A Different Approach to Autism Diagnosis

Breaking news that will affect how families are able to obtain services for their children.

Our guest blogger this week is National Philoptochos Society Autism Committee Member Barbara A. Orlando, who will explain the new developments on how Autism will be dealt with as of May 18, 2013:

On May 18, 2013, The American Psychiatric Association released the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders or (DSM-1V). This manual serves as the official “Guide book” for clinicians, insurance companies and others. This new edition brings significant changes to the way Autism is diagnosed. For example, the term “Autism Spectrum Disorder” will now be used instead of the previous Autism, Asperger’s Syndrome-(A very high functioning form of autism) and PDDNOS-Pervasive Developmental Disorder Not Otherwise Described.

Diagnosticians are also expected to note the level of support and individual needs as a result of their diagnosis. These DSM 1V changes may temporarily and even permanently affect insurance billing and impact access to services for those diagnosed with Autism Spectrum Disorder. 

These changes will weigh heavy upon families of Autistic children and adults. They will now be faced with defending their child’s need for treatment that has already been an upward battle.
Some will have to seek possible re-diagnosis, visits to their pediatric neurologist and lengthy meetings with educators. We need to continue to lend our support and prayers to Autism. 

 -Barbara A. Orlando

Experts at Autism Speaks have put together answers to frequently asked questions to help better explain what the DSM-5 changes mean and how they might affect your loved one's diagnosis and access to services.

What is the DSM-5?
Published by the American Psychiatric Association (APA), the Diagnostic and Statistical Manual of Mental Disorders (DSM) is used to diagnose mental and behavioral conditions.  The fifth edition, the DSM-5, will be released on May 18, 2013 and announced at the annual meeting of the APA.

Why did it change from the previous version?

The DSM is a living document that has changed several times over the last few decades to reflect new research and ongoing psychiatric practice. The criteria were changed to improve the accuracy of the diagnoses and to allow clinicians the ability to describe specific symptoms seen in individuals. 

Who revised the DSM definition of autism spectrum disorder (ASD) and why?
The members of the APA’s Neurodevelopmental Disorders Work Group. Their names and affiliations can be found here. The American Psychiatric Association assembled this committee of experts to consider revisions to the current definitions of autism and related neurodevelopmental disorders that reflect advances in research since the DSM-IV criteria were created. The committee solicited and integrated input from the community, including families and people on the spectrum, scientists and clinicians, and advocacy organization, including Autism Speaks. The goal was to overcome inconsistencies and improve reliability in how ASD is diagnosed.

What changes to the diagnosis of autism spectrum disorder did the APA approve?
The five major changes are:
1.    The new classification system eliminates the previously separate subcategories on the autism spectrum, including Asperger syndrome, PDD-NOS, childhood disintegrative disorder and autistic disorder. These subcategories will be folded into the broad term autism spectrum disorder (ASD).
2.    Instead of three domains of autism symptoms (social impairment, language/communication impairment and repetitive/restricted behaviors), two categories will be used: social communication impairment and restricted interests/repetitive behaviors. Under the DSM-IV, a person qualified for an ASD diagnosis by exhibiting at least six of twelve deficits in social interaction, communication or repetitive behaviors. Under the DSM-5, diagnosis will require a person to exhibit three deficits in social communication and at least two symptoms in the category of restricted range of activities/repetitive behaviors. Within the second category, a new symptom will be included: hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment.
3.    Symptoms can currently be present, or reported in past history.
4.    In addition to the diagnosis, each person evaluated will also be described in terms of any known genetic cause (e.g. fragile X syndrome, Rett syndrome), level of language and intellectual disability and presence of medical conditions such as seizures, anxiety, depression, and/or gastrointestinal (GI) problems.
5.    The work group added a new category called Social Communication Disorder (SCD). This will allow for a diagnosis of disabilities in social communication without the presence of repetitive behavior.

How will these changes affect my (or my child’s) diagnosis, treatment and support services?

First, all individuals who currently have a diagnosis on the autism spectrum, including those with Asperger syndrome or PDD-NOS, will not lose their ASD diagnosis. In other words, if you have a diagnosis for ASD, you have a diagnosis of ASD for your life and should be entitled to appropriate interventions for the rest of your life. Need for individualized services may change, and you or your child may need different levels of support or different interventions as you or your child age.
No one should be reevaluated or “lose” their diagnosis because of administrative reasons of the DSM-5.
Second, the revisions are intended to more reliably capture all those who would have legitimately received a diagnosis of ASD under DSM-IV. The intent is not to exclude or reduce the number of individuals being diagnosed. However, there is a need for ongoing monitoring of how the DSM-5 criteria affect diagnosis, especially those adults and very young children, two groups for whom we still have relatively little information. The committee has stressed that the new DSM-5 criteria represent a “living document,” in which changes can and likely will be made as new studies are conducted.

To read the rest of the “Answers to Frequently Asked Questions about DSM-5," please visit: http://www.autismspeaks.org/dsm-5/faq

Access the Family Services Resource Guide – National Information here: http://www.autismspeaks.org/family-services/resource-guide

To contact the Autism Response Team:
Phone: (888) 288-4762
Phone en Espanol: (888) 772-9050
Email: familyservices@autismspeaks.org

The National Philoptochos Society’s Autism Assistance Fund was established in July 2008 in response to the growing number of cases of people with autism. The fund was created with the objective to heighten awareness of autism and provide assistance and support to persons within the autism spectrum. 

