A Personal Account

My neighbor, David (I'll call him that to preserve his privacy), was recently hit by a car on a bike ride. He's okay. He's on crutches now.

He has Down Syndrome, though different from autism. He was one of my first friends in sixth grade, entering a public school knowing literally no one.

It comes to question on whether things would be different if he wasn't hindered by his cognitive ability.

Of course, right?

However, he is a child, just like I am and just like any child peddling on his bike down the street haphazardly. It could happen to any of us.

It's only so much more sickening because it happened to someone who honestly couldn't know better.

Psychological Question on Autism: A Parents' Guilt

In the recent Treyvon-Zimmerman and Casey Anthony's case, court cases have surfaced. Some of which have come to light again are news stories about parents murdering their children with autism.

...Why is this happening?

It has been speculated that the recent spate of parents who have murdered their children with autism (and in a couple of instances, taken their own lives as well) have succumbed to the pressures of an unyielding society that values perfection and normalcy. It is a powerful and seductive lure when parents of children with autism are promised "recovery" for their children; but examples of kids with autism completely fading their so-called autistic traits are rare. Can you imagine the tremendous guilt imposed on the parent whose child with autism is not making significant advances while enrolled in programming that proffers a "cure"? Many parents belabor what they could or should be doing differently to support their child.

Know the child best, trust your parental intuitions, rely on your gut feelings, and follow your heart in discerning what is right and true and good and kind. Murder and suicide are not options; the world needs people like your child in it -- magnificent gorgeous human beings who can teech us tolerance, patience, compassion, and acceptance of diversity. (William Stillman.)

Psychological Question on Autism: Passion to Romance

A concerning question to parents of autistic children is whether or not their child will be able to develop romantic relationships one day, especially if they have an intense passion for a particular subject.

A child's passion may actually be the catalyst that develops a relationship into romance. Remember the importance of trying to connect a child with someone who shares his passion? Well, romance requires just one other person; and one person is all it takes to found a loving, pleasing, mutually satisfying relationship that may progress into longetivity.

You may have heard people's strong areas of special interest referred to as a "labor of love." Love is the tie that binsd, and a mutual love can conjoin two people in the context of a shared passion. THis makes sense when we consider the ways in which anyone typicall develops a romance; it's usually through vocational, avocational, educational, or relationship contacts. There's no reason why the same couldn't hold true for a child with autism, and his passion makes a logical starting point.

Psychological Question on Autism: Autistic Homosexuality?

Although it seems like an obvious question, it's still pondered: can someone be autistic and gay?

The answer to theis question is the same as asking if someone who is born blind can also be gay. Or born with cebral palsy. Or with green eyes and albino skin.

Yes.

Human sexuality is a grayscale as broad and diverse as that of the autism spectrum, and virtually anybody can be gay. A child's budding homosexuality requires compassionate sensitivity to support him to tame and and educate him on personal disclosure in the same ways you did about disclosing his autism diagnosis -- both are natural human experiences.

April: Autism Awareness Month

This is a CNN video in honor of Autism Awareness Month. It is a series of clips of children, teenagers, and adults with autism and what they have to say about their experience with autism.

It is truly inspiring--

One of the good things about it... that like you think differently than other people. And being different is okay.

It gets in the way of my thoughts. It gets in the way of learning. It gets in the way of having friends. And it gets in the way of having fun.

Autism cannot and will not stop me.

Don't judge these people! You're not me.

What causes autism: Chinese Take-Out?

A chemical imbalance, contributed by inherited genes and environmental factors, causes autism to develop. Many neurotoxins have been tested in relation to autism: pesticides, flame retardants, or pet flea shampoos. One which has not been studied as intensely is perflurooctanoic acid (PFOA, also known as C8), an acid covering fast-food or to-go containers to prevent liquids from leaking found in hamburger wrappers to Chinese take-out Styrofoam boxes. Research shows that if PFOA accumulates in the umbilical cords of babies, it may retard their growth and brain development.

What causes autism: An Overview

William Stillman, from The Autism Answerbook, outlines the general causes to this tangled and unsolved question. However, The Autism Answerbook was published in 2007, and thus by now it is outdated in light of the recent discoveries.

Autism is a result by a general chemical imbalance. The causes to this imbalance are many, but two are generally debriefed below.  

