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Feature Story
Autism: Shedding Light on a
World of Unsolved Puzzles
by Anna Amodio
In the lobby of a preschool that teaches children with autism, a mother faces her son’s diagnosis as she struggles her three-year-old through the door way. “Jimmy’s” blonde hair is tussled by his mother’s efforts to soothe away his tantrums, and his screams protest this unfamiliar place. Red-faced with stress and embarrassment, Jimmy’s mother hurriedly brings her eyes to mine to silently apologize and simultaneously implore my assistance.
I quickly introduce myself, using a calm voice to welcome her to the school and relieve her of her son’s tantrums. Hoping that my smile and words reach her through the sound of his screams, I assure her that Jimmy’s first day will be just fine. I wonder if I am telling the truth, as I attempt to walk him down the hallway while his teeth seem pulled toward the soft underside of his forearm. As I prevent him from biting himself, I bring him to the classroom where he is immediately drawn to a small bin of toy cars. His screaming ceases. Methodically, he aligns the cars on the desk and then hurries them back into their container. Jimmy’s blue eyes, blood shot from tears and screams, seem entranced by this repetitive behavior which seems to create a sense of certainty that regulates his emotions; he is now calm. In order to gain his attention, I attempt to align cars with him, but he only gives up on the task, walks away, and begins to flap his hands in the corner.
During Jimmy’s assessment, I use different volumes and intonations of my voice while varying my proximity to him, but he shows no recognition of his own name. I find that he can hold little to no eye contact. He often directs his eyes at my forehead or my cheek and the fleeting moments that his eyes meet mine seem unintentional. Randomly he sings songs recognizable from popular children television shows, and his eyes take on a glazed-over look as if his memory of a particular episode somehow becomes a thicker reality than being in this room. His words are randomly repeated but are not spoken in a communicative fashion. Jimmy won’t point to the things that he wants, but will often throw a tantrum when a desired object is out of reach. As a teacher, I am prepared for this, but how do parents prepare themselves for the birth of a beautiful child who, as they later learn, may never say “Daddy” or “Mommy” in a meaningful way?
Jimmy is one child that has autism, but every child is different. In fact, many in the field of autism have stated that there should not be autism but autisms, since there is such a wide range of symptom affectation, cognitive levels, and functioning abilities. These varying levels are currently encompassed by the term Autism Spectrum Disorders.
Characteristics of autism can include deficits in verbal and non-verbal communication, difficulty maintaining eye contact, inability to comprehend emotions (of themselves and others), frequently engaging in self-stimulatory behaviors such as rocking or hand flapping, engaging in self-injurious or aggressive behaviors, such as biting themselves or others, and having an increased sensitivity to sensory stimuli, such as certain lighting or particular sounds.
So what causes this disorder? It has been suggested that the levels of mercury found in vaccinations are associated with causing autism. Advocates for vaccines respond by highlighting the failure of researchers to support these claims with evidence. Thimerosal, an ingredient listed on many vaccine containers of the past, is listed as a mercury derivative. However, the amount found in vaccines was so miniscule that most experts believed it to be biologically insignificant. Although there are studies suggesting that even the smallest amount of mercury is harmful to early brain development, there is conflicting research that states that the type of mercury used in vaccinations has no causal relation to autism. So the question lingers: if mercury has no effect on child development, then why does the Food and Drug Administration warn pregnant mothers against eating fish that contains high amounts of mercury? If mercury is considered “harmful to an unborn child’s developing nervous system,” is it really okay to inject newborns with it? Is there such a thing as a safe form of mercury?
Of course, not every child who has been vaccinated has autism. Nonetheless, the Centers for Disease Control (CDC), states that since “July 1999, the Public Health Service agencies, the American Academy of Pediatrics, and vaccine manufacturers agreed that Thimerosal should be reduced or eliminated in vaccines as a precautionary measure. Since 2001, with the exception of some influenza (flu) vaccines, Thimerosal is not used as a preservative in routinely recommended childhood vaccines.” Although these changes have been made, the CDC goes on to further stipulate the lack of correlation between the frequency rate of autism and vaccinations.
