Saturday, July 30, 2011

Autism Spectrum Disorder (ASD) by State, Race and Gender

 Autism has become a very real problem for children and families since it was diagnosed in mass in the mid-1980's and into the 1990's. As someone who does not have a child with autism or anyone in my family or circle of friends with children with autism, it has become, for me, a part of the background noise which is health-related news and reason for concern. There has been a good deal of data and information brought to the attention of parents via celebrities, such as Jenny McCarthy, and it would appear that using celebrity status to spread the word has helped in early diagnosis of the disorder which can help offset some of the effects. But just because celebrity parents are carrying the banner of the cause does not necessarily make a public health risk. Unfortunately, autism is an alarming public health problem and one to which we have no cure. According to the CDC, "It is estimated that ...an average of 1 in 110 children in the United States have an ASD (Autism Spectrum Disorder)" (CDC).

There has also been some negative press recently regarding the link between autism and vaccinations in children, most notably the case against Dr. Andrew Wakefield in his decade-long fraudulent study which linked the disorder with inoculation. In 2011, a British Medical Journal debunked Dr. Wakefield's work which had garnered him much support from parents who were desperate to find a culprit for their child's lifelong illness. According to a 2011 ABC News report, Dr. Wakefield stood to collect upwards of $750,000 for publication of his research in reputable journals. With the genuine desperation felt by hundreds of parents each year, who's toddlers are diagnosed with autism (of some variety) and the billions of dollars funneled into research as to the key causes of autism, what do we actually know? Quite a bit actually. 

According to WebMD, Autism has been "in use for about 100 years" (WebMD.com). That's to say that Autism has been recognized as a cognitive disorder since the early 20th century. There has been much misinformation and a lack of critical data surrounding the disorder. "Autism and schizophrenia remained linked in many researchers’ minds until the 1960s. It was only then that medical professionals began to have a separate understanding of autism in children...During the 1980s and 1990s, the role of behavior therapy and the use of highly controlled learning environments emerged as the primary treatments for many forms of autism and related conditions" (WebMD.com). This would appear to be a clear step toward recognizing autism for what it is and therefore finding accurate treatments which did not include "LSD, electric shock, and behavior change techniques. The latter relied on pain and punishment" (WebMD.com). Also in the murky and misinterpreted conclusions for autism over time, "...eminent psychologist Bruno Bettelheim promotes the 'refrigerator mother' theory, which holds that 'cold,' unurturing parents, especially moms, are to blame for autism" (Washington Post). This was later found to be completely untrue.

In 1980, "autism is categorized as a developmental disorder separate from schizophrenia in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), the reference book used by health-care professionals to diagnose mental health disorders" (Washington Post). This was important in that it broke the tie that autism was somehow a product of another unrelated mental disorder, which eventually set autism on the path to being seen as a "spectrum disorder" or one that manifests itself in different people, in varying degrees with varying symptoms. While Dr. Hans Asperger correctly identified what he called "a milder form of autism" in 1944, it wasn't until 1994 that "Asperger's syndrome is officially added to the DSM-IV as a progressive developmental disorder. Two nonprofit groups, the National Alliance for Autism Research and Cure Autism Now, are founded to stimulate autism research and raise awareness about the disorder" (Washington Post). Again, an important win for autism advocates who saw the disorder as more than a sum of its dis-coherent parts.

The appropriate and most contemporary therapeutic approach to treating Autism Spectrum Disorders (ASD) is cognitive behavioral therapy which has shown to help, particularly if the child has been diagnosed early on. "The American Psychiatric Association Practice Guidelines (April 2000) indicated that among psycho-therapeutic approaches, cognitive behavioral therapy and interpersonal therapy had the best-documented efficacy for treatment of major depressive disorder, although they noted that rigorous evaluative studies had not been published" (Autism-Help.com).Since there is some evidence that autism is linked to other mood disorders such as anxiety, depression and obsessive compulsive disorder, especially in autism disorder more so than PPD-NOS, Asberger's Syndrome, Rett Syndrome and Child Disintegration Syndrome, all of which fall onto the autism spectrum. Autism, like mood disorders and other mental illness is thought to be genetic. It is important to note that while some autistic children do express the some of the same symptoms of mood disorders, there is no clear biological evidence which links the two. "Autism runs in families. The underlying causes, however, are unknown. Most researchers agree that the causes are likely to be genetic. Others also believe that environmental factors may be involved" (WebMD).

The Center for Disease Control and Prevention (CDC) did not begin tracking the rates of autism across races, genders and ethnicity until the year 2000. Up and until then, there had been aggregate data being collected and funded by autism research groups such as National Alliance for Autism Research and Cure Autism Now. Once the CDC got involved, it became possible for an federal health organization with clout and resources to track the rates of diagnosis. Toward that end, the CDC founded the Autism and Developmental Disabilities Monitoring (ADDM) Network in order to better track specific rates of autism diagnosis regionally, via 12 dedicated sites:


A map of the ADDM participating states and frequency of reporting.

The fact that such an organization exists to track rates of ASD would be interesting to the point of quaint if they were not delivering some surprising and unexpected results. The CDC reports that nationally, "one to four percent of people with ASD also have tuberous sclerosis" and that "about 40% of children with an ASD do not talk at all. Another 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them" (CDC). Interesting and helpful to the tracking and furthering diagnosis and treatment of ASD, but says does not tell us anything about the rates of autism by state, which varies! The CDC reports that "ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls" (CDC). What the ADDM shows is that the rate of autism for boys and girls varies from state to state, for example, ASD for boys in Missouri (19.3 per 100.00 population) were nearly 3X higher than for boys in Florida (7.3 per 100,000). The rate of ASD for girls (while categorically lower than for boys) was 5X higher in Arizona (3.7 per 100,000) than in Florida (1.0 per 100,000).

According to the ADDM report, "across the six sites (Georgia, Maryland, West Virginia, South Carolina, Arizona and New Jersey) the prevalence of ASDs ranged from 4.5 to 9.9 per 1,000 children aged 8 years" (CDC). Among those states, New Jersey had the highest rate of ASD with 9.9, while South Carolina, Arizona and Georgia all held a median rate of 6.5. There has been speculation that heavy metals in the water supply may be an indicator for rates of autism, but there is no credible data as of yet to support that theory.

While the conditions and causes of ASD are still unknown, what is known is that we currently do not have the resources in place to adequately treat adult autism, which brings its own set of problems both socially and amongst families with autistic children. The PBS program, Need To Know reported this week about the challenged that face parents of autistic adult children. And according to the CDC, the estimated cost for caring for a life-long autistic child is $3.2 million. "On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater" (CDC).

Let's hope that we can get to the bottom of what is causing the problem.

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