Genetics.  Autism's are tangled and many undiscovered; "Autism is not a disease, but a syndrome with multiple nongenetic and genetic factors." (2) The most compelling point [is] genetic susceptibility." For example, he explains, "there's a 3 to 8 chance of having a second child with autism, and a 30% greater likelihood that identical twins will be autistic than fraternal twins." Additionally, "autism is four to five times more common in males than females." (3)

Aside from probability, inheritance also may also increase autism's expression. By 2012, much research has been done to confirm that genetics does indeed play its role in autism's manifestation. However, also by 2012, the rate of autism's diagnoses (needs to be specified as thus), has experienced an exponential increase which cannot only be held accountable by genetics. Genes do not change that fast. 

Environmental Factors. To also account for the exponential increase, scientists have pinpointed some environmental conditions which could lead to autism's development. 

To name a few: 

• viruses (3)
• mercury preservative (3)
• Thimerosal (3)
• mumps-measles-rubella (MMR) childhood vaccine (3) 
• pregant mothers' exposure to toxic pollutants (3)
• household products (2) -- chemicals and cleaning products
• polychlorinated biphenyls (2)
• lead (2)
• brominated flame retardants (2)
• pesticides (2)

Sources: 

1. The Genetics of Autism (http://www.ncbi.nlm.nih.gov/pubmed/15121991) 

2. New Study: Autism Linked to the Environment (http://www.scientificamerican.com/article.cfm?id=autism-rise-driven-by-environment)

3. The Autism Answerbook by William Stillman

Potentially Autistic: Anonymous

I know a dear boy who will go by the name, Timothy, to protect his anonymity. He's turning thirteen this year and I've known him for all of my life. His family and my family are particularly close. I've spent my childhood with Timothy. During the summer months before my age was double digits, my brother and I would literally camp out in his house in a play tent we all shared, living the entire day in that tent on solely crackers and ham. 



After finishing The Autism Answerbook a month ago, I have been noticing certain behaviors that Timothy has that before, I just ignored. Now gaining knowledge of their attribution for autism, I'm beginning to question some things I had always overlooked.


-- Timothy often doesn't share eye contact in conversation. Personally, I know I don't do the same. Sharing prolonged eye contact feels uncomfortable to me, but Timothy's eyes often wander and sometimes, don't even look up to mine. I've learned that while we normally assume lack of eye contact with lack of attention, Timothy does listen to every word I utter. Research has shown though that "if a child is compelled to maintain direct eye contact, he may not be hearing a word, but if your child appears not to be listening, he is most likely absorbing nearly everything you are saying.


-- I often feel like Timothy is a cartoon character in his mannerisms and his speech. Though he is turning thirteen this year, he is still very immature. We watched Arthur throughout our childhood and he still does. Sometimes, I often feel like he has adopted Arthur's mannerisms. For example, he'll interact with his younger sister the same way Arthur interacts with D.W. Additionally, his speech is very similar to Arthur's -- the formal, yet reasonable tone, saying "you know" a lot, just like Arthur had. It seemed like his character was based on a character on the television.


Additionally, Timothy is very much absorbed in his video games. As far as I can remember, he has been completely obsessed. He would repeat things that Mario and Luigi would exclaim, or shout phrases from Call of Duty (sans explicit words). This video game obsession seemed typical for a boy, especially in the world we live in today. And his tendency to act like the characters -- I simply dismissed it as child role-playing, just like I had wanted to be Mulan as a young girl. 


At first, I had dismissed Timothy as just being a normal and innocent boy. However, after reading this question, I began to consider otherwise: "What do I do about my child's habit of repeating things that characters in video games, commercials, and cartoons say?" The answer says that this adoption of personas is a building block to cultivate functional spoken language. And perhaps, with the help of a therapist, that functional language can be achieved.


-- Timothy has always been scared of loud noises. Now, I don't want to stereotype, but often, boys of his age enjoy explosions and "boom!" of sorts. However, since he was young, he cower at the sound of fireworks, fire alarms, police sirens, and vacuum cleaners. Even now, he plugs his ears at these sounds. Perhaps he is simply audio sensitive, or perhaps, he experiences "sensory sensitivities," a common criteria for autism. It is "uncomfortable, painful, or upsetting sensations you receive in reaction to sensory stimuli that are beyond your tolerance threshold. 


