Taylor Wilson Dr.

Braniger CWRRII 4/18/13 Revised Rough Draft Making a Difference in the Life of an Autistic Child It is the middle of summer, the hottest point of the day, and I cant help but to have a smile on my face. I am so happy to be around people that I am with at this moment time. We are taking a trip to the lake. The look on everyones face makes baring the heat completely worth it. Volunteering at camp has always been one of my favorite summer activities, and this day showed why. It means so much to me to volunteer at a camp for children with disabilities, especially those with an autism spectrum disorder. It makes me feel so good inside to help these children, but honestly, I just love being around all of them in general. They are so loving and fun, and that is something most people dont understand about children with autism spectrum disorder. United Cerebral Palsy (UCP) is a wonderful non-profit organization that holds fun, educational camps, parties, and social gatherings for children with disabilities. Now you will get to experience the wonderful volunteering opportunity that I was able to experience. You will love every minute of, even though some of the times, volunteering at UCP can be a difficult and daunting task. By volunteering at UCP, you are within arms reach of the people who work with these children on a daily basis. You are not alone. You will get so much out of this experience, and you wont regret participating for even a second. I am about to give you some very useful information. This information will forewarn you with what to expect when volunteering at UCP. The most important thing you can educate

yourself on before volunteering is the behavior of autistic children, and that is exactly what I am going to help you with. You will be provided with advice based on factors that influence different behaviors in autistic children. So sit back, relax, take a breath, and just realize that you are about to take a step into one of the most rewarding and exciting volunteering opportunities you will probably ever have in your entire life! So what exactly is an autism spectrum disorder? Isnt it just some disorder that kids have that makes them socially awkward, unapproachable, and maybe, at times, mean? Anyone who assumes such things are definitely in for a rude awakening. There is so much more behind the actual disorder than just those few accusations, and it is a daily struggle for children with an autism spectrum disorder. According to an Autism FAQ on the official website for the Southwest Autism Research and Resource Center (SARRC), the term autism spectrum disorder refers to a wide range of developmental disorders and includes five classifications (Autism FAQ, n.p.). Most autistic children are diagnosed with an autism spectrum disorder when they are young. There are several forms of autism. There is the much milder form, which is considered as Aspergers syndrome. There is also a form that is neither mild nor severe, and that is called PDD-NOS. This stands for pervasive development disorder not otherwise specified (Autism FAQ, n.p.). It can also come in a severe form which is simply called autistic disorder. Lastly, there are two very uncommon disorders which are called Rett syndrome and childhood disintegrative disorder. In order for doctors to diagnose children with these different disorders, each specific disorder has a certain list of attributes that the doctors use as guidelines to determine whether or not a child does indeed have the exact disorder. Something that needs to be understood is that the different

characteristics within the spectrum can be similar among the disorders, but each specific case of an autism spectrum disorder that a child has is different from the next and completely exclusive to that child. Undoubtedly, all of this information raises the questions of the cause of an autism spectrum disorder, and if there are any cures out there to help the children suffering from the disorder (Autism FAQ, n.p.). When it comes to the causes of an autism spectrum disorder, at this point in time, there isnt a pinpointed cause. There has been so much researching and studies done to try to determine the cause, but many studies end up showing different results in the end. Some studies show that genetics play a huge part in the cause of the disorder. Other studies show completely different results and suggest that there are neurological and biological differences within the makeup and brain of the child with an autism spectrum disorder compared to those children who are not autistic. There are so many studies looking into the causes of autism; therefore, I am merely mentioning the debate between the causes, but I will not elaborate much. As for a cure for autism, this disorder isnt really something that can be cured. Unfortunately, there is no easy fix, or even a difficult fix. There just isnt much of a fix at all. More common than not, there seems to be some sort of a coping method that can be used to deal with having an autism spectrum disorder. For example, many people have found ways to overcome different aspects of autism spectrum disorders. Children and adults alike have learned to try to get a grasp on the behaviors that may cause problems. This has been achieved or exercised through taking different medications, and also by going to see counselors, doctors, and other professionals who are able to help mentally and emotionally.

