Autism

 

Note: This post is a day late. My apologies.

In my novel True Mercy, I wanted to give people a glimpse of the stresses and challenges involved in caring for a loved one with autism. It is a difficult undertaking, particularly when the individual is low to moderate functioning. The character Adam in True Mercy was somewhere between low and moderate. I portrayed him with many telltale signs like communication difficulties, behavior quirks, obsessive interests, and little or no social skills. But there are individuals who are at the highest functioning level they possess these traits, and yet are able to integrate into society, even thrive. The highest functioning people with autism are labeled as having Asperger’s Syndrome and they live and work among us. I would like to mention five individuals considered to have high-functioning autism or Asperger’s:

1. Dan Aykroyd is a comedy actor, most famous for starring in films like The Blues Brothers and Ghostbusters. He was expelled from two schools for acting up before a doctor diagnosed him with mild Asperger’s Syndrome.

2. Steve Jobs was the former CEO of Apple. Many now believe Jobs was on the autism spectrum because he had an obsession with perfection and he lacked empathy for other people, both symptoms of autism.

3. Albert Einstein was a scientist and mathematician. He had difficulty socializing. As a child, he had speech delays and echolalia, which is repeating people’s words. He was known for his trait of being extremely technical. These characteristics have led many experts to speculate that Einstein was on the autism spectrum.

4. Charles Darwin was a naturalist, geologist, and biologist. Psychiatrists believe he may have had autism because he was extremely quiet and avoided social interaction as a child. He preferred to communicate by writing instead of speaking. He was also fixated on certain chemistry topics.

4. Emily Dickinson was a poet. Experts conclude she had many characteristics to demonstrate she was autistic, among them she was a loner, was socially awkward, and had a fixation with scented flowers.

I want to conclude by mentioning that anyone who displays any of these characteristics should not automatically be labeled on the autism spectrum. A neurologist is a doctor qualified to make this diagnosis. But experts who have studied the behaviors of these famous people no longer living have speculated they were very likely on the spectrum.

Following President Trump’s State of the Union address on January 30th, the Autism Society Public Policy and Advocacy Newsletter wrote about their concerns regarding the President’s failure to mention any policy initiatives for people with autism and other disabilities in terms of housing, education, employment and other supports. Members of the Autism Society fervently hope the President will include aid for job training, family supports, and health care for these citizens in the upcoming government budget, which is scheduled to be released to the public in a few weeks.

The newsletter included an alarming proposal from the Center for Medicare and Medicaid (CMS), which called for reducing penalties for nursing home violations of health and safety standards.

Although President Trump is trying to reduce the government budget in an effort to cut taxes and boost the economy, he cannot sacrifice the needs of the country’s most helpless and vulnerable citizens. Nobody asks for disabilities and families already struggling to provide for their special needs loved ones do not need additional challenges. If the President is committed to helping families, he ought to include those who must take care of loved ones with special needs as well as those residing in nursing homes.

This past weekend my family and I sold my novel True Mercy at the Woods Winter Wonderland Market in Langhorne, Pennsylvania. Woods is an educational and residential center for individuals with various disabilities, including autism, brain injury, developmental disabilities, emotional and behavioral challenges and Prader-Willi Syndrome. It was founded in 1913 by Mollie Woods, a Philadelphia teacher who began the school for children with special needs. Woods is now a 350-acre campus and services 700 residents.

While selling my book, I observed a warm community environment with fun activities for all, including pony rides, face painting, and holiday lights. Booths were set up selling holiday crafts by local artisans and a choir sang holiday songs. Vendors served food and warm drinks.

I spoke about one of my novel’s goals as giving readers a peek into the stresses and challenges of taking care of a loved one with autism. Despite the hardships, these individuals have a sweetness and innocence that others find endearing. Adam, the eighteen-year-old character with autism in my novel, always managed to put a smile on people’s faces as he played an instrumental role in saving a woman’s life.

Everyone had a pleasant day at the holiday market and I was pleased to talk to so many people about True Mercy.

Book Review: Grant by Ron Chernow

In the ranking of Presidents, I had always learned that President Ulysses Grant was ranked one of the worst. However, after reading Ron Chernow’s thoroughly detailed biography, I came away with a different perspective. Before becoming the general leading the North in the Civil War, Grant was a failure at every business venture he undertook. But he never gave up. After leading the Union army to victory, he became President of the United States and had a mixed record: Grant displayed great bravery in trying to protect newly-freed black slaves in the South and defeating the Ku Klux Klan, yet he naively surrounded himself with corrupt cabinet members. He had a tendency toward alcoholism but spent most of his life overcoming his addiction. Grant himself was an honest man, but his judgment was often flawed in maintaining loyalty to close friends who betrayed him. Despite his shortcomings, I came away with the utmost respect for Grant as both a brilliant general and an upright man. A life of many failures and successes, he demonstrated that luck can change.