-- Timothy's handwriting has always been awful. In the Vietnamese culture, handwriting is truly treasured, perhaps for its calligraphic style of writing in the homeland. His parents have always made him practice handwriting on those dotted line sheets, even up until now. Still is handwriting is only borderline legible. Autism addresses a difficulty with handwriting, known as dysgraphia. It is the "inability to produce discernible handwriting, and may include elements of dyslexia due to numbers and characters being reversed, out of sequence, or written upside down." The scientific explanation would be the inability for brain-body connections to successfully interact.


-- Timothy used to and still has a very limited diet. As a child, his diet consisted of fried chicken and fries, cheese pizza, and chocolate chip cookies. Today, he has improved, eating tofu and rice, spaghetti, broccoli on the side. The "answer" addresses that "eating only a very limited diet is a common experience among children with autism" as they have a "very limited palate"(from their sensory sensitivities). 


I've only covered half of the Timothy's noticed characteristics and only half of the book in explanation. However, I feel like this is ample enough to consider potential autism. Albeit, I am a researching high school student and perhaps these characteristics I have noticed are simply warped interpretations I've contrived in my eagerness to learn more about autism. Perhaps the strict diet is simply just a boy being picky. Perhaps the illegible handwriting is simply a lack of artistic ability in that particular subject. Or perhaps it is something much more. 

The Autism Answerbook: More than 300 of the Top Questions Parents Ask

In conducting this independent study project, I have learned many signs and effects of autism. I finished a book titled, "The Autism Answerbook," which I had mentioned on here before.With a subtitle, "More than 300 of the top questions parents ask," it is a self help book for parents who have or potentially have an autistic child. It has twelve chapters which addresses different topics and within each, it organizes its discussion by a series of questions, each followed by an answer. 


I had picked this book to gain another perspective on autism. Although most of work is research based, the parent side of the autism debate is important to consider since they are the ones who personally interact with the child every day. Their response is the most accurate since their interaction is natural and daily. 

Manhattan Floating in the East River Mural

"Manhattan Floating" is Seth's largest project to date. Consisting of 104 individual 16" x 24" panels, painted in Acrylic. It premiered at Time Equities building (55 E 5th Ave in Manhattan) November 9th 2010. 


Visit Seth's website for more information and more beautifully vivid art pieces: http://www.sethchwastart.com/

"An Unexpected Life:" Part 1

I have spent all the free time I've had in the last two days (which sadly, isn't much since we had some family events throughout this weekend) reading "An Unexpected Life." 

This book is transforming. Written by Debra Chwast, her narrative chronicles the life her autistic son has led so far (as he is in his mid-20's) from the struggling child to a successful and prominent artist he is today. Additionally, as I had mentioned before, the book is filled with Seth's paintings and art pieces which help create a time line of his life through his works. 

His mother, Debra, is an absolute inspiration. Although my copy of the book is highlighted with inspiring quotes, there's a few which still resonate in my head. Here is one: 

At eighteen, Seth had a formal vocational evaluation that determined he was best suited to a career in dry mopping. There we were in that dusty little office where Seth had just completed a three-day evaluation to determine his potential for employment. all that work, all those therapies, all those hours that we and other had devoted to him -- with all that he could do, the result was dry mopping? I said I would die first. (page 13) 

Contradicting a predicted career as a janitor, Debra Chwast gave Seth a life of which many would dream. After her first attempt to give Seth a "normal life," she brushed that aside and decided upon a new goal: to give Seth a "good life." From page 14 and so on until page 120, Seth blossoms as an artist, traveling the world and being featured in national and international exhibitions. And of course, his art pieces from each show trail along with her narrative. 


However, throughout her push and struggle to give Seth a "good life," she reveals much about autism and addresses the three characterizations of autism from the dictionary.com definition. 

