Autism Definition: The Worlds of Autism

Joshua Caleb was born on September 9, 1992, yet it wasn’t until he was eleven years old that he was officially diagnosed as autistic. For eleven years, his mother Robin searched for answers to explain his symptoms. Although bright, Josh had trouble grasping concepts, making eye contact, adjusting to change, and functioning around other people. As a teacher, Robin knew Josh should be on a higher level socially, physically, and in some ways mentally, and because of this, she kept searching.

Josh is high-functioning autistic: on the outside he looks perfectly normal, exhibiting no outstanding abnormalities. As a freshman, he is currently enrolled in Honors English and Advanced Spanish. Last year he not only made the dean’s list, but he also received the President’s Silver Award. After finishing high school, Josh will be able to attend a university and obtain a job. Most people would never realize Josh is autistic.

Autism is a -social disability and a developmental disability- (Newman 16 August 2006). Because of this, Josh is about three years behind his peers in emotional maturity and thought processing. Missing the normal social nuances most kids take for granted, Josh focuses on the why. Why do you look someone in the eyes? Why do you say hi as you pass a friend?

-He wants friends, but doesn’t understand how to make them- (Newman 16 August 2006); this is probably both the hardest and easiest aspect of his autism. His lack of understanding of the social world gives him the courage to ignore the opinions of others, yet at the same time -keeps them at bay and sends the message that he doesn’t want to be close to people or have friends- (ibid).

Because autism has affected him socially and developmentally, Josh’s autism has also affected him physically. A lack of hand-eye coordination has kept him away from most sports involving a ball; and although he is currently a runner on the track team, he had to be taught how to run. Other motor skills, both gross and fine, were delayed in his development, but sight and hearing are innate gifts he uses to bless others.

Blessed with hands that can fly over a keyboard, an ear that can pick out notes and melodies, and eyes that notice every detail, Josh is extremely talented at mastering the piano and solving puzzles and picture games. Music has always been a factor in Josh’s life and growth. A natural pianist, Josh was performing Mozart and Bach while still in Jr. High. According to Robin, he has -a different way of hearing things that most people don’t.- In many ways, music has become both his friend and his therapy. In fact, for Christmas, when given the choice between a bed or keyboard, he chose the keyboard. A piano is always available and most of his activities focus around practices, lessons, competitions, recitals, and other performances. So even though he sleeps on a mattress on the floor, his piano keeps him content and happy.

Josh’s emotions aren’t always exactly clear, and it can be difficult to differentiate between some of his emotions and to understand whether or not he understands. Although Josh is in an Honors English class, he has difficulty comprehending language in its full complex context: his mind analyzes everything in its literal form. Examples of this can be seen in his reaction, or lack of reaction, to jokes and other forms of humor; most are over his head. Despite his moments of confusion, Josh is ready to display both frustration and joy, just like anyone else.

In fact, Josh doesn’t even register a difference in himself except when someone comments on his autistic aspects. However, when it is discussed, Josh tends to become sensitive and isolate himself further. Not fully comprehending the difference, he has difficulty accepting the fact that everyone is different, choosing to believe that he just has -so many things wrong with him.-

Due to the fact that Joshua has the autism, he also has several side effects that stem from the disorder. There is not strict medication for autism; it can never be cured. Therefore, he only takes medication for his -side effects.- Stratera combats his ADD (although most autistic patients have ADHD Josh has never been hyper) while Clonidine, his most vital medication, treats his Touretts and sleep disorder. Robin commented, -We’d be dead without it.- Besides helping his Touretts, Clonidine is necessary because it allows Josh to sleep in a regular pattern. Without medication, Josh can stay awake for days; unfortunately, his body will begin to shut down and he will become physically ill. Even if his body could function without the medication, it saves his parents and siblings from hearing him play the piano all night.

Joshua is autistic and he will always be autistic; although autism controls many aspects of his life, it is important that it is not his autism that people see, but the spirit beyond his autistic self. His autism has given him courage: courage to face the world despite his problems, and courage to stay strong in the face of adversity. Even though neither he nor the world may fully understand the complexity of the autism disorder, they will see his courage, and that courage they will understand.

Joshua’s case is not unique: autism affects 3.4 out of every one thousand children between the ages of three through ten (-Autism Spectrum Disorders- 26 August 2006), affecting them in three specific domains: communication, behavioral, and socialization (-A Look at the Genetics of Autism- 12 September 2006). However, because there are three different areas of affection, there are several different autistic classifications ranging from severe to mild. Dr. Margaret Bowman, a Harvard professor, while meeting with autistic patient Sue Rubin, said autism -has something to do with how the brain is wired in certain parts dealing with emotion, behavior, memory, and learning– (Autism is a World 2004). Despite the spectrum of disorders, they are all tied together into what is known as Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorder (PDD).

