Article By: Nicole Johnson
Article Date: 04/02/2008
Autism is a neurologically based developmental disability that seriously affects a person’s communication, socialization, and decision making skills. Typically noticed in children by age three years, it affects males four times more than females. It is conservatively estimated to occur in at least 12 million people globally, without respect to racial or ethnic background. The incidence of autism is sharply on the rise. In the late 1980’s, autism was reported to occur in 2-5 persons per 10,000. In 2001, the rate of occurrence is reported in some areas of the United States at 1 in every 250 persons (Debbaudt 16). The chances of your child being diagnosed with autism today are 1 in 150.
Ten years ago, I was incredibly uneducated about autism. Realistically, I didn’t even know what it was. When my triplet brothers were three years old, their learning abilities were noticeably regressing. Their vocabulary seemed to be diminishing, and they stopped making eye contact with others. By the age of four, they were diagnosed with autism. Getting over the initial shock of the news proved to be difficult, but I felt the need to help my family as much as possible. I was surprised to find out that the local library offered limited resources and books on autism. Every week I left there dissatisfied and disappointed. It seemed as though everyone felt it was acceptable to make guesses and assumptions as to what causes autism. The books I would read would imply that autism was caused by bad parenting, or dairy and wheat products. Authors would suggest that autism starts in the womb, and not after the child is born, therefore it must be genetics.
Richard Lathe, author of Autism, Brain and Environment, stated that no one seemed to know what causes autism or how to effectively treat it. Autism is difficult to describe, though trained clinicians say it is as distinctive as a sunset or a symphony. Some disorders are easily defined by markers, such as the extra chromosome found in Down syndrome. Others can be ascertained by numerical values: for example, of blood pressure in the assessment of hypertension, or of blood sugar in diabetes. No essential markers have yet been identified in autism, and none may exist (20). None may exist? That certainly does not bring comfort to my family. However, that statement is true. Although the numbers are significantly rising in autism diagnosis, finding an autism specialist is difficult, due to the lack of factual knowledge. When you are the parent of an autistic child, you have to settle on a neurologist. Chances are, the most your child’s neurologist can do is ask many questions about your child and discuss what medications your child should be on.
Over the past ten years my brothers have been on the following medications: Risperdal, Abilify, Zyprexa, Seroquel (all used to treat schizophrenia and bipolar disorders), Depakote (used to treat epilepsy and bipolar disorders), Clonidine (used to treat high blood pressure), Fluoxetine (used to treat depression and obsessive compulsive disorder), and Adderal (Used to treat ADHD). While it is necessary to have them on medication, my family often wonders what the dangers are of mixing medications and if the side effects outweigh the benefits. It can be quite frustrating, because although the medication can decrease the symptoms of autism, what we are really praying for is a cure.
Lately there have been discussions, reports and debates on whether autism is linked to immunizations, specifically, the Measles Mumps and Rubella (MMR) vaccination and vaccinations containing mercury or thimerosal. This can be a very touchy subject for some people because when you start considering the fact that your child’s autism or neurological disorder can be caused by immunizations, it can bring about a major public health disaster. But if it’s written it off completely, then the parents or family members are denied proof that they seek.
The Centers for Disease Control and the American Academy of Pediatrics have issued a statement asserting that “the available scientific evidence has not shown thimerosal-containing vaccines to be harmful.†Their statement is false. Thimerosal, a mercury-containing substance that is used as a preservative, is said to be harmful and to be a highly probably causal factor in autism (Bernard 56).
For years my family has been ridiculed. Strangers stare, neighbors avoid us and extended family comes around less often. It’s as though people who don’t understand, really don’t want to understand. Maybe they are afraid of knowing the truth, or feeling like they must apologize. Maybe they will feel pity but not want to feel it. Or perhaps they compare autism with a different neurological disorder making autism seem less severe.
There are certain facts about autism that you can find in a book, such as basic indicators and criteria. But if you want to take an actual inside look at what it’s like to have an autistic child in your family, you’d have to read a book written by a family member.
My brothers turned thirteen years old last month. Each one of them has his own personality. Trakkor is considered the most severely autistic with the mind of a three year old. He has walked on his tiptoes his entire life, has a very small vocabulary, and points to things he wants. He will eat ketchup on absolutely everything including cookies, and will insist on wearing the same shirt every day. He will not tell you he wants to wear the shirt; he will just dig it out of the laundry basket. If he cannot find the shirt, he will refuse to get on the school bus and will have a complete meltdown. A meltdown for Trakkor consists of biting his forearm, pinching his nipples, soiling his pants, throwing himself on the floor and hitting himself in the face until his nose bleeds profusely. During the meltdown he must be physically restrained to avoid further injury to himself or harm to others. Once he is partially calmed, putting him into a warm bathtub is a positive sensory tool to which he reacts well. There was an incident that would have turned your stomach, had you been a witness. Trakkor had physically hurt himself so bad that he was covered from head to toe in blood. He had to be washed down outside with the hose. It looked like a scene from a horror movie.
