By Heather Clower
The Parsons Advocate
Autism. What used to be a sparse population affected by this disorder has grown like wild fire, with new diagnosis daily. However, what most people don’t realize is Autism Spectrum Disorder, or ASD, comes in many different forms.
It is defined as a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated one in fifty-nine children in the United States today, with boys being four times more likely to be diagnosed. AutismSpeaks.org states several factors may influence the development of autism, and it is often accompanied by sensory sensitivities and medical issues such as km gastrointestinal (GI) disorders, seizures or sleep disorders, as well as mental health challenges such as anxiety, depression and attention issues.
As with any diagnosis, family members are always looking for the “why”. According to information on Autism Speaks, genetics play a role in whether a child will or will not have ASD. Parents who have children in their older years of fertility carry a higher risk of their child being diagnosed, and parents who have one ASD child have a two to eighteen percent chance their second will also. A very controversial topic is that of vaccinations. Extensive research has been conducted over the last two decades to determine if this is in fact a cause. However, the website states very clearly “vaccines do not cause autism.” Either way, be it vaccinations, environmental factors, or the hand God deals the parents, there is no cure, but impactful management tools available.
There are typical signs that may trigger a concern in the parent. Some of these early detections are evident as early as six months of age, depending on severity, whereas others may not be obvious until between ages one and two years. The most common traits one reverts to when considering autistic behavior includes little to no eye contact, repetitive behavior, and poor communication skills.
The American Academy of Pediatrics recommends all children undergo an autism screening by their eighteen month or two year well child visit. Tools are available online to aid parents in performing a preliminary screening to show the possibility of your child or loved one of having ASD. However a diagnosis can only be confirmed by a professional physician. Regardless of an ASD diagnosis or just some delayed functions, there are several options for support and intervention, such as Birth to Three, the Family Resource Network, and outside therapy services.
ASD has different levels of severity and is scaled as Levels 1, 2, and 3. Level 1 ASD is considered that of high functioning individuals, or what was formerly referred to as Asperger’s Syndrome. These individuals often work and live independently after learning to manage their differences. Most diagnosed in this category have normal verbal skills but can have difficulty in communicating with others. High functioning autistic people often have very high intelligence and qualify for gifted programs and also exhibit fewer restrictive or repetitive behaviors. Like all levels of ASD, the extensiveness of their impairments will vary and may even be difficult to notice by outsiders. Society must remember that not every disability, impairment, or diagnosis is evident on the exterior.
The severity of the impairments increase in a Level 2 diagnosis and is considered moderate functioning autism. These individuals often require more assistance, but can develop some degree of independence. Difficulty with communication and socializing is more prevalent and often exhibit repetition or the individual may prefer to communicate using signs or technological devices. Self care tasks may become challenging as they often have a normal or below normal IQ and behavior problems often come into play.
Level 3 is noted as the most severe level of ASD as per the DSM-5 manual. Children and adults with Level 3 Autism need significant support and likely cannot live independently. These individuals have severe verbal communication deficiency and are often non-verbal. The CDC noted that of those diagnosed with ASD, 40% are actually non-verbal. These individuals also exhibit impaired mental or cognitive functions and behavioral extremes. Once a routine is derived it often leads to behavior issues when that routine is deviated from.
Sonya Bible, resident of Davis and mother of an autistic child, offered the following advice regarding autism. Expect the unexpected. It is overwhelming at first, but you learn as you go. It affects everyone in different ways, and if you ever don’t know, it’s best to just ask. There are parents who would love to explain to you what is going on, just please don’t judge.
By now most of you know my husband Daniel and I chose to home school our children, Paityn who is eight and Wyatt who is five. What most of you probably don’t know is one of the reasons why. When Paityn wasn’t even two years old, we noticed how intelligent she was. She didn’t play like most kids her age; rather she categorized zoo animals by species and even grouped the felines far away from the birds because “kitties eat birdies.” Before turning three, she was completing puzzles rated for children ages five and up in record time and memorizing church hymns. At age four, when starting preschool at home, initially approached as a “see how it goes” with homeschooling, she already could count as high as you’d ask and knew her entire alphabet and the sounds each letter made. After six weeks using a typical four to five year old workbook curriculum, our daughter was reading small stories. We knew she was intelligent, but being our first we had no idea just how smart and gifted she really was. After speaking with my husband and grandparents, Bob and Wanda Freeman, we decided to begin a kindergarten curriculum with her to challenge her more.