Children are usually diagnosed as autistic before three years of age; however, depending on the severity of the disorder, sometimes it can take ten years before a child is officially diagnosed. Once diagnosed, they are labeled with one of five disorders:

Autism Disorder

Asperger Disorder

Rett Syndrome

Childhood Disintegrative Disorder

Pervasive Developmental Disorder Not Otherwise Specified

Rett Syndrome and Childhood Disintegrative Disorder (CDD) are the rarest of the ASDs. Rett syndrome predominantly affects females; however only one out of 10,000 to 15,000 are diagnosed with this particular syndrome (-Autism Spectrum Disorders- 26 August 2006). Rett Syndrome is caused by a mutation in the sequence of a single gene, yet the results are great. Around eighteen months of age autism-like symptoms appear, only in greater force. Communication stops, movement becomes uncontrolled, coordination and other motor skills are not developing. (-Autism Spectrum Disorders- 26 August 2006)

Childhood Disintegrative Disorder is found in fewer than two children per every one hundred thousand children and unlike Rett Syndrome, CDD is more common among males. The child usually has a regular developmental pattern until the age of four, at which time disintegrative characteristics began to appear in the loss of vocabulary, motor, and social skills. (-Autism Spectrum Disorders- 26 August 2006)

The other disorders associated with autism have similar symptoms but range in severity and the onset of symptoms, symptoms that Sue Rubin described as -killer autism behaviors- (Autism is a World 2004). Common indicators of ASD can be a lack of development in response to name, signals, or vocabulary, loss of language, poor eye contact, obsessive compulsive disorder (OCD), lack of visible emotion, lack of controlled movements, and a lack of hearing (-Autism Spectrum Disorders- 26 August 2006).

Literally translated, autism means -selfism- and describes one of the main symptoms of autism, a social disability (-What is– 21 September 2006). Autistic patients have a strong inclination to be alone, isolated from the chaotic and sometimes confusing world. They give an appearance of being unattached and cold, although the truth is they just express themselves differently. Being slow to develop socially, ASD children have trouble detecting and interpreting their peers. Social nuances such as winking, smiling, or grimacing have little meaning to them and because of this they appear standoffish. Uncontrolled behavior also affects autistic patients socially. With sporadic tendencies to be self-abusive, difficulty in controlling emotion, lack of comprehension of social rules and regulations, as well as frequent loud and sometimes violent outbursts tend to keep others away. (-Autism Spectrum Disorders- 26 August 2006)

Communication is often a standard obstacle autistic patients must overcome. As Sue Rubin stated, -When I wasn’t able to communicate, actually I was a non-person- (Autism is a World 2004). Communication ability varies from individual to individual. Some have extensive vocabularies and can express themselves well verbally; others who possess extensive vocabularies are like Sue and simply do not have the physical ability to verbally express themselves. Still, others have neither the vocabulary nor the ability of voice. Because they lack the social understanding of body language, many cannot use adequate body language to assist in the translation of their mind. (-Autism Spectrum Disorders- 26 August 2006)

Other problems that arise from ASD can be sensory, seizures, mental retardation, and Fragile X syndrome (-Autism Spectrum Disorders- 26 August 2006). Sensory problems can oftentimes contribute to OCD. When the texture of clothes becomes unbearable to feel against the skin, or music becomes painfully loud, the child may find their own way to handle the problem, ranging from screaming to tearing the clothes. Mental retardation may (although not always) also be associated with ASD, especially with Retts or Pervasive Developmental Disorder Not Otherwise Specified. One in four children with ASD experience one or more seizures, which can also lead to mental impairment. Seizures can also be catalyzed by lack of sleep or fever. Affecting two to five percent of ASD patients, Fragile X Syndrome appears when a piece of the X chromosome appears pinched and fragile. Fragile X Syndrome is common with mental retardation. (-Autism Spectrum Disorders- 26 August 2006)

Besides the X chromosome, scientists have narrowed down the cause of autism to four other specific chromosome mutations: 2, 3, 7, and 15. Progressive research is being narrowed to specific genes on chromosomes on 7 and 15. (-A Look at the Genetics of Autism- 12 September 2006)

Because Autism Spectrum Disorders are the result of genetic mutations, there is no cure. Instead, the only treatments doctors have to offer are for the side effects (sleep disorders, Touretts, ADHD/ADD, etc-). Each patient’s treatment plan will vary because each individual varies. The most effective plan will be based on the interests and schedule of the patient.

-This is not my voice, but these are my words-Autism is a world so difficult to explain to someone who is not autistic, someone who can easily turn off the peculiar movements and actions that take over our bodies- (Autism is a World 2004). Sue Rubin’s mission in life is to -bring people into [her] world of autism- (ibid). Autism is not a stigma but a badge of courage. Like any other disorder, ASD patients must face pity, criticism, and ostracism when all they really need is acceptance. They may not be able to communicate, but that should not keep others from communicating back, encouraging them, supporting them, loving them. Joshua, Sue Rubin, and countless others possess a rare courage and spirit that lies hidden beneath an exterior of misunderstanding and helplessness. They may not realize the strength they contain or the deficiencies that stem from their autism, but they can respond to unconditional love in their very own unique, courageous way.

Works Cited

“A Look at the Genetics of Autism.” Exploring Autism (2002) 12 September 2006 .

Autism is a World. Dir. Gerardine Wurzburg. Perf. Sue Rubin, Julianna Marguilies. DVD. CNN, 2004.

“Autism Spectrum Disorders (Pervasive Developmental Disorders).” National Institute of Mental Health 11 July 2006 26 August 2006 .

Newman, Robin. E-mail interview. 16 September 2006.

“What is High-functioning Autism and Asperger Syndrome?.” The National Autistic Society (1999) 20 September 2006 .