On Monday, April 2nd, people around the world celebrated Autism Awareness Day, and the entire month of April is Autism Awareness Month. As autism is the fastest-growing developmental disorder, with more than 3.5 million people diagnosed in the United States alone, we thought we’d shed some light on some of the facts, misconceptions, and varying degrees of Autism Spectrum Disorder.
Autism is a word with Greek origins which essentially implies a meaning of an “isolated self.” The word was first used around 1911 when a Swiss psychiatrist named Eugen Bleuler characterized certain symptoms related to schizophrenia under the term.
It was during the 1940s that researchers began to use the term to describe what we now identify as Autism Spectrum Disorder, around the same time that Hans Asperger was observing the disorder in Germany. For many years, into the 1960s in fact, autism and schizophrenia were considered correlated, and only in the last fifty years have researchers begun to understand ASD as a separate and self-contained condition.
So What Is It?
Autism Spectrum Disorder (ASD) is a broad term that describes a wide variety of social and communicative behaviors and delays. It is a complex developmental disorder that presents with varying severity and symptoms in each individual affected by it, hence the term “spectrum” in its name.
Due to the greatly disparate symptoms and severities of ASD, several diagnoses which used to be considered separate disorders are now included under the overarching autism diagnosis. These other diagnoses most notably include Asperger syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS).
Usually a diagnosis of ASD indicates that a person’s functional abilities are affected by their disorder on a daily basis. However, because autism is a spectrum disorder with such varying degrees of effects, some people with ASD may be highly-functioning and require little daily aid, while others may require much more in-depth care and assistance.
In the end, what all symptoms have in common under ASD is a social or communicative aspect. Usually characterized by a set of patterns of behavior, and social and/or language developmental delays, autism can begin to show itself in early childhood and affects individuals throughout their lives.
What Causes It?
Unfortunately, no one really knows the answer to this question. It is generally accepted that autism is a neurological phenomenon caused by abnormalities in brain structure or function, however the cause of these abnormalities is less evident.
Leading researchers are primarily investigating principles of heredity and genetics in the search for an identifiable cause of ASD. No one gene has yet been linked conclusively to the development of autism, but researchers are now expanding their search to try and identify certain segments of genetic code which may be involved in causing the disorder.
There is also research being done to determine whether problems during pregnancy or birth, or environmental factors such as viral infections or metabolic imbalances, may influence the development of ASD.
Important research is being conducted worldwide on the growing phenomenon that is Autism Spectrum Disorder. Projects like SEED (the Study to Explore Early Development), the ADDM (Autism and Developmental Disabilities Monitoring) program, and studies conducted by the National Institute of Neurological Disorders and Stroke (NINDS) strive to provide insight into this largely misunderstood disorder.
Closer to home, Vanderbilt Kennedy Center is home to TRIAD, the Treatment and Research Institute for Autism Spectrum Disorders, whose mission is to improve assessment and treatment services for children with Autism Spectrum Disorder and their families while advancing knowledge and training.
We know that certain risk factors do increase a child’s chances for developing ASD, including pre-existing genetic conditions such as fragile-X syndrome or tuberous sclerosis, certain medications and substances taken during pregnancy, the age of the parents, and a history of autism in the immediate family.
With regard to the common suspicion that vaccines cause autism in children, the CDC comments, “To date, studies continue to show that vaccines are not associated with ASD.”
While we do not know its cause, increased incidence and awareness of autism coupled with early diagnosis and intervention are leading to significant improvements in the expectations of people affected by ASD.
What Does It Do?
People with autism generally exhibit delays in social, emotional, and/or communication skills. They tend to be more routine-driven than neurotypical children, and may repeat and mirror behaviors rather than spontaneously producing them. People with ASD may also react to things very differently than expected, and often use alternative learning and communication methods that may seem very different or even unrecognizable to others.
ASD can become apparent in children even in infancy, when babies may show atypically strong focus on certain objects, an aversion to eye contact, a delay in or absence of babbling and early speech patterns, and other very early social markers. Some children with ASD, however, may develop more or less typically for a time, before starting to withdraw, regress, and lose interest in social engagement and activities.