Outside of academics though, we noticed some “quirks” Paityn exhibited. She had no balance or coordination, and when spoken to she took everything extremely literally and could not understand jokes, sarcasm, or expressions. She was extremely social, made friends easily, and made eye contact, things most children with autism don’t do. Her core strength was so poor, she could ride a horse with ease yet she couldn’t sit at the table in a chair without arms without falling out several times. Sports were a complete disaster. Everything we tried ended in tears and frustration, both for her and us.
As most concerned parents would, we began our own research and everything kept leading us to learn how much more autism involves versus the typical perceptions. After speaking with her pediatrician, he understood our concerns and referred us to seek screening at a Morgantown location. After five hours of testing, the physician provided us with her findings. Her words echoed over and over to me, “Everything points to autism, but because she’s so social and makes eye contact she can’t have autism.” This bothered us. Autism, or any other diagnosis for that matter, is not a cookie cutter per say, meaning God took a mold and said these people will have this diagnosis so they all must fit into this category. We definitely understand that our situation is quite minimal compared to families with loved ones expressing level 2 or 3, making it less noticeable to the general public.
For the next twelve months, we continued our research, took notes, read medical journals, recorded incidents of concern, and so forth. When meeting with our pediatrician for the next well child visit we shared these findings. His words stuck with me even more than the diagnosing doctor. “Parents know their child best, go with your instinct.” Daniel and I knew what we needed to do.
In May of 2016, we travelled to Johnstown, Pa. for a second opinion. This physician listened to our every word, looked at our videos, took notes, and reviewed our findings of our own research, anything you would hope someone would do. We filled out every form of paper screening a parent could do while he performed a clinical screening with Paityn. A few weeks later, he called us to provide his findings via phone. He admitted, yes she is very social and makes eye contact well. She has a genius level IQ and qualifies for gifted programs if she would attend public school, however he had a solid validation to diagnose Paityn with level-1 autism, formerly known as Aspergers Syndrome, Disruptive Mood Dysregulation Disorder (DMDD), Anxiety Disorder, Sensory Processing Disorder (SPD), and Attention Deficit Hyperactive Disorder (ADHD). He explained how he arrived at his diagnosis, and relating her reactions to certain situations and stimuli, and we had our “aha moment”. All of a sudden everything made so much sense. It’s not that this changed anything for us or made situations any easier, but there’s a comfort and satisfaction in knowing as a parent. No, we have never used it as an excuse for unacceptable behavior from our daughter or using it as a way to get handouts. What it does do is give us an understanding and access to tools to help her manage her differences when they arise.
Paityn receives occupational therapy services weekly in Bridgeport. We utilize the methods and techniques learned there at home to help the other six days of the week. Home school has continued as we as a family felt this was the best option for her because of her needs. This also allows us to work at her pace, where she is actually finishing up third grade, a little over a year ahead of where her age puts her. I am sure a lot of people by now are wondering what we did that caused us to give birth to an autistic child. The answer is nothing. I don’t smoke, do drugs , prescription or recreational, I wasn’t near any nuclear power plants or any other “causes” you may relate autism to. We did vaccinate. Do we think that is to blame? No. We vaccinated both our children. Our daughter, the one with the least likelihood of being autistic, is the one diagnosed. Our son, the one with the biggest chance of having ASD who is also vaccinated, does not. It’s the hand God dealt us and for that we are grateful.
Just recently, during a reading lesson, Paityn was to memorize a bible verse and write three things she considers a blessing from God. Her answers were as follows: 1. My bro 2. Level 1 autism, and 3. A good family. I read this over and over again. I asked, “Paityn, do you consider your level one autism a blessing?” Without missing a beat, she looked at me with her typical sass and said, “Well yea!”
Is it hard at times? You bet. Do I absolutely despise autism? Of course I do. My heart breaks for every individual stricken with the diagnosis especially those with more severe levels. Do I wish for it to be removed from our daughter? I do not. Autism is not who my daughter is. It does not define her in the least bit. She is your typical sassy eight your old drama queen who participates in gymnastics, hip-hop and tap dancing, loves to attend church, help on the farm, and rides her pony.
Daniel and I have never shared this story before, but with April being Autism Awareness Month, we wanted to express to others our personal connection to the cause. If our daughter who has to wear headphones to the WVU coliseum events because of the volume, has to leave an indoor horse show because of the camera flashes bothering her, or has to ask us in a crowded store to stop and do her therapy techniques because she is overwhelmed looks at her autism as a blessing, maybe we can all learn something from her.
For more information on autism or to contribute to the cause, please visit www.AutismSpeaks.org or take the pledge and go blue the month of April.