An autism spectrum disorder is found to be a disorder that one cant be outgrown. Children with an autism spectrum disorder will have it for the rest of their lives, but like I said before, many have found their own methods of controlling themselves when difficult behaviors come upon them. Many people assume that if there is no cure, then there must not be any medication to help. This is not completely true because there has been, and continues to be, much progress in the treatment of autism spectrum disorders (Autism FAQ, n.p.). It is true that there is no medicine that can magically make all of the neurological, biological, or genetic defects go away and correct themselves. With that being said, doctors often find it beneficial to provide the child with medicine and treatments to help them to get along easier in their normal lives and most experts in the field of autism research and treatment agree that early intervention is essential and critical (Autism FAQ, n.p.). Some medicines can help with the times when the child is dealing with difficult behavior. The medicines also help to handle the other symptoms that come along with having an autism spectrum disorder. Doctors prescribe these medicines in the hopes that they will help the autistic children to live the healthiest and the happiest lives that they can with their disorder. Recently, it has been said that there has been an increase in autism spectrum disorders. It is much more common, and many are wondering why. In a news article about the recent increase in autism, written by NBCs senior staff writer Maggie Fox, she quotes NBCs Robert Bazell who says that the latest numbers from the Centers for Disease Control indicate the biggest increase in autism in occurring mild cases in the spectrum of autism disorders, but it doesnt necessarily mean there has been an increase in children with the neurological changes labeled as autism (Fox, n.p.). In short, Bazell is reporting that there arent necessarily more

children that are developing autism spectrum disorders, but rather more children are being diagnosed. It now estimated that there are about to two percent of all middle school and high school kids that have been diagnosed with autism spectrum disorders. This comes out to around one million children. What is even more startling is that two percent is only in the U.S. It doesnt account for the millions of others all over the world. Fox continues to reveal some shocking facts throughout the piece. She says that the two-percent increase is much larger than previously, but it doesnt necessarily suggest that there are more children that are being diagnosed with autism. In actuality, it is saying that more children seem to be diagnosed with it as they grow older. This is because there is a risen awareness of autism, and there are more ways to help children these days. Fox goes on to explain what autism entails. She tells of different symptoms, and she states that Autism describes a range of conditions and disorders some of which a few years ago were not recognized as conditions (Fox, n.p.). She emphasizes that symptoms can be so mild that professionals, teachers, and parents wouldnt even think that their child might have autism. All in all, Fox is trying to say that the increase in children with autism isnt necessarily because more children actually have it than usual, but the awareness has increased, so more children are being accurately diagnosed with it. Fox cites interviews with professionals on the topic of autism and the increase in diagnoses. The reason professionals and parents alike are saying that so many more children are being diagnosed with an autism spectrum disorder is mostly because there has been a much greater awareness of the actual disorder. More parents and professionals are becoming educated on the topic of autism. Therefore, they are able to assess the symptoms they see in the child and attribute them to the autism spectrum disorder. Another reason that children are so quickly

