Insurance Update
April 2016
Issue No. 67
In this issue
CDC milestones checklists
Our brains are wired differently
Some resources to consider
Long-Term Care Insurance

CDC milestones checklists

 

 

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The intent of this monthly online periodical is to contribute to our understanding of wellness and what it means to live in healthy relationship with God, one another, and our own bodies. This seemed especially relevant when making the decision to focus on the subject of autism for our April issue. April is National Autism Awareness Month, and our research on the subject revealed many eye-opening and inspiring stories. To begin, it's important to note that the recently updated term for this condition is autism spectrum disorder, or ASD. The name preference is explained within this month's articles.
 
Despite the rapidly growing body of medical and psychological knowledge that has characterized our lifetime, there is a great deal about human beings that is still unknown, and remains a deep mystery. The origin and causes of ASD certainly seem to fall under that category. Still, in the more than 70 years since autism was first diagnosed, progress has been made.
 
Maybe the greatest progress has been not in efforts to find its causes or its cure, but in understanding the human reality of the people who have it, and learning from those with ASD how it affects the human mind.
 
In addition to the main article and a list of books and links, you will find a set of PDF checklists that can be used to observe children from ages two months to five years to see if they show any signs of ASD.
 
We hope this issue will start you on a path of understanding. May you be inspired by Carly Fleischmann and Temple Grandin. And may your appreciation and compassion for those with ASD be deepened.
 
Our brains are wired differently


"You don't know what it feels like to be me, when you can't sit still because your legs feel like they are on fire, or it feels like a hundred ants are crawling up your arms," wrote teenager Carly Fleishmann.
 
Carly is a teenager with Autism Spectrum Disorder. Imagine yourself in her body, flapping your hands and flailing about, humming constantly, or banging your head repeatedly. Imagine that your brain is so overwhelmed by sights and sounds that you cannot look at people and have to cover your ears when they talk. Imagine yourself appearing so strange and different that people turn away from you. Imagine yourself trapped in your body without the ability to speak. What would you do if it was upsetting to have your routine change or painful to have someone hug you? Imagine that you are lost deep within yourself.
 
These are all realities that might be experienced by someone with Autism Spectrum Disorder, a condition we often simply call autism. It was first diagnosed during the 1940s by two scientists working separately -- Leo Kanner, an Austrian émigré working at John Hopkins, and Hans Asperger working in Vienna. Kanner was studying the more radically disabling forms of the disorder. Asperger was studying the less debilitating types. Over the years and through all the hundreds of studies and efforts to understand, researchers have come to the conclusion that autism is on a spectrum. On the one end are the  severely autistic people -- deeply mentally disabled, incapable of speech and social interaction, and unable to care for themselves. On the other end are people sometimes designated as "high-functioning" -- they are capable of most of the things labeled "normal," but with some autistic characteristics. People who were once said to have Asperger's Syndrome, named after the scientist, are at this end of the spectrum. There are also people on the spectrum with isolated but extraordinary gifts, once called "idiot savants," now simply acknowledged for their unusual abilities.
 
There have been many efforts to define autism spectrum disorder. One of the best is given by Clara Claiborne Park, the mother of an autistic daughter, in her deeply perceptive and moving book, Exiting Nirvana: A Daughter's Life with Autism (Little, Brown, 2001) . She quotes a British researcher, Lorna Wing, "The continuum ranges from the most profoundly physically and mentally retarded person who has social impairment as one item among a multitude of problems, to the most able, highly intelligent person with social impairment in its subtlest form as his only disability. It overlaps with learning disabilities and shades into eccentric normality ... Language, nonverbal communication, reading, writing, calculation, visuospatial skills, gross and fine motor-coordination ... may be intact, delayed, or abnormal to any degree of severity in socially impaired people. Any combination of skills and disabilities may be found and any level of overall intelligence."
 
The Center for Disease Control and Prevention estimates the rate for ASD in children to be one in 68. Some put it at one in 88. Autism often begins to emerge or to be noted in the second year of life. Parents notice that their child's development unaccountably seems to slow or regress. They become desperate as their child seems to recede from them. The literature is replete with stories of parents in heroic lifelong struggles to help their child, and many different therapies have been developed and tried with varying success. There is no real "cure" for ASD, but there have been remarkable efforts and sudden breakthroughs. Carly Fleischman was thought to be profoundly isolated and retarded until she began to type on a computer. Her symptoms did not go away. She still could not speak. She still flapped and hummed and rocked, but suddenly her intelligence and feelings were accessible to her delighted parents and therapists. She has been able to give remarkable insight into what being autistic is like.
 
