Autism: Will Increased Awareness and Funding Solve the Puzzle?

Ten years ago I had a vague notion of autism and did not know anyone with the disorder. Five years later, my 1-year old grandson began to exhibit unusual behaviors such as spinning objects, lining up toy cars in perfect rows, and refusing to eat all but a very few foods. At the age when children are typically talking, he did not even babble. What ensued was a series of evaluations and therapy ending with a diagnosis of autism. As the incidence of autism rises, more and more families endure the same scenario. As they attempt to confront the reality of autism, they encounter more questions than answers about the diagnosis, prevalence, causes, and treatment. It is no wonder that the symbol for the disorder is a single piece from a jigsaw puzzle.

We who parent, grandparent, educate, and care for children can not afford to be in the dark about autism. Some of the basics about autism are discussed in this article.

What Is Autism?

Autism is diagnosed by observing behaviors and traits that have traditionally been associated with the disorder. Autism is characterized by deficiencies in speech, social interaction, and communication. Common behaviors include failure to speak, delayed speech, tantrums or "meltdowns," head-banging, poor eye contact, repetitive behaviors, absence of imaginative play, and sensory problems. If a child exhibits enough of the indicators in certain combinations, a diagnosis is made with reference to a spectrum that ranges from low-functioning autistic individuals to those with high-functioning autism, Asperger syndrome, and the vaguely-termed "pervasive developmental disorder not otherwise specified" (PDD-NOS). These conditions are referred to collectively as Autism Spectrum Disorder (ASD).

What Causes Autism?

The cause of autism is hotly debated. ASD is generally regarded as a genetic disorder. The chances that a child will be diagnosed with autism increase significantly if an older sibling is autistic. Researchers also suspect that environmental factors may play a role. It is possible that a combination of genes and environmental factors may cause autism. For example, some children may have a genetic defect that makes them particularly susceptible to environmental factors. Older fathers and excessive TV viewing have also been posited as possible causes of autism.

Many parents fervently believe that their children contracted ASD by exposure to certain childhood vaccines. such as the measles-mumps-rubella (MMR) vaccine and vaccines containing thimerisol, a preservative with mercury. Some small studies have detected a relationship between vaccines and autism. To date, however, the leading medical authorities have not recognized a causal link between autism and the MMR vaccine or thimerisol-containing vaccines. It is possible that the vaccines came under suspicion because of a mere coincidence - the first signs of autism typically occur about the same time as children are given the MMR vaccine. Most vaccines no longer contain thimerisol.

How is Autism Treated?

There is no cure for autism. When a child is diagnosed with ASD, parents are confronted with a confusing array of treatment options, including intensive behavioral therapy, special education, gluten-free diets, and medication. Commonly, a treatment that appears to help one child may have no impact at all on other children. Those without the resources available for private therapists and private schools rely on the public education system. While the programs and resources vary considerably from state to state, the common goal is to mainstream a child with autism as early as possible. Until a child is ready, however, a school may offer special classes for autistic children or provide aides to accompany the child to the mainstream classes. My grandson, a Washington resident, is in a special kindergarten class that focuses on social skills in the morning. After lunch, he attends a regular kindergarten class with an aide.

Individuals on the lower end of the autism spectrum may develop very slowly, if at all. Those on the higher end of the spectrum can make significant progress in communicating, interacting socially, and controlling compulsive behaviors. Such individuals may aspire to an education, a job, and an independent adult life. Autism is a life-long affliction, however. Even those who achieve a degree of independence may be limited in their choice of careers and may remain reliant on family or friends for assistance in some areas.

Is Autism Increasing?

Until recently, the frequently-quoted statistic was that 1 out of 166 children in the U.S. will be diagnosed with autism. This grim statistic was revised when results of a study conducted by the Autism and Developmental Disabilities Monitoring Network (ADDM) of the Centers for Disease Control were released in February of 2007. Based on surveys of 8-year-olds in 14 states during 2000 and 2002, the ADDM concluded that 1 in 150 children are affected by the disorder. As in prior studies, autism was more prevalent in boys than in girls. Moreover, some states have higher percentages of children with autism than other states.

There is disagreement in the medical community about the meaning of the autism statistics. Some experts believe that the recent study reflects a true increase in the occurrence of autism but are unable to explain the source of the increase. Others think that greater awareness and more frequent diagnoses account for an apparent increase in the number of children affected.

Recent Legislation

The Combating Autism Act of 2006 was passed by a bipartisan Congress and signed by the President on December 19, 2006. The landmark legislation provides for $945 million to combat autism during 2007 through 2011. The funds will be devoted primarily to the diagnosis and treatment of persons with ASD and to research on autism. The new law also provides for early screening and treatment of children at higher risk for ASD.

Autism is a study in questions and controversies. There is, however, a fundamental common ground among researchers, physicians, educators, and parents. All agree that early detection and intervention is imperative and may determine the quality of life of a child with ASD. With increased awareness and more funding for research, those with ASD, and those who love them, may actually see some of the puzzle pieces begin to fit together.