• "impaired communication" 
• As explained in the definition of autism (which will be further explained in a later post), Autism is a disorder of, generally, communication. A person with autism is withdrawn within themselves and often has trouble communicating. In the book and in especially the chapter titled, "New Friends are Everywhere," Debra Chwast tries and succeeds to surround Seth with people of all ages and cultivate communication in him. She talks of his mentors, high school and then college students who volunteer to spend time with Seth, his first friend Adam, his second mom, Amy, and the people who've accepted his offer to email him. All these people help take Seth of the "internal world" autism created. 
• "excessive rigidity" 
• The "rigidity" which usually characterizes autistic kids is escaped by his talent -- art. His art gives him a creative outlet. Rather than create a rigidity, she creates this passion for the boy. In an episode, he passionately wants to paint a decapitated boy and a girl with limbs off due to a roller coaster accident and at first, his mother was apalled to at his desire. However, he refused to paint or talk about anything else. This mentor urged Debra to let go and see where it took them. The painting wasn't gory at all, but just a symbolic representation of the tragedy. In her own words, this was a way for Seth to grieve, rather than a depiction of "rigidity."
• "emotional detachment" 
• By surrounding him with people, Debra Chwast gives him emotional relationships. This can be seen with Amy, a girl between Debra and Seth's age who becomes a close, close friend of the family and finally, will take care of Seth if anything should happen to Debra. In ecstasy, Debra quotes her son, who calls Amy, "his second mom." 

Thus, in this biography, Debra not only tells an inspiring story, but also gives advice on therapy and coping with the autism. After all, she experienced it herself first hand. 

Punishment

"And how are we, the stewards of the autistic, doing? When Seth was a teenager, a soon-to-be senile, nationally prominent psychologist said, 'You've tried everything else to get him to speak. Why don't you try punishment?' If one question could make the universe weep, that one would be a contender. A decade later, it continues to resonate inside me. Because that impulse exists in the world, I feel horror, pain, fear and sorrow for all the autistic children and their families and for everyone who cannot defend themselves." 

 This is a quote from the book, An Unexpected Life, I had posted about earlier. 


Seth's mother's response to such a suggestion pretty much encapsulates my feelings right now -- how many autistic children, much less people, have been abused in such a way? It seems naive of me to think that the world is just dandy. And I've learned of abuse afflicted upon people with disabilities, but to realize punishment was a medical therapy to promote communication in autistic children honestly sickens me. 


To hear a supposed "nationally prominent psychologist" suggest to attack a defenseless child is vomit-inducing and tear-jerking. 


Perhaps I'm being a bit too harsh consider this was, as written, ten years ago, before much knowledge was known about autism and people did not know what it was or how to deal with the disorder. 


However, a resentful, terrifying, and once again, seemingly naive question which dwells in my mind is that, how much talent and curiosity has been suppressed due to ignorance? 

"An Unexpected Life" and "The Autism Answer Book"

These are two books I bought today from Barnes and Nobles:

• An Unexpected Life by Debra Chwast



Sorry, it's sideways. I haven't learned how to rotate the pictures on Blogger yet. 

• This book is a personal account of "a mother and son's story of love, determination, autism, and art." What really enticed me into this book is, childishly, the pictures. The book is a narrative that is also filled with artwork the son had created, his unique talent (another unique manifestation of autism.) The book tells a story through the mother's words and through her son's art pieces. 
• The Autism Answer Book by William Stillman
• This book is written in an Q&A format -- simple and easy to read. The questions address autistic issues and general "need-to-know" about autism for parents. 

These two books are more focused on the social category of autism as they address a personal relationship with autism and a generic parent's overview of autism. 

Meeting with My Mentor: November 15, 2011

My mentor for this project is Dr. Cearley, a pediatrician at a local hospital. 

My first meeting with her went well -- we exchanged contact information, paperwork, and further details about the project. 

Going into the project, I had realized that it'd probably be beneficial and more than necessary to narrow down my topic. To truly delve into Autism is astonishing. There are so many aspects like I had mentioned in my last post: "the science behind their disorders, the therapies, and their ways of coping and overcoming them." 


Dr. Cearley broke these topics down to two generic categories: scientific and social aspects. 

• Under science would be the manifestations, the diagnosis, the development, and then the treatment. 
• Under social aspects would be the autistic person's behavior, their relationships, and their learning. 

I'm still undecided on which path I should take and even deeper into that trail, because like I said before, it would be difficult to truly understand all of autism's aspects. 

Dr. Cearley suggested several books to me on different these two categories of autism and she also suggested that I first research on Autism a little more before I turn left or right. 

Plan: To understand a brief overview on both categories on autism before deciding on whether to take the scientific or social approach.

