treatment.

Here’s what to do:

  • Learn more about the upcoming edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) by visiting it http://www.dsm5.org. Read the press release “DSM-5 Proposed Criteria for Autism Spectrum Disorder Designed to Provide More Accurate Diagnosis and Treatment” to understand the APA’s position on new autism criteria.

 

 

 

  • Stay tuned for new information if/when new revisions to the criteria are made, as there may be more opportunities to give feedback to the APA.

FEAT will continue follow the APA’s work on the DSM-5. The APA is scheduled to release the new DSM-5 in May 2013 at its annual conference in San Francisco.

Jimmy Kilpatrick, a national recognized professional special education advocate since 1994.

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