 Only 29 states mandate that the costs associated with the treatment and therapy of autism spectrum disorders be covered by health care insurance, leaving families to individually address devastating financial burdens.  The National Philoptochos Society’s Autism Assistance Fund was founded with the growing needs of these families and individuals and the organizations that devote themselves to aiding children and adults with autism.

The combined total of disbursements through the Autism Assistance Fund in 2010 and 2011 was $38,600. In 2012, total disbursements have totaled $68,278. These grants go to organizations with programs that are in need of funding or individuals and families who are in need of assistance. 

The grants awarded during the National Philoptochos Convention last year are listed below.

Cerebral Palsy of Westchester
Rye Brook, New York
To purchase playground equipment to enhance their recreation program for children ages, 5 –14.

Elija School
Levittown, New York
This grant will go towards the purchase of iPads for use as educational tools.

Have Dreams: Helping Autistic Voices Emerge
Park Ridge, Illinois
The Johnny Bach sports Education Program, age two to adulthood - to enable their staff to develop programs that encourage autistic children to keep their bodies in motion for overall health and wellness.

Margaret Murphy Center
For Children
Auburn, Massachusetts
To purchase commercial grade playground equipment plus installation; to help with developing muscle tone and promoting activity.

West Elementary School
Andover, Massachusetts
The grant will help the elementary school purchase iPads as motivational and educational tools for children with ASD (Autism Spectrum Disorder).

Community Connection
Cape Cod, Massachusetts
Their focus is on adults with ASD over the age of 22 years old. To provide specialized staff training as well as purchasing electronic equipment and materials.

We are all about building independence for those we serve. Our clients are active community members who give back by volunteering with local charities, working in community establishments, participating in other social and athletic activities, as well as taking an active role in many of our fundraising events. This grant will further our abilities to offer the highest quality services and build opportunities for those we serve so that each one can live as independently as possible.
-Danielle Munafo Dona
 Communications Coordinator at
 Community Connections

North Shore Educational Consortium
Beverly, Massachusetts
For the purchase of 10 iPads which have proven to be a highly educational and effective communication device.

Child Study Center
Fort Worth, Texas
Their program provides diagnosis and treatment services, treating children though applied Behavior Analysis Therapy with individualized instructors that provide skill building - targets children 3-8 years.

Avondale House
Houston, Texas
Metropolis of Denver
Avondale House provides therapeutic horseback riding, which promotes motor skills in a child and strengthens them mentally and physically. To financially support ten students participation in this day school program.

Webb Street School
Part of Gastonia County Schools
Gastonia, North Carolina
To purchase iPads for communication and educational tools for school children, middle school teens and adults.

Autism after 21
Boca Raton, Florida
To support a Day Care program that offers life skills and independent living for older adults with ASD over the age of 21.

Ann Arbor Public Schools Educational Foundation
Ann Arbor, Michigan
The grant will go towards the purchase of iPads for communication and educational tools for children with ASD.

Contra - Conta ARC (ADS)
Advocacy and Research
Martinez, California
To support Parent Scholarships to attend the Parent Conference on Autism for parents of children up to eight years of age. Goal of Conference is to provide parents with information, research and support.

New Horizons in Autism
Neptune, New Jersey
Metropolis of New Jersey
The grant will provide funding for the purchase of five iPads, with two year service plans, training and supplies.

Cedar Lane Elementary School
Loudoun County Public Schools
Ashburn, Virginia
Metropolis of New Jersey
The grant will support the purchase of iPads for communication and educational skills for children with ASD.

University of Medicine of New Jersey
New Brunswick, New Jersey
For support of the Mom 2 Mom Helpline, this is a faith based project that allows callers to receive support from peer moms.

Arc of Northern Shenandoah Valley 
Winchester, Virginia
Specifically targets individuals with ASD and provides scholarships for services and activities that will enhance their quality of life.

Timothy School             
Berwyn, Pennsylvania
The grant will support educational and enhancement programs that provide instructional technology, strengthening individual creativity and teaching community integration.  

Rich Center             
Youngstown, Ohio
In support of early intervention and preschool programs that prepare students living with ASD for kindergarten and ultimately full integration into their school districts.

For more information about Autism, a comprehensive look at the changes as well as resources available, please visit: www.autismspeaks.org

The article “Opinion: Let’s talk about autism in public spaces” touches on why we should all be a little more sensitive to the needs of the parents of autistic children. Their jobs are challenging enough without them having to worry about the judgment or harsh words of others: http://www.cnn.com/2013/05/30/living/autism-in-public-spaces-salon/index.html

When articles are written about special needs it is rare to find any that focus on the siblings. In the article “Autism can have large effects, good and bad, on a disabled child’s siblings,” the author, Ranit Mishori, MD describes her struggles and the long-term benefits she experienced. To read more: http://www.philoptochos.org/assets/files/socialservices/autism/09-03-12Effects%20of%20Autism%20on%20Disabled%20Childs%20Siblings_WashingtonPost.pdf

-Vivian Siempos