"People look at me and assume I am dumb, because I can't talk." Carly wrote. She describes banging her head as, "If I don't, it feels like my body is going to explode ... If I could stop it, I would, but it's not like turning a switch off. I know what is right and wrong but it's like I have to fight with my brain over it. I want to be able to go to school with normal kids but not having them get upset or scared if I hit a table or scream. I want something that will put out the fire."
 
There are other examples of people who began as profoundly autistic children and went on to find lives in the "normal" world. Jessy Park, daughter of Clara Claiborne Park, has been able to hold a job in the post office for many years and is an accomplished artist, though she still has difficulty reading emotional cues and engaging in social interactions. Maybe the most famous and accomplished autistic person is Temple Grandin, who eventually earned a PhD in animal science and became a world-renowned expert on animal behavior, designing and consulting on facilities for the humane handling of animals. Her story of trying to understand "normal" people and live in a world that seemed alien to her is deeply moving and instructive. She came to feel that the workings of her brain and the way she perceived the world had much in common with animal mentality, and she believes this is what has made her so good in her field.
 
For Carly, for Jessy, and for Temple Grandin, progress would not have been possible without the great effort and dedication of their parents and the other adults in their lives. One of the important parts of the autism story is this persistence of parents and therapists. Ironically, the autism saga began with parents being blamed for the disorder. Kanner suggested that autism was caused by emotionally cold and distant mothers and coined the term "refrigerator mothers." For years the immense difficulties of parenting an autistic child were exacerbated by the indignity of being blamed for it. By the late 1960s, research had shown this not to be true, and in 1969 Kanner actually apologized to parents of autistic children.
 
The causes of ASD are still not fully understood. There seems to be some evidence that genetics play a part. There is also evidence that there may be environmental reasons or that certain drugs may be partially responsible. There was the worldwide scare that vaccinations triggered autism. Evidence disproves this connection, but the fear of vaccination is still found in this country and elsewhere. Steven Shapin, a science historian, writes in The New Yorker, "There is now general agreement that autism is a condition rooted in neurological and chemical processes, and that there is a strong genetic component."
 
The truth is that the cause is not known conclusively, nor is there a sure cure. For every Carly or Jessy or Temple Grandin, there are many autistic children and adults who make little progress with their impairment and never have a breakthrough into some part of the "normal" world.
 
In fact, some writers and parents have begun to talk of "neuro-diversity" and regard so-called "normal" people as "neuro-typical." The idea is that autism represents a different kind of mentality, one that might have some larger value. Retrospective diagnoses say that such gifted figures as Newton, Mozart, Einstein, and even Jane Austen and Emily Dickinson, might have been on the autism spectrum, the point being that there is value in regarding ASD not as a disease but as an alternative way of thinking and being. Carly Fleischman writes, "Our brains are wired differently." The mother of a boy with ASD says that she and her husband have decided not to try to change their son but to let him be himself. They still give him special attention, educate him, and nurture him. He needs a lot of help, more than other children his age -- but his parents are not making a constant and unrelenting effort to reshape him and make him "normal." Temple Grandin argued brilliantly in a 2010 TED Talk that there is a practical need and benefit from the different minds of people with ASD.
 
In the years since Kanner and Asperger first identified it, our understanding of autism has grown greatly, therapies have improved, and more importantly, our compassion for the person who has it and for that person's family has deepened. In the 1940s, parents were often encouraged to put their autistic children in institutions where they were forgotten and sometimes forced to live under unspeakable conditions. A child like Carly would never have found her way out of her isolation. So the progress we've made is not just medical or psychological or therapeutic. It's human. We are doing a better job of seeing people with ASD as the human beings they are. And there is no better reason than that for celebrating Autism Awareness Month, and no better example than the words of Carly Fleischmann -- "I am autistic, but that's not who I am. Take time to know me, before you judge me."
_________________________________________
A note: The Carly Fleischmann quotes came from a YouTube video of an ABC news broadcast made when she was in her teens. In subsequent years she continued to grow calmer and more independent. She began a novel. She started a blog and tweeted regularly, answering questions from people all over North America. But symptoms of obsessive-compulsive disorder, something often found in people with ASD, became so strong they were incapacitating. She made the decision to undergo electroconvulsive therapy which sends electric pulses to the brain. This affected her ability to use the keyboard and left her hearing jumbled. She managed to type, "Hi everyone, I am still inside my head, but I am having a hard time understanding people." The good news is that she is recovering. Before her ECT treatment she wrote, "I think the only thing I can say is don't give up. Your inner voice will find its way out. Mine did." She is now 21. Her voice is again finding its way out. In this Autism Awareness Month, may it be so for all people who struggle with ASD.
For your further reflection 
Excerpts from "About Autism: What You Need to Know," Autism Speaks, 2013
Reprinted with permission
 
