By Cardinal Scruggs
Winter 2016 Kaplan Award Winner
At the age of four, my twin sister was diagnosed with Autism. Hearing the news from the doctor, left my parents upset, confused, and fearful for their daughter’s life. What is Autism? How do we cope with this? How will our daughter be treated? These were some of the questions that were surrounding my parent’s minds while they were in shock. As a twin brother, I was too young to understand what was going on. At the time, we lived in a peach colored house in Seattle that sat parallel with other houses on a busy street, which led from I-5 to Lake City. Prior to the diagnosis, my mom and dad noticed signs of abnormal behavior in my twin sister, such as spinning in a circle and staring at a light for a long period of time. However, they never thought that it would be a disorder that will change their daughter’s life forever.
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Autism is a mental disorder that is often associated with intellectual disability, attention/physical health issues, and difficulties in motor coordination. According to research conducted by autismspeaks.org, every 1 out of 68 children are diagnosed with Autism. This disorder is also known to be four times more common among boys than girls. The number of boys that are diagnosed with Autism is 1 of 42, while the number of girls diagnosed is 1 out of 189. In other parts of the world, tens of millions of individuals are affected with Autism. In recent years, diagnosis for Autism has increased 10 to 17 percent. Unfortunately, no one knows the cause for this vastly increasing disorder.
Usually, doctors and other medical personnel are able to detect signs of Autism in early brain development. Signs and symptoms of Autism are commonly found between the ages of two and three. The earlier the diagnosis, the better the chance that parents have to seek treatment such as behavioral therapies, which can tremendously improve their child’s mental functioning abilities. Autism ranges on a spectrum from being mild to severe. A person with mild Autism, is known to be high functioning in terms of being intelligent. However, he or she is socially impaired and experiences sensitivity to crowds, noise, bright lights, strong tastes, and smells. These experiences lead to anxiety, depression, and other mood disorders. On the other hand, an individual with severe Autism, is identified as low functioning. These type of individuals suffer from mental retardation, epilepsy, and extremely limited receptive/expressive language skills. Last but not least, low functioning autistic people tend to need more assistance and sensory activities than high functioning autistic individuals. Fortunately, my twin sister has high functioning abilities.
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Living with my twin sister has been quite challenging over the years for my parents and I. She wasn’t aware of the dangers of touching certain things such as wall outlets and stove tops. Also she would climb on top of countertops to reach for something that sparked her interest. If the front door wasn’t locked, she would run off, causing my mom or dad to have to catch her just in time, before making contact with the busy street of oncoming cars. Oftentimes, my parents would have to lock up cabinets, drawers, doors, and baby proof everything. Having a child and sibling with Autism required a lot more supervision. As a working parent, my mom would often rely on close family members to watch my sister and I. Eventually, my mom began calling agencies that offered caregiving. Hiring caregivers became difficult in terms of finding a proper fit for my twin sister. Sometimes the caregivers did not work out, which led to repeating the process. Another issue of living with someone who has Autism would be communication. My twin sister was non verbal which meant that she could not talk. Not being able to tell us what she wanted led to frustration and lots of crying. Eventually, the Seattle School District advised my parents to enroll their daughter in EEU: The Experimental Education Unit which is located behind the University of Washington Medical Center.
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In school, my twin sister received training in EEU that focused primarily on speech therapy and other skills such as putting toys away. Meanwhile, a community resource person would come over twice a month to inform and help my parents with setting up files and folders, regarding information on resources and programs for my twin sister. From kindergarten to second grade, my sister learned and used the PECS system for communication. PECS is a picture exchange method used for nonverbal autistic individuals like my sister. It consists of a binder with dividers, Velcro, and pictures of objects, food, activities, and emotions that are cut out and laminated. Then they are organized into categories and the Velcro is used to make contact between the laminated icon and the space on the divider page. In the PECS system, my sister would look through the binder, pick out what she wanted, and hand the icon to the person whom she was interacting with. However, she was still frustrated and did not enjoy using the picture exchange method as her primary way of interacting. In the third grade, she was taught sign language by a teacher’s aid in her class. Immediately, she picked up on it and began eagerly teaching my parents and I some of the signs at home. Unfortunately, my parents weren’t able to find a professional that would help them to learn sign language. It wasn’t until high school when a para educator drew the signs on paper for my parents and I to learn. My sister was fascinated in learning the colors and numbers. She would sign them to us and we would practice the signs that she showed us, until we got them right. In school, everything went well for my twin sister until middle school.
The transition from elementary school to middle school was difficult to adjust to. My mom and dad felt that the Auburn School District should have provided prior visits to the middle school for my sister, so that she can get used to the new surroundings. Instead, she went straight into middle school not knowing anyone, not being familiar with her surroundings, and having to adjust to a new schedule. Changes are challenging for anyone who has Autism. Usually, an individual with Autism like for everything to remain the same in terms of the people they interact with and the environment that they are a part of. The teacher would call my mom often to come and pick up my twin sister due to behavioral issues. Instead of attending school for a full day, she was going for a half day. This left my parents upset and irritated, going to the authorities to complain. My mom immediately hired a legal person who was known for fighting for the rights of people with special needs. After a meeting, they discovered that the school was doing many things wrong in terms of dealing with my sister. Eventually, changes were made and my sister was back in school full time. In high school, she continued to learn sign language and was taught independent living skills. Academically she was doing well and her behavior improved tremendously.
