Running Head: YOUTH WITH AUTISM

Youth with Autism: Tying it All Together Capstone Paper 2 Katherine E. Kutzli Michigan State University

YOUTH WITH AUTISM Abstract One in 88 children are diagnosed with autism in the United States, affecting 4-5 times more boys than girls (Autism Speaks, 2013). According to the Center for Disease

Control (CDC) (2012), the prevalence of autism has increased 10 fold in the last 40 years. Autism Spectrum Disorder (ASD) is a term that describes a group of intricate developmental disabilities that affect the brain development of children, adolescents and adults. Autism is characterized by communication and social skill deficits, in addition to repetitive behavior symptoms, which vary from person to person (American Psychiatric Association, 2000). With an increasing number of children and youth diagnosed with autism, it is essential that we, as youth development professionals, work together with the community to provide the best care and support possible. An in-depth understanding of autism coupled with a positive youth development approach will help provide youth with autism with the tools needed for a healthy development. The following paragraphs highlight two projects that have been completed as requirements for the Youth Development, Master of Arts Degree program through the Great Plains Interactive Distance Education Alliance (Great Plains IDEA). This paper will discuss autism symptoms, diagnosis, causes, and treatments, in addition to summary of the two projects, their objectives, and implications for youth development professionals.

YOUTH WITH AUTISM Introduction Every 25 minutes, a child in the United States is diagnosed with an autism spectrum disorder (Sousa, 2007, p. 179). Autism Spectrum Disorder (ASD) is a term that describes a group of complex developmental disorders that may cause social, communication, and behavioral difficulties (CDC, 2012). These disorders include Autistic Disorder, Aspergers Disorder, Pervasive Developmental Disorder, Childhood Disintegrative Disorder, and Retts Disorder. The paper focuses on youth with autistic disorder, or autism. Children, youth, and adults with autism, handle information in the brain in a different way than those without autism. Because ASD is a spectrum disorder, it affects everyone differently in relation to the onset of symptoms, types of symptoms, and a range of mild to severe symptoms (CDC, 2012).

The Diagnostic and Statistical Manual of Mental Disorders, Fourth edition (DSM IV), defines autistic disorder as having a minimum of six components from the three categories, with at least two social skills deficits, and at least one communication skill deficit, and one repetitive behavior as described in detail in the manual (American Psychiatric Association, 2000). Symptoms may present themselves early in life. With more and more children being diagnosed by three to four years old, there is a push to recognize the symptoms and diagnose as soon as possible in order to access the early intervention window of opportunity. The earlier a child is diagnosed, the earlier that child can receive support services and work toward accessing particular skills. Diagnosis of autism is completed in two stages. The first stage entails a process in which parents are given a survey and clinicians assess the child. During this assessment, clinicians will gather information to develop a diagnostic report of their findings. Tools

YOUTH WITH AUTISM and checklists used to determine whether or not a child has autism, varies by state (The National Autism Society, 2013). The second stage involves an extensive evaluation completed by several specialists that may include a psychologist, psychiatrist,

neurologist, or additional qualified clinicians. During this evaluation, these experts assess areas of social skills, communication skills, and behaviors (Sousa, 2007). There is no known cause of autism, but several theories are continually being proposed. Many researchers and specialists agree that autism spectrum disorders are linked to abnormal brain development in conjunction with genetic factors (Chakrabarti, 2009; Sicilie-Kira, 2004; Sousa, 2007). Environmental, or non-genetic factors have also been identified as potentially playing a role in the development of autism (Melillo, 2009; Sousa, 2007). Continued research, centered around understanding the factors that put children at risk for autism will aide in understanding the potential causes. Study to Explore Early Development (SEED), focuses on children ages 2-5 years old who are typically developing and those with Autism Spectrum Disorders and other disabilities with the intent of identifying risk factors for autism (CDC, 2012). There is no cure for autism. However, medications, early intervention services, and support services in combination may aid youth in minimizing problematic behaviors, and developing skills that will support them in society. Medications typically treat the behavioral symptoms of autism like aggression, self-injurious and violent behaviors, but can also be used to treat seizures and sleep disruptions that may also occur in youth with autism. An early intervention service like applied behavioral analysis is one treatment option proven to be effective for many children and youth with autism. According to Sousa (2007):

YOUTH WITH AUTISM Over 35 years of research have demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior in individuals with ASD. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones. This technique is tedious and time-consuming, calling for hours of daily instruction to break learning into very basic components and reward students for each positive step (p. 188). This method of ABA focuses on the skills as abilities that youth with autism have which

align with a positive youth development approach. While its important to understand the challenges that youth with autism are facing like undesirable behaviors, honing in on their already present skills is key to their development. Resources and services are essential to providing youth with autism with the quality of life they deserve. A positive youth development method takes a proactive approach to working with youth. In understanding the current and future needs youth with autism, youth development professionals, families, policy makers, youth, and community members can work together to create an environment in which they can thrive. In addition to raising awareness, becoming educated about children and youth with autism is a vital component to providing them with the supports and resources necessary to aid them in a healthy development. There are countless stereotypes and myths floating throughout society. Some of these myths include everyone who has ASD is mentally retarded[and] people with ASDs have no emotions and do not get attached to other people (Sicile-Kira, 2004, p. 3-5).

