April 22, 2018

Autism Is For Life

A National Writers Series Event
By Clark Miller | Feb. 4, 2017

Autism strikes children, often with little or no warning. There is no cure, and despite all efforts, no one knows for sure what causes it.

As award-winning journalists John Donvan and Caren Zucker point out, autism is for life.

Donvan and Zucker will discuss their research and latest book, In a Different Key: The Story of Autism, at the National Writers Series Friday, Feb. 10, 2017, at 7pm at City Opera House. Doors open at 6pm.  The host for the event is Cari Noga, a local writer and mother of an autistic son.

The subtitle of the book could just as well be A History of Autism, since the authors trace in chronological order how the treatment of autism has progressed, from widespread imprisonment in mental institutions to an awareness that with the right help, many people afflicted with what is now termed Autism Spectrum Disorder (ASD) can be helped. 

What Is Autism?
When Donvan and Zucker started to research the topic years ago, they anticipated finding a general agreement about how autism is defined. Instead, they learned of a dispute that has simmered for nearly 75 years regarding nearly every aspect of the disorder from diagnosis to treatment to a possible cure.

“There’s never been [a definition] that everyone agrees on,” Zucker said in an interview with Northern Express.

Part of the problem lies with the word “spectrum.” As Zucker pointed out, the autism spectrum as defined now “is huge…it encompasses so many people.”

ASD Casts a Wide Net
In the extreme, people diagnosed with ASD may never speak or even learn how to go to the bathroom on their own. However, the other end of the autism spectrum includes such well-known actors as Daryl Hannah and Dan Aykroyd.  It’s thought that if he were alive today, Amadeus Mozart might be diagnosed with ASD since observers in his day said he was almost always physically agitated and, when bored, jumped over tables and chairs and meowed like a cat.

The demeaning terms used at one time to describe those afflicted with the disorder – words such as “idiots,” “maniacs” or “morons” – appear to be not only cruel but also based on bad information.

An accurate, up-to-date definition is important. How can health care providers diagnose, let alone treat, a disorder that defies all description? Also, without a diagnosis, insurance companies are off the hook for treatment coverage.

For now, Donvan and Zucker accept the definition promoted by the support group Autism Speaks that describes ASD as “a group of complex disorders of brain development...characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.”

Murdered, Imprisoned
In a Different Key: The Story of Autism holds nothing back in portraying the disturbing history of autism, including the concept of eugenics, which supports decreasing the number of births of so-called inferior human beings. That dark way of thinking took concrete form in the 1940s when the Nazis killed children who demonstrated physical and mental deficiencies.

Even one of the leading contributors to the scientific understanding of autism, Austrian pediatrician and researcher Dr. Hans Asperger, is thought to have saved his career by “diagnosing” children as autistic – which in the 1940s amounted to a death sentence.

Donvan and Zucker show that practices in the United States, though less extreme, were also based largely on ignorance and fear.

As late as the 1960s, for example, American physicians and psychologists regularly encouraged parents to institutionalize their autistic children. Their reasoning was brutally simple: Put this child away because he/she cannot be helped. Forget this child and have another to “make up for” the defective one.

In large numbers, parents took that advice. That led to disastrous results for their children, many of whom might have learned to lead full lives. Whole families never visited or spoke of their institutionalized child again. Based on three years of working at Parsons State Hospital in Parsons, Kansas, this author can confirm that most institutionalized children never had visitors. Over the years, many of these kids died without family or friends to comfort them. The Asylum Projects Wikipedia entry for the hospital coldly states, “The cemetery holds the remains of about 700–800 former patients. Most graves are marked with a metal tag with the patient’s name only.”

Incurable But Treatable
Only gradually did American parents begin to understand that even if it weren’t curable, there might be ways to treat the disorder and diminish its effects.

The Nazi experiment had revealed the true nature of eugenics for what it was – mass murder of the innocent. It also led parents in America and elsewhere to question whether institutionalization made sense.

Old views began to give way to hope, which ultimately turned into social action.

In short, autism began to come out of the closet.

“Refrigerator Mothers”
One of the first orders of business was to dismantle the “refrigerator mother” argument promoted most notably by Bruno Bettelheim at the University of Chicago. Bettelheim maintained that kids developed autism because their indifferent, self-absorbed mothers had failed to show enough love.

With that guilt trip out of the way, parents and researchers felt freer to focus on finding new treatment options and supporting the scientific goal of establishing the neurological, genetic foundations of autism.

Treatment Options Improve
The authors devote several chapters to researchers like Leo Kanner and Bernard Rimland, who devised ways parents and teachers could help mitigate autistic behaviors in kids.

It might not have been their original aim, but Kanner and Rimland also helped create a movement. Parent groups sprouted up starting in the ‘60s and ‘70s. As news media slowly began to take note, private donations, lobbying efforts and state funds for autism research began to appear.

Meanwhile, the argument grew – and became codified in some states – that autistic people deserved help.

Michigan Laws
In recent years here in Michigan, the passage of two measures – the Michigan Autism Insurance Legislation Reform in 2012 and the Medicaid and Michigan Child Autism Benefit in 2013 – has helped make treating children with autism more affordable. Importantly, the 2013 law specifically supports the use of Applied Behavior Analysis (ABA), a system that helps reduce significant behavioral deficits.

Zucker, who is the mother of an autistic child, called ABA the “gold standard” of treatment.

Autism Clinics on the Rise in Michigan
The same legislation has also led to the growth of numerous clinics across Michigan, including the Traverse City-based Autism Centers of Michigan, a clinic that focuses entirely on Applied Behavior Analysis.

“We work really hard to decrease the impact of the three main symptoms: language and communication development, social skills and restrictive, repetitive behaviors,” said Krista Boe, board certified behavior analyst and clinical director at the center.

When asked by parents, she acknowledged that ASD is still incurable.

“But that’s not what we focus on,” she said. “We work every day to defy that concept to some extent. We just don’t get stuck on that.” 

Challenges Remain
For all the progress that’s been made in the past 50 years, autism’s causes remain unknown. Autism remains for life. Another problem is that most treatment options and research efforts focus on children and young adults.

In a Different Key: The Story of Autism makes it clear that adults with ASD need more attention. Donvan and Zucker conclude that for most adults with autism, “There are few opportunities to work or to continue their education…Most literally go on living in their childhood bedrooms, as long as their parents are alive.”

Tickets to National Writers Series events can be purchased online at Cityoperahouse.org, at the box office at 106 East Front Street in Traverse City or by calling (231) 941-8082.

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