I put together this sheet that I bring with me to presentations of True Mercy. I hope readers will find it informative. 

Note: As everyone can understand, life is very busy. With editing my new novel, marketing True Mercy, and improving my website, I have decided to post articles on my blog every other week instead of once a week. 

Autism Spectrum Disorder (ASD) is a developmental disorder that is marked by two unusual kinds of behaviours: deficits in communication and social skills, and restricted or repetitive behaviours.

Symptoms include the following:

1. Aversion to displays of affection and a preference for solitary play
2. Speaking later than norm
3. Speaking in a robotic tone or an exaggerated singsong, odd tones or speech patterns
4. Limited eye contact or limited use of gestures to communicate a need to describe something
5. Monopolizing conversations while showing little capacity for reciprocity or understanding

Restrictive or Repetitive behaviours:

1. Repeating actions and rituals
2. Fixating on minute details
3. Troubled by changes in daily routine
4. Putting toys in order instead of playing with them
5. Consuming interest in a specific topic or object

Information is taken from “Quick Facts on Autism” from Child Mind Institute

Statistics

• Autism now affects 1 in 68 children
• Boys are four times more likely to have autism than girls
• More than 3.5 million Americans live with an autism spectrum disorder
• About 40% of children with autism do not speak. About 25%-30% of children with autism have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood.
• Autism greatly varies from person to person (no two people with autism are alike)
• The rate of autism has steadily grown over the last twenty years
• Autism is the fastest-growing developmental disorder, yet most underfunded
• Children with autism do progress – early intervention is key

Two Common Myths about Autism:

• Individuals with autism are not affectionate. Not true. Although they may be oversensitive to touch, they can and do show affection.

• Individuals with autism are not interested in social interaction. Actually, while they often struggle with knowing how to make and keep friends, they do like people around and are capable of interacting socially, but they need to be explicitly taught the hidden social rules.

Information is taken from the National Autism Association, Autism Society, and we-care.com (blog)

Those familiar with autism have most likely heard the term “stimming.”

In my novel True Mercy, Adam, the eighteen year-old with autism, often stims. Here are a few examples:

1. “Adam flapped his hands excitedly when he saw the Pizza Craze sign.”
2. “Both his hands were above his head shaking in the air.”
3. “Adam walked around in circles, hitting his head with his hand while mumbling, ‘What should I do? Should I call Daddy? Do I look for a doctor? What should I do?’”
4. “‘Daddy, when can we see Marina?’ he asked, pointing his index finger in the air.

‘When can we see Marina?’ Bruce now repeated his son’s own question to him.

‘When she finishes talking with the police,’ Adam replied. He stared out the side window for ten seconds before turning to his father again.

‘Daddy, when can we see Marina?’ he asked, pointing his index finger in the air again.”

But what is exactly is stimming?

According to Wikipedia, “Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autism spectrum disorders.” 

According to the American Psychiatric Association, stimming is one of the telling symptoms of autism. They go on to list examples in Diagnostic and Statistical Manual of Mental Disorders, : “Other common stimming behaviors include hand flapping, rocking, excessive or hard blinking, pacing, head banging, repeating noises or words, snapping fingers, and spinning objects.”

Many therapists have concluded that since individuals with autism are extremely sensitive to stimuli, this behavior serves as a protective response when these individuals encounter unfamiliar and unwanted external stimuli. Others believe it is used as a vehicle to relieve anxiety and other undesirable emotions.

Many individuals who do not have autism also stim. For example, in a stressful situation, some people bite their fingernails or tap their foot. However, they have enough control to stop stimming in circumstances when there isn’t appropriate, such as on a date or in a job interview. For those with autism, however, they don’t have the same control over their stimming, may not be aware of the effect it has on others, or find it too stressful to stop.

There are stimming behaviors that could cause self-inflicted injuries. These include head-banging, hand-biting, or too much scratching. There are also cases of those who stim on a constant basis. For these reasons, experts seek to find methods to reduce or stop these behaviors altogether by either medication or using an alternative form of stimulation, such as feeling the softness of a piece of cloth instead.

In True Mercy, I strove to portray this common behavior in an individual with autism by depicting eighteen year-old Adam stimming in order to give readers an idea of what they would encounter if they met someone with this neurological disotrder.

Idelle Kursman is the author of True Mercy. Please read and review on Amazon. She looks forward to reading your comments.