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In the Seattle Community and surrounding cities, the public’s reaction to Autism can vary. Some people may be understanding and sympathetic, while others may be harsh and heartless. When my sister and and I were younger, our parents took us to see a movie at a movie theater in Seattle. My twin sister was making noises and was climbing underneath the seats. People with Autism do not know or understand the social/community norms and protocols for how to conduct oneself in public. As a result, we were asked to leave. Another time, when we were older, my dad took my sister to Taco Time for lunch. He wanted to eat lunch with her inside, but she was making noises and wouldn’t sit still in her seat. Therefore, the look on other people’s faces and her behavior, made him leave the restaurant embarrassed and upset without ordering any food. Overtime, my parents and I have learned that there are certain public places that are not suitable for autistic people. Whether an individual has mild or severe Autism, they do not function well in very noisy and crowded environments with bright lights. Instead, we try to take her to small restaurants and stores that have a calming atmosphere and that don’t have so many people.
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As a person with Autism gets older, the availability of resources begins to decline; especially here in the state of Washington. The transition from childhood to adulthood can leave many parents frustrated and in fear for their child’s future. My dad says that some states are better than others in terms of treatments and programs catering to special needs. He states, “In the past, Autism is a disorder that was not talked about. People just don’t know what to do about it.” This it quite true! Each year, more and more children are being diagnosed with Autism, but yet no ones the cause. There has been speculation that immunizations could be the cause. Yet a cure has not been found. It appears that after an autistic person turns eighteen, services such as day programs, visits to a neurologist, and other medical/state services are taken away. Even if there are programs available for special needs adults like my sister, my parents state, “These programs don’t train and hire the right personnel to deal with someone like our daughter.” Personally, they feel that placing her in an institution would lead to her being taken advantage of, living in isolation, and being mistreated. Therefore, like many other families who are affected by Autism, my parents would like to keep my sister in the home as long as possible, due to a lack of trust in others A couple years ago, after my sister graduated from the independent living program in high school, my parents took her to visit a program called Full Life in Kent. It was a day care program for adults with special needs. After the visit, it appeared that she liked the program. Therefore, my parents enrolled her. There was an active class that was a bit noisy and a calm and quiet class that she chose to hang out in. On the first day of her enrollment, my parents and I sat back and observed my sister and her caregiver to make sure that everything was going smoothly before we left to go to lunch. Upon our return, we found out that she had hit the caregiver and ran outside, not listening to anyone. The incident was a surprise to us because we thought everything was fine. The next day or so, my dad received as call from Full Life stating, “Your daughter isn’t a good fit for the program. We don’t have the staff to monitor her.” This left us frustrated and disappointed thinking that we had finally found a program that was suitable. Had the caregiver maintained better control of the situation and had the people that worked there, knew how to deal with her, my sister would most likely still be attending the program. Still worried about their daughter’s future, my parents are living day by day, hoping that something good comes along. Luckily, they have guardianship so that they are in control of the decisions for her.
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In the Seattle community and surrounding areas, there are many things that can be done to improve the livelihoods of those who have Autism. For starters, my mom says, “We need to create more programs that will help adults with special needs feel like they are a part of the community. Also they need somewhere to go to hang out with their peers for socialization” Unfortunately, there is not enough monetary resources available to provide enough programs and activities for special needs adults. Another thing that will make a difference would be training and hiring people who are deeply interested in working with clients who have Autism. Many bypass in home care and day care opportunities due to economic/income inequalities. Last but not least, a special school should be created to offer educational programs and skills that teach adults with special needs beyond high school. Even though my sister was able to stay in high school after graduation to complete an independent living program, that is still not enough. Since completing school, she has regressed in some of the things that she has learned. Adults with special needs should never stop learning. I believe that they would benefit even more by being enrolled in higher education programs. As for myself, I created a Facebook page a few years ago, to bring awareness to Autism. On my page, I talk about the challenges, misconceptions, and underlying issues regarding Autism. Also what it is like having a twin sister who is autistic. My Autism page is still active to this day.
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In closing, Autism is a disorder that many people can relate to. There is always someone who knows someone who has Autism. From early diagnosis, to dealing with it in the home, in school, to the public’s reaction, to finite resources available, and to what we can do to help, we as a community cannot sit silent and inactive in the lives of the vulnerable. People with Autism and other disorders, cannot defend themselves, are sometimes mistaken for a violent person, and are misunderstood. Therefore, those of us who are fortunate to have a voice and to live a normal life, have to speak for those who cannot. As a twin brother, I am my sister’s voice. I am there to watch over her, defend her, and protect her. Day by day, we take my twin sister out into the community around other people, at various places and events to ensure her happiness and well being. Autism is not a disease nor should we deprive our affected loved ones from living life.
Resources:
Autismspeaks.org
Telephone Interview with mom on March 14, 2016
Telephone Interview with dad on March 14, 2016