being diagnosed is that there have been much more services created that can first diagnose the child with the disorder accurately, and then after the diagnoses, there are services that can aid in helping the child to deal with the issues that come with the disorder. Professionals and doctors have been working hard to try to come up with a way to help kids with an autism spectrum disorder. Like most disorders, diseases, or sicknesses, there is the possibility of incorrectly diagnosing someone. There have been errors when it comes to children being diagnosed with an autism spectrum disorder. According to Michael G. Chez, MD, author of Autism and its Medical Management: A Guide for Parents and Professionals, a major mistake in diagnosing autism in very young children is the presence of global delays in gross motor skills as well as language (Chez, 25). This symptom is the symptom of many different disorders and conditions, and it doesnt necessarily always mean a child is autistic. Chez says that parents and primary care providers should not confuse global developmental delay in gait, motor, and speech development with autism (Chez, 25). Chez isnt trying to say that all of these delays have nothing to do with autism. Moreover, he is trying to say that one cannot just assume that autism is the cause of these delays. Chez offers the example of children with cerebral palsy, seizure disorders, attention deficit disorders, Tourettes syndrome, and mental retardation can have the similar delays that autism does (Chez, 25). So to assume the delays point straight to autism would be an inaccurate assumption. Additionally, Chez has done a lot of work on researching autism spectrum disorders, and he has talked to many people about it. He even has friends who have autistic children, and he has been able to use their help in finding out more information on a more personal level. When talking about the diagnoses of autism,

he says that it is a clinical pattern of aberrant behaviors that deviate from normal social and language development (Chez, 27). This shows one of the major factors of autism spectrum disorders and what it is like to deal with a child who has it. Language skills are often poor among autistic children. There is a lack of communication or very little communication at all, if any. This leads to frustration, and quite possible a number of behavioral issues. It is difficult to communicate for children with an autism spectrum disorder, and that in turn leads to miscommunication between child and parent, teacher, doctor, friend, or other. This also can lead to a great deal of frustration that causes behavioral problems. Along with communication, the autistic child in question could have what some like to call selective hearing (Chez, 27). This isnt just a term used with autism spectrum disorders. It is a general, widely used turn. In short, it means that one decides to hear what they want to hear and ignore what they dont what to hear. One example Chez gives of selective hearing is the child choosing to listen to a television, but they dont answer to anyone that tries to engage in a conversation with them. The child will sometimes act as though they are deaf to language but not to other things (Chez, 27). This communication factor is definitely something that would need to be worked on with a doctor or other professional as the child grows older. It is probably pretty obvious to tell from the things I have already said that one of the biggest issues with autism spectrum disorders is behavioral problems. With that being said, there are also a lot of things that have an actual influence on their behaviors. Some of those influences include: school, home, friends, medications, and organizations or autism-related programs where they may have friends and/or mentors. In the book Targeting Autism, Shirley Cohen uses her job, Professor of Special Education at Hunter College of the City University of New York,

to help aid others in understanding and dealing with autism spectrum disorders. She deals with autistic people all of the time, since that is what her job allows her to do. In her book, Cohen is able to go through the different stages in life and explain what each one is like when you have an autism spectrum disorder. She starts with the general introduction of what an autism spectrum disorder is and why it is said to have increased within the last few decades. She then talks about what is like to have autism. Finally, in the third chapter, she gets into different life cycles. She begins one paragraph by saying differences in babies temperaments are apparent even in their first days of life (Cohen, 42), and by this she is saying that it is possible that you can tell something is odd about your childs behavior just soon after they are born. The child can be overly fussy, or the opposite; it may not cry at all. Once the child moves from being a baby into being a toddler, it is very common to see a child who lacks a solid foundation for social interaction and communication, who may well have problems in modulation stimuli, and who may have motor problems as well (Cohen, 46). They keep to themselves and do not get involved socially. Then, once the child reaches the age between young childhood and teenage years, many changes occur. The changes can be difficult to cope with, and the behavior of the child may become increasingly more difficult to handle. There can be animosity and aggression for literally no reason. As time moves on, self-abusive behavior is not uncommon in individuals with autism, although it is not characteristic of most autistic children or adults (Cohen, 58). The aggression builds up inside the child. It is important to look for signs of self-harm in anyone, especially autistic children, in order to get help if necessary. When the child reaches the end of schooling, more changes come about, and they can be very hard to deal with. What Cohen says happens is that everyday routines are disrupted, and any major

