I'd like to share a couple of recent items I find interesting in the realm of autism. On the surface the stories appear to have little in common aside from their autism connection. However, when viewed in tandem and explored beneath the outer layers, the stories are deeply connected and make a very strong case for universal access to healthcare.
In some regions of California, autism numbers have not only soared during the last couple of decades, but the data has shown it to be happening in geographical clusters. Researchers from the University of California, Davis chose to study these clusters and the results were recently released.
NPR.
The study found that differences in parents' age, education and ethnicity explained the cluster most of the time.
For example, it found that children of parents who finished college were at least four times more likely to be diagnosed than children of parents who didn't finish high school.
[…]
Hispanic parents were underrepresented in all 10 of the clusters, according to the study. That could be because some parents are reluctant to seek help from a state agency if they have a member of the family who is undocumented, Hertz-Picciotto says.
San Jose Mercury News.
"...there is an unevenness in how people are able to access care," (the project's lead investigator Irva Hertz-Picciotto) said. "The California system of diagnosis is a passive one. Parents have to come to a regional center."
A similar link between autism and education has been reported by researchers in several other nations. But in Denmark — which requires autism screening of all children — no difference was found among educational levels of parents.
A diagnosis of autism requires considerable advocacy by parents, who must navigate the complex world of pediatrics, psychiatry and autism experts. Once diagnosed, children gain access to all types of specialized services.
Emphasis mine.
There are a couple of ways a parent can have their child screened for autism. Most reliable is to schedule an evaluation with a neurologist. With adequate healthcare coverage, that's not a problem. If paid out of pocket though, it's a very, very expensive approach.
The other way is to request a special education evaluation through the child's school. This can be effective or dicey on a district-by-district basis, so on balance, this is the less desirable path.
The information in the UC Davis report ties diagnoses of autism to parents' education level. And parents' education level is directly tied to healthcare access, supported by the following figures (pdf):
Overall health insurance coverage for private sector entry-level workers declined from 69 percent to 57 percent Only one-third of entry-level high school graduates enjoyed health benefits, compared to two-thirds of entry-level college graduates (between 1979 and 2002).
It's worth noting that the UC Davis study covered data from 1996-2000.
The Autism Diagnosis: A Practical Application
When a child who may be on the autism spectrum goes undiagnosed and receives no educational services, the child may be doomed to fail on several levels. In addition to the obvious potential for academic failure, the educators frequently see the child as a behavior problem and the child is treated as such. This of course leads to a myriad of problems that can follow the child for the remainder of her or his life. But with the diagnosis, a school district is required to provide numerous services which - when applied correctly - can make educational success possible.
While the following example involves a non-verbal child whose autism is more highly visible than many other children on the spectrum, the story illustrates one way an education approach tailored to the individual has succeeded.
Eleven-year-old Aaron Cvengros of north suburban Winthrop Harbor is autistic. But that didn't stop the Our Lady of Humility School fifth-grader from becoming the first student there to win an academic competition with the use of a letter board.
Aaron won the National Geographic Geography Bee on Jan. 22, participated in by other fourth- through-eighth-grade OLH students. The contest is designed to help spark interest in the subject.
[…]
"It was one of the most remarkable things I've ever seen," said OLH Principal Patrick Browne. "This was one of those breakthrough moments. And it was the first time a student at OLH has won a contest using the RPM (Rapid Prompting Method)."
Denise Lamm, Aaron's assistant who helps him in the classroom, said the boy used the regular letter board for the geography bee, using RPM by pointing to each stenciled letter with a pencil to spell out his answers. "He used the stencil so the judges could see his choice," said Lamm. In class he sometimes uses a laminated board.
[…]
Aaron, using a letter board being translated by his mom, said he won a medal in the competition. His mom said he wouldn't wear the medal all day at school because he didn't want to seem boastful in front of his fellow students.
Please indulge me. I'd like to leave you with a personal experience I've had with a child who used a letter board.
At an autism event, I met a mother and daughter. The girl was 13 and profoundly autistic...non-verbal, occasional grunts, squeals, etc. All outward appearances gave the impression that the girl was oblivious to surrounding conversations. Her mother showed me a laminated card with the alphabet on it, a letterboard, which looked similar to these:
The girl would communicate by pointing to letters, spelling out words. According to her mother, once her daughter began using the letterboard a major part of her world had become unlocked. I proceeded to have a normal, intelligent conversation with the girl.
I saw the mother and girl a couple of months later at another event and the girl gave me a smile that lit up the galaxy.