Tanner is the second most severely autistic, even though he seems to retain knowledge better. When you ask him if he wants something he will either say “No thank you†or repeat the question if he wants it. He loves hot sauce and will drink it from the bottle. Tanner seems to be highly affected by his medications in a negative way. He experiences many side affects including muscle tics, frequent crying, and very unusual behavior. When he is agitated, he will pace back and forth, jabbering words you cannot understand. Yesterday he paced back and forth through the kitchen, and when I listened closely enough, I realized he was reciting lines from “beauty and the beastâ€. When Tanner has a meltdown, he will physically attack men, strangers and elderly people. He will also spit and scream in your face. Because his meltdowns are brutal, he is given a Clonidine. When it starts to take affect, Tanner begins to cry. One time during a fit, tanner climbed the fence in the backyard and ran from home. I drove around the entire neighborhood looking for him. My mom called the Anchorage Police Department (APD), and he was found thirty minutes later at the local Fred Meyer. When I arrived to pick him up, he was in handcuffs. Defensively, I raised my voice to the police officer demanding that the handcuffs be removed. The officer explained that Tanner had been climbing the shelves in the warehouse and had attacked many customers, therefore making the handcuffs necessary.
Harley is usually the most well behaved of the three. He smiles a lot and dances around the house. If you turn on the radio, he will dance. One thing that Harley loves to do is to get your attention by doing something he knows he should not be doing. When you ask him to stop, he will laugh and continue doing it. When he does have a hard day, he is usually stimming off of his brothers. Stimming is a term used to explain when a mentally disabled person is over stimulated by something or someone. When Trakkor and Tanner are misbehaving or having a rough day, it will put Harley into a negative mood. During his meltdowns, Harley likes to break things. He doesn’t normally try to cause harm to anyone, he just thrashes around throwing things and stomping on them. About a year and a half ago, Harley got into some medication and overdosed. My mom called me panicked and by the time I got there, he was close to being unconscious. The ambulance arrived, gave him oxygen and hung around until he was alert. We figured out that he had taken 19 Clonidine.
Alaska Office of Children’s Services (OCS) ordered my mom to put all medications into a locked box and then keep it in a safe hidden place. They were also told to eliminate most of the gas cans that were kept in the back yard due to the boys huffing gasoline.
Over the years, people have come to be a little more understanding about the boys. The neighbors used to call the cops constantly when they would see one of the triplets in the front yard without shoes on, or jumping on the trampoline in the backyard with only their underwear on. OCS was making regular visits to my mom’s house after the boys were recovered from their estranged father’s home, malnourished, emaciated, dirty and neglected. That was 7 years ago and OCS has recently closed the case. When a new neighbor moves in and does not know my family, the dirty looks and glares start back up again and the occasional phone call to APD happens. When the cops show up, they simple say hello, and ask if everything is ok with the Hogan triplets. After confirmation, they apologize for the unnecessary visit but explain that they must follow through with every call.
Sometimes my mom and I will joke around to the neighbors. We’ll casually tell them that they could always move out of the neighborhood if it will make their lives easier. Or we tell them that they can lock their doors during the day if they don’t want a strange child coming in without knocking to pet your dog or play with your kid’s toys. We’ll explain to them that they have to accept the fact that the triplets like to dig their bare toes into the tar on the roads during the summer, accidently ride their bike across their lawn or run their hands along the dirt on a car. Hopefully one day we can convince the city to post a sign in my mom’s neighborhood saying something like ‘Disabled children at play’. Until then, we only ask that people be understanding and maybe make the effort to come and spend an hour or two with my family so that they can see what it is really like to walk in our shoes. My brothers can be warm, happy, loving and sweet. They can be an absolute joy to be around. They are unique and special in their own way. They didn’t ask for this disability. They didn’t ask to be different. They didn’t ask to be treated as outcasts. They just want to be loved and cared for. They just want you to play with them, hug them, cover them with kisses or just shake their hand and ask ‘how are you today?’ I wish for one day I could get inside of their heads and see what it feels like to live with autism everyday. It is not me who suffers, nor my mom, nor my sisters. It’s my brothers who suffer. They live with this everyday of their lives, trying to fit in, trying to understand why God made them this why, why they were chosen.
Knowing is not enough; we must apply. Willing is not enough; we must do (Goethe)
Works Cited
Bernard S, Enayati A, Redwood L, Roger H, Binstock T. Autism: a novel form of mercury poisoning.
Med. Hypotheses. 2001 Apr;56(4):462-71. PMID: 11339848
Debbaudt, Dennis. Autism, Advocates and Law Enforcement Professionals : Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders.
Philadelphia, PA, USA: Jessica Kingsley Publishers, 2002. p 16.
http://site.ebrary.com/lib/chartercollege/Doc?id=10064484&ppg=16
Goethe, Johann Wolfgang Von
http://www.brainyquote.com/quotes/quotes/j/johannwolf161315.html
Lathe, Richard. Autism, Brain and Environment.
London, , GBR: Jessica Kingsley Publishers, 2006. p 20.
http://site.ebrary.com/lib/chartercollege/Doc?id=10156032&ppg=20