change is stressful to people with autism (Cohen, 72), and that can cause problems. Cohen provides a lot of information over the course of these three chapters. She brings in pieces of information from a large amount of other works. She also works daily with people who have an autism spectrum disorder, so she uses a lot of personal experience to help others understand what exactly she is talking about. Often times, people will look to compare a child with autism to a child without autism to see if they notice differences. One mother of twins actually did this unintentionally. In summary, a new mother of twins began to keep an almost daily diary on her observations of her children. She kept track of their developments, sleeping patterns, growth, and how they interacted with other. Everything was generally the same until the twins were about six months old. At that age, she started to notice a difference in her son compared to her daughter. At age three, her son was officially diagnosed with autism. A woman by the name of Mel Rutherford began to study the diaries. Rutherford is a researcher and assistant professor of psychology at McMaster University. She has realized that children with autism develop normally for six months, and then begin developing atypically (McMaster University, n.p.). The twins are now 12 years old, and their behavior is quite different. Rutherford reports that the female twin is doing well, and the male twin is still struggling in different ways, but he is mostly always happy. This article is important because it shows that a child may not seem autistic as a baby, or even a very young child, but that doesnt mean they arent autistic. Autism spectrum disorders have characteristics that are often fairly obvious, but just because each autistic child doesnt blatantly show those characteristics, doesnt mean they dont have a disorder.

When I have dealt with autistic children in the past at United Cerebral Palsy, communication has definitely been an issue, and it has quite often caused behavioral problems. The children often get frustrated if they cannot properly communicate what they are trying to say. For example, if one of the kids tried to ask the adults for something, it has happened that the adult cannot hear them. This has been either because they werent within close enough distance to properly hear what they are saying, or the child is not articulating correctly. If the adult has asked the child to repeat what they have said, the child gets frustrated, and often upset. This causes the child to stomp around angrily, act upset, and possibly even grunt or growl in an attempt to show complete frustration. It is uncomfortable to deal with at times. It is one of those moments where doing something could possibly make the situation better, or it could agitate the situation even more and make it ten times worse. Usually, though, if you just enforce the rules, and tell the child to stay calm, everything can be resolved in a safe and comfortable manner. Lisa Osborne and Phil Reed wrote the scholarly journal titled The Relationship Between Parenting Stress and Behavior Problems of Children with Autism Spectrum Disorders after completing a study over behavioral problems in children with autism spectrum disorders based on parental stress due to the disorder. The probable audience of this journal is for other physicians as well as parents who do get stressed from the ASD. They partook in two 9-10 month long studies that allowed them to study children of all different ages to see if age maybe played a factor as well. Osborne and Reed were specifically curious to find out first the relationship between parental stress and behavioral problems, but also to discover whether the behavioral problems cause parental stress or if the stress from parents caused the child with an autism spectrum disorder to have the behavioral

problems. Their results showed that autism spectrum disorders do in fact have a direct relationship with parental stress, more so than the behaviors of the children with ASD do. They also found that parental stress has a negative effect on the behaviors of children with ASD. Osborne and Reed say that possibly the most likely suggestion is that the high levels of parenting stress trigger changes in the parents ability to patiently accommodate and respond to the behavior problems of their children (Osborne and Reed, 70). I think that Osborne and Reed have both done their research very well. They completed these studies even though it took them quite some time. I think this is important for you to remember while you are volunteering. I think these studies apply to more than just parent/child relationships. While you volunteer at United Cerebral Palsy, it is easy to get stressed out. The volunteering process can be chaotic at times. With that being said, I think these studies go to show that if you show your stress often, it could lead to more behavioral problems with the kids. I feel that the parental stress is relatable to anybody around the autistic children. If you act stressed out because of the disorder, it could upset the children and cause them to act out. I am not saying that you have to hide any sign of stress. I do recommend that you do your best not to take it out on the children. They do their best, and you should do yours as well. Speaking of doing your best, one woman wrote an article on how to be a good friend to those with autism, or parents of those with autism. Kymberly Grosso is a writer for Psychology Today Magazine. She wrote this article for her online magazine, titled Autism In Real Life, where she posts articles related to autism to help parents, families, and friends of children with autism. Grosso has a son with autism, which is the reason she writes these articles. With this being said, Grosso has most likely done quite a bit of research on autism and has first had experience.