What is Autism?

According to autismspeaks.org, 

(1) Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. (4) It is part of a group of disorders known as autism spectrum disorders (ASD). (3) Today, 1 in 150 individuals are diagnosed with autism, making it more common than pediatric cancer, diabetes and AIDS combined. It occurs in all racial, ethnic, and social groups and is four time more likely to strike boys than girls. (2) Autism impairs a person's ability to communicate and relate to others. It is also associate with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

I'll address this descriptions in segments correlating to the description. 


1. What is autism mean? 


To break it down, I'll rely on word origins. 

The word autism is derived from the Greek word autos, meaning "self." Thus autism is characterized by being introverted, as intentionally withdrawn and lacking 'social reciprocity" due to troubles communicating and unintentional disregard for social norms. 


From a more scientific and physiological (rather than psychological) perspective, autism is a common irregularity contrived from the body receiving signals transmitted by the brain, resulting in disconnects and misfires. 

2. How is autism characterized?


And from this characteristic of communication difficulty, many other attributes emerge: 

• Difficulty making eye contact, appropriate facial expressions, body language, and gestures 
• Challenged in developing friends and prefers to play alone 
• May talk, but finds difficulty starting or continuing a conversation socially 
• Physical speech impairment or delay during growth 
• Unusual language use; for example, using third person to refer to himself or repeating words and phrases 
• Engaging in strict routines, and upset if they are disrupted 
• Has a strong and intense preoccupation with certain item or topic -- a talent and passion

3. How was autism developed in terms of knowledge and statistics? 

Autism was discovered in 1801, when a French physician, Jean-Mark Gaspard documented the earliest account in The Wild Boy of Aveyron and since then, more and more studies and discoveries are being made concerning autism. In fact, this issue has become a point of concern, why does it seem autism is being heard more often than earlier and does this mean the number of children with autism is increasing? 

The answer to the first is that since 1994, when the publication of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM), it created a reference tome and more abundant, common, and standardized knowledge concerning psychological disorders. Now, children who were previously classified as mentally retarded of something else were identified with autism.

In 2007, the federal Centers for Disease Control and Prevention (CDC) cite that nearly "500,000 individuals under age twenty-one" are autistic and that doesn't even account for the adults with autism today. But to conclude the second question, it is unknown whether the rise in statistics is a result of proper diagnosis or genetic, social, or environmental factors. 

4. What is the "Autism Spectrum Disorder?" 


The spectrum disorders refers to 5 variations of "pervasive developmental disorders" which correlate to different degrees of manifestation of autism, from very functional and nearly "normal" to noncommunicate. The 5 are (which will be addressed individually in a later post): 

1. Autism Disorder (or Autism)
2. Asperger's Disorder (or Asperger's syndrome)
3. Rett's disorder, 
4. child disintegrative disorder
5. pervasive developmental disorder - not otherwise specified (PDD-NOS) 

What is Autism: A Dictionary Definition

au·tism

   [aw-tiz-uhm]  Show IPA

noun

1.

Psychiatry . a pervasive developmental disorder of children,characterized by impaired communication, excessive rigidity,and emotional detachment.

2.

a tendency to view life in terms of one's own needs and desires.

This is according to Dictionary.com Unabridged

Based on Random House Dictionary (c) Random House, Inc. 2011

An Introduction

Hello there!


My name is Thaonhi and I am a junior in high school. For my 11th grade year, my English class is taking a year long study on whatever our passions are -- whether they be cancer research or the art of juggling. 


So welcome to my year-long research on autism! My interest in autism is inspired by people around me. At school, there is a special education class I often see in the library, in hallways, and in the cafeteria. My neighbor and dear friend, David, has Down Syndrome. My three cousins, Tyler, Ricky, and Ivan have autism while my cousin Emily has Asperger Syndrome. And walking in the supermarkets or down the sidewalk to the Baskin-Robbins, I see people who have a unique mental functioning. 


On a day to day basis, we encounter such inspirational people who. despite their setbacks, succeed in the most incredible ways. My goal with this project is learn more about these mental disorders, especially Autism Spectrum Disorder (ASD). I hope to understand  the science behind their disorders, the therapies, and their ways of coping and overcoming them. 


Wish me luck and feel free to join me on this journey. 
Thaonhi