First we took Johnny to our pediatrician sensing something wasn’t going quite right. At 18 months he was a bright happy child, eager to relate to others, and at 2 ½ years he wasn’t recognizable as the same child. He had lost speech, become increasingly less communicative, and had a very hard time focusing for a nana second. My husband and I were alarmed. The pediatrician said to give him a little time. “Give him a little time?” What was he talking about? Didn’t he take my distress seriously? I mentioned “autism” and the doctor was dismissive, “that’s almost a default diagnosis these days.” Three months passed, and things got worse. I was referred to a developmental pediatrician who spent an hour with us, observing Johnny, and taking a thorough history. Things were not going in the right direction. When I told the doctor, I had read about autism and thought her line of questioning pointed to that, she concurred saying she was very sorry and offered to guide me to the appropriate resources.
Driving home, I was devastated. Would he ever call me Mommy? Would he have friends? Would he need to be in a special school? How much was his care going to cost?
Johnny’s regression is a hallmark for autism, which is often misunderstood, and remains-- even for the experts -- one of the greatest medical mysteries of our time. And, it’s one of the most heart-breaking diagnoses a parent can receive. Some children require 24/7 care from the time they are infants through adulthood, and others are able to learn how to navigate the world on their own.
According to the Center for Disease Control, the prevalence of ASD occurs at a rate of about 1 in every 88 children, affecting boys close to 5 times as often as girls. For reasons still unknown, the incidence of ASD has risen in recent years, and is found in children of all races, ethnicities and socioeconomic groups.
Some parents believe that routine vaccinations their child received in early infant check-ups are the cause of ADS. Recent studies find no link between autism and higher exposure to vaccine active ingredients during first two years of life. (Journal of Pediatrics, March 6, 2013).
But what exactly is autism? It is a cluster of neurological developmental disorders. Like most illnesses, the severity of autism runs along a spectrum. Hence, the term “autism spectrum disorders,” or ASD. At the lower end of the spectrum -- what we know as “classic autism”— we see significant language delays, severe social and communication difficulties, and frequently, intellectual disabilities. ASD kids have difficulty in expressing their emotions, so at times they may be disruptive, but with a great deal of love and attention many are capable of a well lived life. At the other end is Asperger’s Syndrome, a much milder form, which is marked by social impairments and unusual behaviors and interests, but typically, no language or intellectual disabilities.
As with most diseases, early detection is critical. So what signs should a parent or caregiver look for? According to the Center for Disease Control and Prevention (CDC), there are numerous signals. A child with ASD might:
- Not respond to his or her name by 12 months.
- Not point at objects to show interest by 14 months.
- Not play “pretend” games (“feeding” a doll) by 18 months.
- Avoid eye contact and want to be alone.
- Have delayed speech and language skills.
- Have trouble understanding other people’s feelings or verbalizing their own feelings.
- Repeat words and phrases over and over (echolalia)
- Have obsessive interests (playing with only one toy for extended periods)
- Get extremely upset by minor changes to routines.
- Flap their hands, rock their body or spin in circles.
- In severe forms, engage in self-injurious behaviors (biting or head-banging).
- Have unusual reactions to smells, sounds, tastes and the way things feel.
Diagnosing autism can be difficult, since there is no medical test. Medical professionals use a screening tool that combines their own observations and those of parents. Usually, a diagnosis made by age 2 is highly reliable. Of course, closely adhering to all post-natal doctors’ appointments for milestone checkups is essential.
In recent years, medical experts have learned a great deal about the causes and risk factors for autism. Among the most compelling findings thus far:
- Genes are a definite risk factor that a person will develop ASD.
- Children born to older parents are a higher risk for ASD.
- Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.
- Early theories of vaccination as a cause have been disproven by the research community.
- ASD’s commonly co-occur with other neurological, psychiatric, neurological and chromosomal diagnoses, such as Down Syndrome.
- Poor parenting does not cause autism.
- Many children with ASD also have gastrointestinal disorders.
To date, there is no cure for autism. But many, many autistic children go on to have highly productive lives. Schools like Giant Steps of Fairfield, CT use a multi-pronged approach to help students identify and develop their individual strengths, combining speech and language therapy, occupational therapy, music therapy and explicit instruction in hygiene and social skills.
The CDC continues to conduct research to understand autism better. Currently, they are in the midst of conducting one of the largest U.S. studies to date, and examining all possible risk factors. Autism Speaks, the unified and vocal organization (www.autismspeaks.org) makes great strides moving autism into the forefront of public health initiatives. Their activists urge the National Institute of Health to devote a larger portion of their annual budget to ASD.
Today it’s practically unheard of for someone not to know a person with ASD.