In this particular article, Grosso lists 10 ways to help family members or friends that have autistic children. Her 10 ways to help are: being there, discussing autism, realizing there is no look to autism (Grosso, n.p.), discussing the prognosis if that is what the parents wants, dont push too hard with information you find out, offer to have play dates with the children, organizing play dates with neighbors for the child, helping with respite, dont judge, and lastly, keeping whatever the parent tells you in confidence unless advised otherwise. These 10 tips are then described in detail with how to put them into action. In most tips, she explains how a friend doing this tip has helped in her journey with her son. At the conclusion of the article she says that being a friend during good times is easy. Yet it is during the difficult times that we learn who our real friends are (Grosso, n.p.). Grosso is saying that you just need to be the best friend you can be in order to help this person out as much as you can. Grosso says she found out who her real friends were through her life with her son being autistic, and she is very grateful for them. She has clearly been through a lot with her son. At the time the article was written, her son was 12, so he is now 14. 14 years with an autistic child can provide plenty of experience. Grosso knows what she liked and disliked about the way her friends and family handled her sons autism. I find that this applies to working with the children at United Cerebral Palsy. You obviously arent friends with their parents, so some of the tips wont apply. But it doesnt mean that when talking to a parent, or the child, that you cant promise to keep what they say in confidence and remember that autism has no look. There are other influences that cause problems for children with an autism spectrum disorder. One influence recently discovered by a man named Kijeong Jeon. Jeon is a professor at California State University, Chico. His main focus as of

recently has been to see if interior design has an influence on the behaviors of children with an autism spectrum disorder. With his research, he has found that it does in fact have an influence, and with that research, he has made recommendations for classroom teachers. For example, he says that teachers that have students with an ASD may want to stay from the traditional use of primary colors that are seen more intensely by ASD students and opt for more muted hues of pinks and purples, which studies have shown are more favorable (Interior Design May Affect Behavior of Students with Autism Spectrum Disorders, n.p.). He also suggests keeping lids on boxes of toys because clutter disturbs children with an autism spectrum disorder. He also says to steer clear of fluorescent lighting as it reminds the children of a thunderstorm. Children with an autism spectrum disorder see flickering from fluorescent lights that they are extremely sensitive to. Overall, he says the details in interior design should generally be minimal (Interior Design May Affect Behavior of Students with Autism Spectrum Disorders, n.p.). Jeon, as well as his colleagues, have gotten extended funding to continue with their research on all of this. I think this can be useful at United Cerebral Palsy because following some of Jeons suggestions may help to avoid bad behaviors among the children with autism. Picking up messes can help to disturb the children less. Trying to keep muted hues of colors like purple and pink around the building might help as well. Of course, UCP cannot make complete renovations just because of these tips, but following some of them might lead to less behavioral problems with the kids. In addition to the influence of interior design, there is also the influence of friends and peers. I see this quite often at UCP. There are quite a lot of autistic children that go to UCP for camp, but there are children with other disabilities and disorders there as well. Like you and I, there are people we just dont get along with

