Few childhood disorders have caused parents more angst and despair than autism.
Once thought to be a form of schizophrenia, autism has been subject to years of evolving diagnosis — and along the way, ever-deepening controversy.
Its formal definition in the Diagnostic Service Manual (DSM), the nation’s Bible for mental health, experienced a marked shift in 2013 with the release of DSM-V.
For the first time, autism was viewed less as a specific condition than as a spectrum of conditions of varying severity that could appear at almost any time – far beyond the first 30 months of life once viewed as the “crucible” period.
In place of autism, doctors and pediatricians now refer to “autism spectrum disorder,” or ASD. It includes mild forms of autism known as “pervasive communication disorders” and what was once referred to as “Asperger’s Syndrome,” which to some observers hardly seems like autism at all.
The release of DSM-V was meant to clarify what autism is and isn’t — and to make more precise and tailored services available to sufferers and their parents.
In fact, it hasn’t settled much at all
Critics say autism diagnoses are more prevalent now because parents are pressuring public agencies to make more services available. The more widespread the disease is thought to be, the higher the budget required to treat the condition, critics say.
They have a point. In 2014, after the release of DASM-V, the CDC released statistics showing the 1 in 68 children had some form of autism, up from 1 in 88 in 2012 – a 30% increase. In 2018, the figure was 1 in 59 – another 15% increase.
All told, since 2004, autism prevalence has increased a whopping 200%.
Officially, the diagnosis for autism should include a combination of elements, including a withdrawal from social interaction, extreme sensitivity to sounds and smells, and pronounced speech and behavioral problems.
In fact, there is no known scientific test for autism. Diagnoses depend on the careful judgment of neurologists, pediatricians, and child psychologists not all of whom are qualified to diagnose a disorder that is still commonly confused with other developmental disabilities.
Partly as a result, prevalence rates can vary widely by state – from a low of 1 in 77 in Arkansas to just 1 in 35 in New Jersey.
Despite disagreements over prevalence, public health officials do agree on the need to screen children in their infancy because early diagnosis is deemed essential to effective autism treatment.
A simple screening test that identifies the possible onset of autism is available for children as young as 18 months, though a more formal diagnosis must await further observation, usually sometime before age 4.
In the past, many children did not receive a diagnosis until much later in life – if at all — limiting what could be done to reverse deeply ingrained patterns.
Once a child is diagnosed with autism, parents are anxious to qualify to receive a subsidized autism guide – a “shadow teacher” — for their children in primary school. The guide follows their children throughout the school day and helps keep them calm and focused on learning.
Parents can also receive funding for a wide range of educational and behavioral therapies to help “normalize” their child within the context of family life.
Pressure from parents, combined with ever-expanding autism diagnoses, has clearly paid off.
Spending on autism services in the United States has more than tripled to $126 billion since 2004. On average, autism sufferers receive twice the child support services of children without recognized disabilities.
One of the biggest problems in the autism treatment field is how to handle the transition to adulthood. Adult autism sufferers often fall off the radar screen, even deemed by their parents as beyond hope.
But with persistent treatment support, many adults, even those with relatively severe childhood autism, do transition to the workplace – and excel.
Another area of increased interest is improved autism diagnoses for young girls.
Autism afflicts boys at 8 times the rate of girls – but some critics say that’s only because girls with autism are under-diagnosed and misdiagnosed due to gender bias.
Boys are presumed to be aggressive, but when young girls seem unusually withdrawn or non-communicative, their parents and medical specialists may conclude that the girls are merely “shy” or simply “being girls.”
Gender assumptions also skew scientific research on autism, which is typically based on tests with all-male cohorts. As a result, failure to diagnose girls becomes a self-perpetuating cycle.
In recent years, some scientists have begun working on a new blood test to try to identify autism among infants of either gender – even while still in the womb.
In 2017, news broke that researchers at the University of Warwick in London had developed a test that was “92 percent accurate.”
Despite the fanfare, most scientists quickly scoffed at the claim.
“This is a promising area.[but] it’s a very long way from a ‘test for autism’,” concluded Dr. Max Davie of the Royal College of Pediatrics and Child Health in the U.K.