"It's easy to instill fear. It's harder to break away from it," says pediatrician Cliff O'Callahan of the Middlesex Hospital Family Medicine Program.
Parents always want to do the best they can for their children. This is more often the case for parents who have children with autism. But unfortunately, fear has become a major component in how many parents deal with a child with Autistic Spectrum Disorder (ASD).
It is estimated that an average of 1 in 110 children in the United States have an ASD. ASDs occur on average 4 to 5 times more with boys than girls and it is estimated that about 730,000 individuals between the ages of 0 to 21 in the United States have an ASD.
Autism is more accurately termed an Autistic Spectrum Disorder because it is part of a range of developmental disorders with enormous variability. Some people with ASDs are those who are significantly affected – who cannot really communicate or take care of themselves in any way, socially or cognitively – to perhaps those with Asperger's syndrome, who can live on their own, can marry, hold a job but are socially awkward people with maybe a bit of obsessiveness or a quirky style of interacting with other people.
Autism reflects in its most simplistic form, something that has a genetic basis that affects one's ability to communicate with those around them. Many studies are now showing that there is an inherited basis for autism. Some autistic individuals can also have an uncanny capability to remember things like names, numbers, or perform complex mathemetical calculations, but still have a significant inability to read social cues, or to be able to control themselves with their obsessiveness and compulsiveness in some situations.
Autistic tendencies can actually be detected in just about all children by the time they are 30 months of age or earlier. Because of this fact, the American Academy of Pediatrics (AAP) and American Academy of Family Practice recommends that clinicians use a tool that allows them to do a much better job at identifying autism than they are able to do by observing a child for a few minutes during a well-child visit. Middlesex Hospital Family Medicine practices use a tool called the M-CHAT screen, which is performed at 18- and 24-month visits for all children to screen for emerging signs of autism. If the child screens positive, they are referred to a local expert for a definitive diagnosis, which in this area is the Autism Spectrum Assessment Program (ASAP) at Connecticut Children's Medical Center. This referral will give the child and family important access to intensive services. The earlier parents start those very intensive services, the more likely they will be able to help their child reach his or her potential.
Within accepted medical practice, this intensive therapy has been shown to be effective. Some of the alternative or complementary methods have not been shown to be as universally effective and many of them can be very expensive. As a result, some parents become afraid of things like hormones in food or other environmental factors. Even more were convinced (and frightened) by the paper published by Dr. Andrew Wakefield and his colleagues in The Lancet (recently determined to be a complete fraud) suggesting that the measles, mumps and rubella (MMR) vaccine might cause symptoms associated with autism.
Dr. O'Callahan believes that the most important thing parents who have a child with newly diagnosed autism should do is reach out and find reliable resources, working within their own comfort level to learn as much as they can about the world of autism, and talking with their primary care providers and specialists. They can provide families with a wealth of information and resources. The local school system is another important point of contact, along with programs like the Autism Society of CT.
"There are great people in this organization who will speak with parents and link them to other parents. They can link them to advocates, who can help the parent navigate the educational system, which is critically important," says Dr. O'Callahan.
The Middlesex Hospital Family Medicine Group and Residency Program practices are part of a very small number of practices in the area that are meeting the American Academy of Pediatrics criteria and guidelines for developmental screening.
In general, the most important thing parents can do for their children in the first few years of their lives is to form a great relationship with the "medical home," a term which means the medical practice in which the child will be cared for, sometimes for life. They should willingly complete the developmental screens that their providers offer when coming for well-child visits – and if their practitioner does not provide the developmental screens, the parents should specifically ask for them. Only with good tools can physicians identify problems early. A standard vaccine schedule for children is also recommended.
Another helpful resource for parents concerned about the early stages in their child's life can be the Ages and Stages Questionairre through "Help Me Grow," which can be obtained by calling the state Infoline number, 2-1-1.
And for those parents with i-Phones, there is a special application available that provides a wealth of helpful information about a child's developmental stages and conditions, hosted by the AAP.