for any apparent reason. Imagine that, but imagine the intensity of the situation is about doubled. These children I help with have their friends at UCP camp, but those friends can change to enemies in a matter of seconds. If a child doesnt like what the other is doing, they will vocalize it. They may also throw a fit until someone helps separate them. They will act like this because they are simply annoyed, and they want everyone to know it. I speak from experience. At UCP, a common activity is to play games and do crafts. One day at summer camp, it was my job as volunteer to play games with the kids and get them going on a craft. I explained the craft and how it was done. The kids that wanted to participate in the craft were given the necessities to start, and they all began. Then, I went back to the kids that wanted to just play games, and I helped to get them started. As I was helping the kids with the games, I heard some discrepancies from the kids doing the craft. I walked over to find out what was going on. One of the boys, who we will call Tommy*, got upset because another boy was talking about a movie he had recently seen. Tommy* kept telling the other boy to stop talking about it because it was getting on his nerves. I told Tommy* he needed to be nice, and maybe it would be a better idea for him to bring up a movie he liked rather than be mean. This seemed to work, and they ended up talking about a movie they had a common liking for. This just goes to show that it is possible for these children to get irritated with their friends for no apparent reason. It is also, at times, another uncomfortable situation to deal with, but with some practice being in other situations similar to this, it shouldnt be too difficult or awkward. Undoubtedly, volunteering at United Cerebral Palsy will be such a wonderful experience for you. You will get so much out of it. You will learn a lot about autism spectrum disorders, as well as a variety of other disorders, conditions, and

syndromes. You will definitely develop a lot of patience. Helping with these children takes a great deal of patience, understanding, and caring. You will develop all of that as the process moves along. With all of this being said, as well as everything I have said so far, I have five tips that I suggest for you when you are volunteering at UCP. First of all, the best advice I could give to you is to be as understanding as you can. When you are feeling frustrated or stressed, put yourself in their shoes. These children have so much to deal with, yet the majority of them still have a wonderful outlook on life. If you realize how frustrating and upsetting things are for them that seem so small to you and I, you may begin to understand the different reasoning behind their actions. My second tip is to have an open mind. You will be exposed to a very different atmosphere when volunteering at UCP, but if you go in with an open mind, it wont be too surprising. Thirdly, go into the volunteering with an open heart. Do your best to be compassionate towards the children. It will make for a better experience for everyone. My fourth tip is to have a willingness to help and learn. Volunteering is a learning process, and the quicker you understand that, the quicker you will be able to do my fifth tip. My fifth tip is to have fun! You may be helping at camp, but the fun activities arent just for the kids! Put a smile on your face, leave your troubles at the door, and enjoy yourself. This isnt meant to be scary, stressful, or treacherous. If you go into the process of volunteering at UCP with all of these five tips in mind, you will have such a wonderful time. Yes, you may encounter some difficult and maybe even some uncomfortable situations, but it is all part of the learning process. It will help you to realize the things other people have to live with for the rest of their lives. It will most likely make that homework you complained about for taking an hour of your time seem like nothing and make you realize that you might not have it so bad after all.

Works Cited

Autism FAQ. About Autism. Southwest Autism Research and Resource Center, n.d. Web. 19 April 2013. Chez MD, Michael G. Autism and its Medical Management: A Guide for Parents and Professionals. London and Philadelphia: Jessica Kingsley Publishers, 2008. 1128. Print. Cohen, Shirley. Targeting Autism: What We Know, Dont Know, and Can Do to Help Young Children with Autism Spectrum Disorders. 3rd ed. Berkeley and Los Angeles: University of California Press, 2006. 3-77. Print. Fox, Maggie. Study: More children being diagnosed with some form of autism as they get older. NBC News. NBC News, 20 March 2013. Web. 24 March 2013. Grosso, Kymberly. 10 Things You Can do to Help a Family Affected by Autism. Autism In Real Life. Psychology Today, 21 Jan. 2011. Web. 29 March 2013. Interior Design May Affect Behavior of Students with Autism Spectrum Disorders. School Construction News. N.p., 6 April 2013. Web. 19 April 2013. McMaster University. A Startling Diary Reveals the Onset of Autism. Science Daily, 17 Feb. 2005. Web. 4 April 2013. Osborne, Lisa A., and Phil Reed. The Relationship Between Parenting Stress and Behavior Problems of Children with Autism Spectrum Disorders. Exceptional Children 76.1 (2009): 54-73. Web. 15 Apr 2013.