As children grow and social pressures increase, some more distinctive symptoms of ASD usually become apparent. Children with ASD may fail to respond to their names, continually avoid eye contact, and demonstrate a dislike of being touched and cuddled. They may also display reluctant or dysfunctional communication behaviors, especially when it comes to articulating emotions or understanding the emotions and social cues of others.
For many children with ASD, the difficulty of social interaction leads them to choose to play alone more often than not. People with autism may not show any interest in other people, or the desire to engage in social interactions with them. They may fail to notice when they are spoken to, or give unrelated answers to questions. Some people with ASD will talk about a favorite subject happily, but they may not be aware of whether the person they are speaking to is interested in that topic or engages in the conversation.
People with autism may struggle to perceive and participate in common social behaviors. They may have difficulty expressing and/or receiving emotional cues and conversations, and they may not understand or engage in sympathy and empathy with others. More apparently, people with ASD may not pick up on non-verbal cues such as gestures, facial expressions, tone of voice, or body language.
This means that some people with autism may sometimes say something that does not match the expression on their face. Some people on the spectrum prefer to speak in a sing-song tone, or speak with a lack of inflection that sounds unusual to the average ear. They may also fixate on a gesture or imitate it, but not seem to comprehend or use it within its intended context. This can be unnerving for a person who is typically developing when interacting with a person who has ASD, but such differences in communication can be overcome with familiarity and practice.
Autism will also most likely affect the way a child plays and interacts with their environment. They may have a tendency to be hyper-focused on certain types of toys or topics, or on the parts and functions of a toy instead of the toy itself. Many children with ASD will use toys for purposes other than play, choosing instead to sort toys or line toys up, for example, without actually playing with them as intended.
ASD may also show itself in a delay in or absence of pretend play. Typically-developing children will usually begin to pretend play by the time they reach the parallel or associative stages of play – holding toy phones up to their ears and having one-sided conversations, or rocking a baby doll as if soothing it. Children with ASD may only rarely demonstrate this imitation type of play in their own activities, if at all.
Stimuli in a child’s environment shape the way they view the world, and for children with ASD, this is a deeply involved process. Many people with ASD experience difficulty with processing sensory input, so their reactions to sensory stimulation are often unusual, running the gamut between understated or exaggerated awareness of sound, light, taste, sensations, and smells.
This challenge in processing stimuli may also prompt repetitive behaviors in people with autism, known as stimming. The word stimming is related to the word stimulation, and refers to any behavior that humans execute when searching for sensory input. Every human performs little actions like this – tapping a pen or a foot during quiet moments, chewing gum, biting their nails, etc.
However, in people with ASD and other disorders, these little behaviors are often exaggerated or even socially inappropriate. When children with ASD display repetitive behaviors with their bodies such as flapping their hands, spinning, or rocking, they are most likely seeking input from their environment through stimming. Stimming can even show up in verbal behaviors like chanting, singing, prolonged growling or other noises, or scripting (continuously repeating words or phrases, also called echolalia, often outside of any apparent context).
A certain resistance to changes in routine and environment is a common characteristic in individuals with Autism Spectrum Disorder, as is a pronounced difficulty transitioning from one activity to another. Emotional outbursts may result even from what might be considered a minor change in the environment or predicted schedule of a child with ASD.
However, autism is a very unique disorder in that it may also have ties to strengths and abilities that are above average. The CDC reports that 46% of children with Autism Spectrum Disorder demonstrate intelligence that is above average. Some people with ASD have eidetic or photographic memories, or learn and retain information very well. Yet others can excel in areas like math, science, music, or art.
Well, What About Treatment?
Perhaps because the cause has been so difficult to pinpoint, there is no known cure for Autism Spectrum Disorder.
Treatment plans vary as much as the symptoms of the disorder itself. Because every presentation of ASD is different, treatment is usually tailored to the specific needs of the individual. Early diagnosis and intervention is very important with autism – the earlier the better. The likely neurological nature of the disorder means that those early years of rapid brain growth are a critical time for establishing positive habits, developing skills, and forging neural pathways.
