Autism made front-page news again, this time regarding a famous research paper linking vaccines to autism. That research was a fraud. What does this mean? It means we continue to search.
Like all parenting, raising a child with autism is a journey. A journey for which there is no set course, no GPS to guide you. A journey filled with wonder and excitement, pitfalls and disappointments but rarely is there monotony and boredom.
Of course, everyone's experience is different, but often the road of autism begins with questions:
"Why isn't my child talking?"
"Why does she continually line up the groceries?"
"Why does he run from crowds?"
"Why doesn't she play with toys like the other children?"
"He used to be so gregarious and now he is in a world all his own, what happened?"
The list goes on. These questions become more troubling and often parents seek answers on the Internet, with friends and family, and with the medical community. The quest begins for a diagnosis, both medical and educational.
Autism can only be medically diagnosed by one of four professionals; a psychiatrist, a developmental pediatrician, a clinical psychologist or a neurologist. How do you get there?
You start with your pediatrician. All pediatricians have access to autism checklists and rating scales. If you suspect your child may be affected by autism, tell the receptionist when you are making an appointment. There may be questionnaires that you can fill out ahead of the appointment. If there are red flags, your pediatrician will refer you to someone who can diagnose.
Although communities like ours are working to have a diagnostic team locally, most often families are referred to agencies out of town and the wait can be months and months. The questions linger.
An educational diagnosis is a little different. This can begin with your local school district and/or the county health department. Although neither of these entities will "diagnose" a child with autism, they can determine if a child would benefit from intervention. So even before a medical diagnosis is established, the need for intervention can be determined.
The earlier a child affected by any disability receives intervention, the greater their chances of success. Due to the plasticity of the brain, which is greater in younger children, interventions begun when children are toddlers can have greater efficacy and teach pivotal behaviors that will allow for growth that may not be possible later.
This does not mean that there is a "window of opportunity" that closes completely. Research has shown that the brain remains flexible and can create new paths and patterns well into adulthood. Intervention at any age can achieve results and growth.
It does mean that intervention at an earlier age can produce better results quicker and open more doors and possibilities.
This all means that while we may still need to wait for a medical diagnosis, we do not need to wait for an educational analysis. This may not answer the question, "is my child autistic?" but it can provide valuable tools to help a child make the largest gains possible.
After diagnosis, for a moment a parent may feel like the journey is over. "Finally, I know why my child is different. Finally, my search is over." But then, there are new questions. "How did this happen?" and "What now?"
It is the, "How did this happen?" question that led to the front-page article. When something affects our children, it is human nature to want to know why. It is also important to know why from a professional standpoint for prevention and treatment purposes.
The "why" of autism has been answered in different ways over the years that have proven false. Believe it or not, one of the first reasons thrown out was, "refrigerator mothers." Moms were blamed. "The experts" decided that cold mothers didn't show their children enough affection and caused autism. Thankfully that was soon dispelled.
Of course a mother's actions did not cause autism.
Now another theory has been blown out of the water. Vaccinations containing thimerosal have long been suspected and blamed for causing autism. Now researchers have come forward to say the numbers don't really add up.
What really does cause autism? As an article sent to me by a reader points out, it is not a clear-cut case.
There are genetic markers, but those markers are not universal, meaning not all children affected by an autism spectrum disorder have the same genetic markers. To complicate the issue, there are individuals who have the genetic markers but are not affected. It is a complex issue and one that researchers will continue to investigate.
But for parents, questions still linger. A big one is: "What now?"
There are no crystal balls that will show us the future. We don't know even if our neuro-typcial children will go to college, get married and live happy, productive lives. Those questions loom larger for children affected by an autism spectrum disorder. The range of possibilities is wide, from requiring assistance 24 hours a day for the rest of their lives to earning a doctoral degree and beyond.
But one thing is certain. There is hope. These children can learn. They can be successful. They can find happiness and contentment and we can help them find it. Through early identification and intervention, we can help all children find the success they deserve.
Kathleen Gilmore of Walla Walla has taught individuals affected by autism spectrum disorders for more than seven years. She has a master's degree in education and is enrolled in a board certified behavior analyst certification program. She is the founder and president of Eastern Washington Autism Spectrum Disorder Association, a local nonprofit organization dedicated to raising awareness and helping families affected by autism. She can be reached through the group's website at www.ewasda.org.