Lynn Karasik, RN, MSN
Bryn Mawr Hospital Department of Psychiatry

Autism is the fastest growing developmental disability.  Since the 1990's, the United States population has increased 13% while autism has increased 172%.  Currently, the Centers for Disease and Prevention estimates the prevalence of autism may be as high as 1 child in every 166 births.  (See www.cdc.gov/ncbddd/autism.)  Four times more common in boys, autism is found equally in all cultures, races, socio-economic strata, lifestyles and educational levels.  It affects more than 1.5 million children and adults.

Autism is a lifelong disability that usually appears before a child is 3 years old.  The disability has no known cure.  Children are either born with the disorder or with the potential to develop the symptoms.  It is not a mental illness but rather a spectrum disorder--symptoms and characteristics appear in a wide variety of combinations ranging from mild to severe. Children and adults with autism are said to "be on the spectrum" and the disability is referred to as Autism Spectrum Disorder or ASD.

ASD has no known single cause; however, it is believed to be a result of a neurological disorder that affects the brain's normal functioning.  Children and adults who are on the spectrum have characteristic impairments in verbal and/or non-verbal communication, social interaction, sensory experiences and play or leisure activities.  Repetitive stereotypical movements and actions are a hallmark of an autistic individual.  Lack of social reciprocity (e.g. failure to make eye contact or have empathy) is another key characteristic.  Difficulty expressing needs, reading social cues, making eye contact and adapting to change are other factors that make it difficult for an autistic individual to fit into the mainstream of society.

Research into the causes and most effective treatments is ongoing.  In their Op-Ed piece in the November 21, 2006 edition of The New York Times, Kathryn Garland and Michael Garland wrote that "with the recent passage of the Combating Autism Act (in the Senate), the House of Representatives is now poised to approve landmark legislation to help scientists understand the causes and characteristics of autism".  If this bill is signed into law, finally there will be funding available through The National Institutes of Health to support this very vulnerable population.

Falling under the umbrella of Pervasive Developmental Disorders, autism (Autistic Disorder) is grouped with other neurological disorders that impair development.  The other diagnostic categories are:

• Asperger's Disorder (AS)
• Childhood Disintegrative Disorder (CDC)
• Rhett's Disorder
• Pervasive Developmental Disorder-Not Otherwise Specified (ADD-ONS)
  

Information about specific diagnostic criteria for each of these developmental disorders can be found in the American Psychiatric Association's Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TRY). (See www.allpsych.com/disorders/dsm.html.)

Early intervention is the key to maximizing the potential of each child who is "on the spectrum".  It begins with knowing the developmental milestones and observing for them in all children.    "Learn the Signs. Act Early" is a federally funded CDC awareness campaign to educate health professionals and parents about childhood development including red flags for autism and other developmental disorders. The program is based on the premise that the earlier children with developmental delays receive appropriate assessment and intervention, the more likely it will be for them to reach their full potential.  Through their website www.cdc.gov/actearly/ or their phone number 1-800-CDC-INFO, parent and health care professional kits are available free of charge.  First Signs in Pennsylvania (www.firstsigns.org) has also trained primary care practitioners to recognize early warning signs of ASD and other developmental disabilities. 

Educational intervention for children with ASD should be individualized through The Individuals with Disabilities Education Act (IDEA) yielding an Individual Educational Plan (IMP) tailored to the child's unique strengths, weaknesses, intellectual ability and functioning level.  Treatments for children and adults on the spectrum are varied and are described by the Autism Society of America (ASAP) on their website: www.autism-society.org.  Adults with ASD present unique struggles with work and living situations.  The ASA provides links to information about some of these agencies.  The Pennsylvania Department of Welfare is also hard at work developing and implementing recommendations of its Autism Task Force in order to increase available resources and services to individuals with ASD, their families and the professionals who work with them.  (See www.dpw.state.pa.us./Disable/Affairs.)

The Autism Society of America, the voice of the autism community, uses a puzzle ribbon as its symbol to represent the mystery and complexity of autism, the diversity of people living with the disability and the hope through research and increasing awareness signaled by the ribbon's brightness.