“There’s also something else going on behind the scenes”, states Dr. Jon Baio, of the CDC in an interview aired on YouTube with Dr. Iskander. The CDC collects data every year on autism rates from a particular group of states and age range. Critics of the data collection methods from the past few years have found some solid reasons to base their criticism upon. Because of this, autism remains a hot topic around the world, particularly here in the United States.
When collecting the data, keep in mind the report is from data collected in 2012 on a small group of children that live in 11 states. These children are 8 years of age and older and live in the following states: Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah and Wisconsin. This group of states is known as the The Autism and Developmental Disabilities Monitoring (ADDM) Network. Previous to this network being developed, the CDC would choose different sets of states to monitor. The industrialized states in the Northeast, with the exception of New Jersey, have yet to be monitored. The State of California did its own monitoring based on data from 1997 and at that time the prevalence of autism grew to an astounding 900% increase in rates. California looked at ages 4 and older. Another point to remember is the age of the child is 8 years, because this the age that children are considered permanent by the Medicaid Waiver who pays for their services in each state. Prior to the age of 8, children receiving Medicaid Waiver dollars are considered “provisional”. Also, the data at two of the sites was based on educational records only and three of the sites on health care provider records only.
With this report released today, the CDC stands strong on the recommendations that a child be diagnosed as early as possible. Yet, children are still being diagnosed, on average, at the same age they were in the 1990’s when autism first began to rise. We are recognizing the signs and symptoms more readily, just not earlier. According to the CDC, “The median age at earliest known comprehensive evaluation was 40 months, and 43% of children had received an earliest known comprehensive evaluation by age 36 months.”
“What we know for sure is that there are many children living with autism who need services and support now and as they grow into adolescence and adulthood,” Dr. Stuart Shapira, chief medical officer for the CDC’s National Center on Birth Defects and Developmental Disabilities, said in an agency news release.
When reading through the data and looking at different states, it clearly stands out that New Jersey has the highest rate with 1 in 41 children or 1 in 26 boys! That’s an increase of 12% from two years ago, according to Autism New Jersey. Nationwide, the rates were 1 in 166 in 2000 and continued to climb since then. However, a study conducted in 2014 by the National Center for Health Statistics (NCHS) found that the rates were 1 in 45. This was a criticized study by experts who stated that because it was based on phone surveys and not actual diagnostic records, the parents were simply giving their opinions. The year prior with the same study method showed the rate to be 1 in 50.
There are several key points that most do agree upon:
- Studies have shown that among identical twins, if one child has ASD, then the other will be affected about 36-95% of the time. In non-identical twins, if one child has ASD, then the other is affected about 0-31% of the time.
- Parents who have a child with ASD have a 2%–18% chance of having a second child who is also affected.
- ASD tends to occur more often in people who have certain genetic or chromosomal conditions. About 10% of children with autism are also identified as having Down syndrome, fragile X syndrome, tuberous sclerosis, or other genetic and chromosomal disorders.
- Almost half (about 44%) of children identified with ASD has average to above average intellectual ability.
- ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%.
- Early Intervention is key.
With all of that in mind, the data is still strikingly remarkable though the CDC states the rates have stayed the same. Autism Advocates everywhere are careful that we are not becoming complancent and accept that for every 68 children, there is 1 with autism. That would mean every single school bus filled with children has at least one child with autism on it in every school district, in every city, in every county, in every state. Advocates are also calling for better data collection, better diagnosing and better research needs to be performed and quickly because the average cost of raising a person with autism through their lifetime is 3 million dollars each.