What causes autism?
Not long ago, the answer to this question would have been "we have no idea." Research is now delivering the answers. We now know that there is no one cause of autism, just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.
Although autism appears to have its roots in very early brain development, the most obvious signs and symptoms tend to emerge between two and three years of age. Often parents are the first to notice that their child is showing unusual behaviors such as failing to make eye contact, not responding to his or her name or playing with toys in unusual, repetitive ways. Sometimes an autism spectrum disorder is diagnosed later in life, often in relation to learning, social or emotional difficulties

What's different about people with autism?
Things that may make a person with autism different can also be seen as exceptional abilities. It is important to think of him or her as intelligent, even if language or behavioral difficulties do not reveal this in the way you expect. Characteristics of someone with autism can be seen as both challenges and strengths. For example, a child who seems inflexible or rigid may also be the one who is the best at following the rules of your program.

People with autism may display some or all of these characteristics:
  • Difficulty understanding language, gestures and/or social cues
  • Limited or no speech
  • When there is speech, it can be repetitive or relate primarily to one particular topic
  • Limited or no eye contact
  • Difficulty participating in back-and-forth conversations or interactions
  • Social awkwardness
  • Intense interest in unusual topics or objects
  • Repetitive behaviors, such as pacing or lining things up, spinning, hand flapping or rocking
  • Sensitivity to light, sound, smell, taste or touch
  • Abnormal fears and/or lack of appropriate fear for real dangers
  • Difficulty managing transitions, changes in routine, stress and frustration
  • Strong visual skills
  • Good rote learning and long-term memory skills (math facts, sports statistics, etc.)
  • Adherence to the rules
  • Honesty
  • Intense concentration or focus, especially on a favorite activity
  • Ability to understand and retain concrete concepts and patterns
  • Strong interest and/or ability in mathematics, technology, music and art
Tips for communication with people who have autism
  • Speak calmly.
  • Use direct, concrete phrases.
  • Instructions should contain no more than two steps.
  • Allow extra time for the person to respond.
  • Avoid using phrases that have more than one meaning, like "cut it out."
  • Avoid touching. If necessary, gesture or gently guide the person.
  • Be alert to the possibility of outbursts or unexplained behavior. If the person is not harming himself or others, just wait for these behaviors to subside.
Some resources to consider:
Find out more about ASD on the Web 
 
National Institute of Mental Health
 
Centers for Disease Control and Prevention
 
Find out more about ASD in these books 
  • John Donvan and Caren Zucker, In a Different Key: the Story of Autism, New York: Crown, 2016
  • Arthur Fleischmann and Carly Fleischmann, Carly's Voice: Breaking Through Autism, New York: Touchstone, 2012.
  • Temple Grandin, Thinking in Pictures, New York: Doubleday, 1995
  • Temple Grandin and Catherine Johnson, Animals in Translation, New York, Scribner, 2005
  • Clara Claiborne Park, Exiting Nirvana: A Daughter's Life with Autism, New York: Little, Brown and Company, 2001
  • Oliver Sacks, An Anthropologist on Mars, New York: Alfred A. Knopf, Inc. 1995.
  • Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, New York: Avery, 2015
  • Chloe Silverman, Understanding Autism: Parents, Doctors, and the History of a Disorder, Princeton: Princeton University Press, 2011
 LTCILong-Term Care Insurance
Any one of us could need long-term care
 
We have just learned how children and adults can be on the autism spectrum, making it difficult for them to function, and necessitating extra care. The need for extra care often returns again once we are older. In fact, as we age there are many things that can put us in need of long-term care.
 
Despite your best efforts, there is always the chance you could suffer a debilitating illness or a disabling accident. And, of course, if you live long enough, the time may come when you just can't do everything on your own anymore. Long-Term Care Insurance makes sure that you will get the care you need. It assures that your medical bills will not eat up your savings. Finally, and this is one of the best things about LTCI, it protects your children and other relatives from having to use their resources to care for you.
 
Brethren Insurance Services offers Long-Term Care Insurance for all members and employees of the Church of the Brethren and their family and friends; and also for employees of Church of the Brethren-affiliated agencies, organizations, colleges, and retirement communities and their families and friends.
 
If you are interested in obtaining this coverage, contact Brethren Insurance Services at insurance@cobbt.org or 800-746-1505 for a free, no-obligation proposal or click here to request more information.