In addition to the benefits of developmental therapies detailed in this infographic, -------> behavioral therapies may also be helpful for some individuals. Some families also elect to receive counseling to alleviate some of the pressures associated with Autism Spectrum Disorder and its treatment and effects.
Some families also adopt dietary regimens which can greatly reduce the occurrence of behaviors associated with ASD. These are not uniformly effective however, and each family should consult with a child’s treatment and intervention team to make the decisions that are best for each individual child affected by ASD.
There are no medications to treat the symptoms of autism directly. However, some disorders which may accompany ASD, such as epilepsy and Attention Deficit Disorder (ADD), can be treated with medications as prescribed by a physician.
So What Does Success Look Like?
The biggest advances come in small doses, sometimes. One of our teachers here at High Hopes describes a very important moment with one of her friends with autism – it came when she happened to look up and find this friend looking her in the eye. She hadn’t called the friend’s name or done anything to attract attention, yet her student was making eye contact.
The teacher froze, and smiled, and held that gaze steadfastly until her friend looked away and moved on to a new activity. Although it was simply meeting eyes across a room, that seemingly small experience stands out in her mind as a very important milestone in that student’s journey with ASD.
Another teacher recalls a moment with a friend on the spectrum who was nonverbal and quite rigid when it came to routine and familiarity. This student did not enjoy being touched, did not seek out interaction of any kind, and rarely made eye contact or responded to verbal cues. However, one day while the classroom was involved in free play, that student approached the teacher and took her hand, used it to lead the teacher to the refrigerator, and placed her hand on the door.
The teacher asked if the student wanted a drink from her cup, and after a few moments, her little friend touched the hand that rested on the refrigerator door. When the teacher opened it, the student took a drink from her cup, put it back in the fridge, and returned to play. Such an attempt at communication, minimal though it may appear, was a huge step for this student.
Early intervention and the use of continued supports throughout their lives have been shown to greatly improve the abilities and quality of life in people with autism. Despite its drawbacks, many people with ASD learn and improve skills and abilities that enable them to function fairly well as they grow and develop, and many are also able to enter the workforce and live independently in adulthood.
As we’ve said before: Knowledge is power, and the more we can learn about these diagnoses, the more effective we can be in dispelling stereotypes, providing support, and encouraging the success of the children affected by them. Let’s use the month of April to help spread awareness of the realities of Autism Spectrum Disorder, and to support the people and families who are affected by it daily.
Happy Autism Awareness Month!
 Autism Society. What Is Autism? 2016. Web. 3 April 2018. <http://www.autism-society.org/what-is/>.
 Centers for Disease Control and Prevention. Autism Spectrum Disorder (ASD). 10 March 2017. Web. 3 April 2018. <https://www.cdc.gov/ncbddd/autism/facts.html>.
 National Institute of Mental Health. Autism Spectrum Disorder. 2018. Web. 3 April 2018. <https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml>.
 National Institute of Neurological Disorders and Stroke. Autism Spectrum Disorder Fact Sheet. 6 December 2017. Web. 3 April 2018. <https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Autism-Spectrum-Disorder-Fact-Sheet>.
 Rudy, Lisa Jo. Understanding Stimming: A Common Symptom of Autism. Ed. Joel Forman MD. 20 July 2017. Web. 3 April 2018. <https://www.verywell.com/what-is-stimming-in-autism-260034>.
 WebMD LLC. What Does the Word 'Autism' Mean? 2018. Web. 3 April 2018. <https://www.webmd.com/brain/autism/what-does-autism-mean#1>.
 Autism Society. Facts and Statistics. 2016. Web. 4 April 2018. <http://www.autism-society.org/what-is/facts-and-statistics/>.  Centers for Disease Control and Prevention. Autism Spectrum Disorder (ASD): Data & Statistics. 10 March 2017. Web. 4 April 2018. <https://www.cdc.gov/ncbddd/autism/facts.html>.