USAAA Voices are Heard and Action is Being Taken
Commentary, by L.P. Kaplan, PhD, founder and Executive Director of USAAA
SALT LAKE CITY, UT –I am pleased to announce that the American Academy of Pediatrics is listening to our concerns regarding early diagnosis of autism spectrum disorders. The American Academy of Pediatrics (AAP) is now recommending that pediatricians screen all children for autism twice by age 2. Through our constant efforts at USAAA in educating pediatricians and the Academy about the autism epidemic, our voices are finally being heard and action is being taken.
In 1995, our son, at age 3, was diagnosed with PDD-NOS (which we later discovered was a form of autism). Completely unaware what these six letters meant, I attempted to research the definition, but a slow Internet and lack of information did not provide the answer to my query. My wife and I were furious that it took three years to get a diagnosis, then to find out that there was inadequate information regarding autism, and the diagnostician didn't provide any further information that could help us.
The origins of USAAA began at this time twelve years ago.
Knowing the struggle my family had in obtaining an early diagnosis, my first goal for USAAA was to address the significant delay in diagnosis occurring nationwide. I first brought this issue to the attention of the AAP in 2000 while working on my doctoral dissertation. The supposition of the study was that thousands of children went undiagnosed each year during the late 1980’s through the 1990’s. This seemed to arise from an unrecognizable form of the disorder beginning at an early age from 0-3 years.
AAP cited my research study in PROS, a pediatric research publication, in the Spring of 2001, which was distributed to the AAP members. To further confirm our concern about delayed diagnosis, I asked the AAP researchers and pediatricians to help us continue our diagnosis program research project. The American Academy of Pediatrics followed by issuing the first guidelines about autism in 2001.1
What did I find in this first-ever study on early diagnosis? This study discovered that a proper diagnosis of autism at initial presentation (i.e., first time visit to the doctor) was rarely made, resulting in a significant delay in diagnosis:
- Less than three percent of pediatricians made a correct diagnosis of autism.
- Approximately half of the children were diagnosed after age three.
- No child was diagnosed within the first year of life.
- Fifty-eight percent of the pediatricians did not notice any delays in development of the children who were later diagnosed with autism.
- When asked what criteria they used for assessment in noticing developmental delays, forty percent did not know.
These findings certainly support the decision of the academy to encourage early detection and treatment of spectrum disorders. Hopefully, with new information and tools available from AAP for pediatricians, autism will be able to be identified early on, so parents and caregivers can start an intervention program immediately.
Luckily for our son, my wife and I started biomedical and behavioral interventions long before any diagnosis in 1993, one year after he was born. Biomedical interventions did not exist as they do today, and behavioral therapies have grown exponentially in programs and quality over the years, too.
We are finally being heard. Our organization is made up of parents, individuals with autism, family members, caregivers, physicians, researchers, educators, therapists, social workers, nurses, as well as companies dedicated to providing therapies and interventions for individuals with autism spectrum disorders.
Without all of you, our voice cannot be heard. YOU ARE MAKING A DIFFERENCE in the lives of your children and all the children around the world that are affected with ASD.
Thank you for your continued support of USAAA.
L.P. Kaplan, PhD, founder and Executive Director of USAAA
1 Click here to read "AMERICAN ACADEMY OF PEDIATRICS: Developmental Surveillance and Screening of Infants and Young Children," POLICY STATEMENT, PEDIATRICS Vol. 108 No. 1 July 2001, pp. 192-195.
Click here to read "Technical Report: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children," Pediatrics, Official Journal of the American Academy of Pediatrics, Vol. 107 No. 5 May 2001, p. e85.
Click here to read "Identifying Infants and Young Children With Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening," POLICY STATEMENT, PEDIATRICS Vol. 118 No. 1 July 2006, pp. 405-420 (doi:10.1542/peds.2006-1231). (A recent survey of American Academy of Pediatrics (AAP) members revealed that despite publication of the 2001 policy statement "Developmental Surveillance and Screening of Infants and Young Children"5 and national efforts to improve developmental screening in the primary care setting, few pediatricians use effective means to screen their patients for developmental problems.2 This 2006 statement replaces the 2001 policy statement and provides an algorithm as a strategy to support health care professionals in developing a pattern and practice of attention to development that can and should continue well beyond 3 years of age.)
Who we are
US Autism & Asperger Association (USAAA) is a leading nonprofit organization for Autism and Asperger education, support, and solutions. Our goal is to Provide the Opportunity for individuals with autism spectrum disorders to achieve their fullest potential.
In 1994, USAAA began improving the quality of life of individuals and others affected by ASD. Since then, our initial goal has not changed, but our ambitions have expanded. USAAA is dedicated to:
— Providing immediate solutions through expert guidance and compassionate support.
— Consolidating the overwhelming amount of information and resources to simplify the lives of all associated with autism.
— Individualizing education on treatments and services for the diverse population of those affected.
— Providing networking opportunities for parents, professionals, students, educators, and individuals.
By recognizing the highly individual and diverse nature of treatment and services, USAAA offers information and education that reflects a variety of views and practices regarding treatment and services to allow maximum choice and benefit for the ASD community.
What we do
US Autism & Asperger Association has worked continuously to Provide the Opportunity for individuals with ASD to achieve their fullest potential. We have assembled a team of world-renowned experts to address the many questions and problems that parents, families, individuals, practitioners, teachers, and caregivers confront daily. USAAA has impacted the ASD community through:
— USAAA International Conferences. From August of 2006 to February of 2008, we have hosted four of the most comprehensive Autism and Asperger conferences in the world.
— Disseminated news, information, and resources on Autism and Asperger’s Syndrome.
— USAAA WeeklyNews reaches over fifty thousand people every week.
— Community events nationwide. We have supported and aligned with many autism organizations to carry out the mission of Improving Lives, Together.
— Webcasts, publications, and our website.
It is our mission to continue improving the quality of life of all affected by ASD. We have begun work on research projects, awards programs, sibling-support programs, a virtual autism information center, and future conferences. Our promise is to support you and provide you with answers in your quest.
How we can help you
USAAA reaches out to people who want resources, guidance and support for autism spectrum disorders. We help you by consolidating and individualizing the overwhelming amount of information and resources.
One way this is achieved is through our conferences, where we focus on ways to improve the quality of life by conducting presentations in the areas of biomedical and educational interventions, research, diet and nutrition, and family issues. “Throughout this conference, it is our hope that you'll find a balance of concepts and pragmatics, from current protocols to research, including biomedical, developmental, and behavioral realms, right down to tools that you can use immediately to begin or add to those needed for your journey,” explains Dr. Phillip C. DeMio, USAAA Chief Medical Officer.
We are also able to help you by providing a complimentary weekly email newsletter that addresses a wide range of topics on autism spectrum disorders. We feature up to date news, special offers, tips, and articles from our experts.
Our web site is another valuable resource to you. There, you can access expert publications and videos. Our autism information center, a virtual library of individualized and extensive information on ASD, will be completed in 2008.
By utilizing our team of educators, health care practitioners, parents and individuals with ASD, you will be armed with tools, support and empowerment to help you on your journey.
Never give up! You never know what is truly possible in terms of improvement of outcomes or recovery. US Autism & Asperger Association is Providing the Opportunity: the way to a more purposeful life.