Researchers are also discovering a genetic component to autism; many have stated that you are more likely to deliver a child with autism if you have other children with the disorder. Other research suggests that the age of the father may be a causal factor in that older fathers are more likely to conceive children with autism than younger ones. So is there a genetic predisposition that can be brought to the surface by vaccinations containing mercury which can ultimately give a child autism? The research can dizzy you, and while speculation abounds, the true cause for autism is still unknown.
For the most part, when diagnosing children with autism, it is usually more evident that developmental milestones have not been reached by the age of two than prior to that age. This is not to say that earlier diagnoses have not been made; in fact, some children have been recognized as autistic at as early an age as one year old. In most cases, however, parents start to recognize deficits in language development and other characteristics of autism when their child is about two years old—this is also the age at which many children receive their immunization shots. It is quite difficult, therefore, to concretely attribute autism to vaccinations.
What is probably just as frightening as the theories surrounding the cause or causes of autism are the alleged increases in the prevalence of this disorder. According to the CDC, current statistics suggest that autism affects approximately one out of every 150 children. Females are less likely to be born with autism, but it isn’t impossible. Why are the numbers of children affected by autism growing? First we must step back and question whether the numbers are really increasing at all. Some recent criticisms have been made against the statistics which indicate that autism is on the rise. Improved assessment methods have led to earlier and more accurate detections. It then becomes possible that many children who were previously diagnosed with Mental Retardation (MR) may have actually had autism. In addition to improved methods of assessment, it has been insinuated by many studies that the rising numbers are connected to the fact that services are only allotted to children with labeled conditions. Children who have speech delays, for example, may be falsely labeled with autism in order to give them access to free services that they may not have been able to receive without such a diagnosis.
The information regarding autism is an array of puzzle pieces that can be quite difficult to place together. While we wait for some definitive answers, many families are affected by this disorder on a daily basis. What is probably most difficult for parents who have children with autism is the amount of attention that these children often require.
A mother of three-year-old triplets with autism spoke with me regarding her experience. She stated, “things that I once did with ease—that I once took for granted—are not simple anymore. Finding a baby sitter for my sons is difficult. I can’t just make plans with my husband to go out for dinner. It isn’t an enjoyable family night out when I have to calm my sons from their tantrums in a public place. Most people don’t know what autism is, so they look at me like I’m a bad mother. I feel like they are all thinking ‘look at that woman, who can’t control her kids.’ People who have sat close to my family in restaurants have given us dirty looks. They don’t understand. So, we just stay home most of the time. My husband works, and I had to quit my job so that I could take my kids from one kind of therapy to another.” When I asked her what kind of effect autism has had on her marriage she simply said, “my marriage isn’t about romance like it used to be.”
Triplets may seem like an extreme case; however, many autistic children have siblings who have also been diagnosed with this condition . In general, one child with autism can require significant amounts of therapy which can be extremely time consuming. Though the level of attention needed is dependant on the level of the child’s ability, many of these children require constant supervision, especially if they are known to engage in self-injurious or aggressive behaviors. So how can we as a community be of service to these families? A simple trip out of the house can be very difficult for some parents. If you have a neighbor who has a child with autism, you may want to ask if he/she needs anything from the store you are running to. If you are a family member or a close friend of parents who have a child with autism, familiarize yourself with that child. Despite their disorder and the symptoms that can come along with it, many of these children are affectionate, loving, and funny. They have personalities. Some of the strongest bonds that I have ever established with another human being have been with my students. Form relationships with these children, and offer to baby sit on an occasional Friday or Saturday. If you are in a public place, and you see a child who is throwing a severe tantrum, don’t stare at the parents. Obviously, one should never turn their heads from abuse, but what might be mislabeled as bad parenting might actually be an excerpt from the day-to-day battle of a family affected by autism.
As we learn more about this condition, we build bridges of understanding and compassion. Although there is no cure for autism, education and early detection are the best means for obtaining early intervention that can highly influence the quality of an autistic child’s life.
To learn more about autism, visit www.autismspeaks.org. Anna Amodio is a teacher of preschool-aged children with autism. She is currently obtaining a dual Masters Degree in Special and Early Education, with the ambition of creating a practice that integrates holistic healing and various behavioral strategies in an effort to bring peace to families affected by autism. Contact her at amodio846@aol.com.