YOUTH WITH AUTISM

The two projects described in the following paragraphs were completed as steps taken to become more educated about youth with autism. The Effects of Autism on Adolescent Brain Development This PowerPoint presentation was completed in the summer of 2012 for a Brain Development course, taught through Michigan State University. This presentation aims to inform the reader about how autism effects brain development of adolescents. Research has shown an abnormal brain development in autistic youth presenting with accelerated growth by the age of two and halted progression by two or three (Courchesne, 2004). The areas of the brain that are affected the most by the abnormal development are the cerebellum, temporal lobes, and frontal lobes. Loveland, Bachevalier, Pearson, and Lane (2007) suggest abnormal brain development in autistic youth affects the connectivity or wiring of the brain. The various parts of the brain affected by ASD include the cerebral cortex, basal ganglia, corpus callousm, cerebellum, brain stem, hippocampus and amygdala. The cerebral cortex is a highly developed, located in the brain tissue. Divided into the right and left hemisphere, the cerebral cortex is responsible for memory, language, and thought. The basal ganglia, located within the two cerebral hemispheres accounts for instincts. Within the basal ganglia is the caudate nucleus, which, is amplified, in autistic youth (Shriber, 2012). Increased size of the caudate nucleushas been associated with compulsive behaviors, difficulty with changes in routine, and stereotypical motor movements [hand flapping] (Shriber, 2012, p. 5). Autistic youth who have a halted growth of the corpus callosum may exhibit social skill difficulties in their ability to solve

YOUTH WITH AUTISM a problem, or infer information and conclude with a general statement. The brain stem relays information between the cerebral cortex and other parts of the body. Courchesne (2004) found the maximum amount of grey matter in autistic youth was reached approximately 5 years earlier than non-autistic youth. Additional studies suggest a smaller amount of grey matter in autistic youth may contribute to abnormal wiring in the

brain (Jou, Minshew, Melhem, Keshavan, & Hardan, 2009). The hippocampus takes part in learning and the ability to store information, which may be underdeveloped in autistic youth causing extremely active behavior. An underdeveloped amygdala, also shown in autistic youth, is responsible for interpreting and responding to emotions. The amygdala is key to responding the emotions, which may cause aggression in autistic youth. Brain plasticity is the brains ability to change and adapt to an ever-changing environment. The brain changes with use. Placing youth with autism in early intervention services as soon as possible, in combination with other methods can positively impact their development. Having an understanding of the brain development of autistic adolescents may provide youth development professionals with a glimpse into why certain symptoms occur. Perhaps if we understand why these symptoms are occurring, we can work together to continue finding ways to support this group of youth. In addition to behavioral, educational, social, and medical supports, play can also be a support for youth. Providing a location for play and exercise is one way to help promote a healthy youth development. Sensory Trail: A Safe Play and Exercise Environment for Children This grant proposal was completed in the spring of 2012 for an Administration and Program Management class taught at University of Nebraska. The intent of the

YOUTH WITH AUTISM

project was to go through the motions of developing a grant proposal and less on realistic specifics. Details, like the creation of a foundation, mission, etc. was envisioned, and therefore does not represent an actual organization. White Pine Christian Services aims to provide additional services for at-risk youth, with a goal of encouraging higher rates of psychical activity in adolescents with autism and other developmental disabilities (Kutzli, 2012). Exercise and play are two important components of the overall wellness of youth. Children with autism and other developmental disorders who are do not exercise on a regular basis are at risk for a variety of health challenges like obesity, diabetes, high cholesterol, and asthma. The rise in prevalence of autism in the United States necessitates a safe and engaging play environment. Children and adolescents with autism may benefit from an environment that caters to and supports their needs. The Sensory Trail is designed to foster the engagement, interaction, socialization, and acceptance of youth with autism, other disorders, family members and friends. The trail will be open year-round, at no charge, and open to the public from 9am-sunset. A schematic of the Sensory Trail is provided on the website. The Sensory Trail is wheelchair accessible, with restroom facilities and four picnic tables located on a cement surface. The path of the trail is an estimated mile long and utilizes the already present landscaping. A sensory play area will be constructed to encourage tactile experience, fine motor skill development, social interaction, and creative play. The elevated sandbox will be constructed to encourage fine and gross motor development,

YOUTH WITH AUTISM imaginative play and collaborative play. The dome area is a piece of equipment constructed to allow children and adolescents who are over stimulated, a place to take a break. This area encourages development of social skills, climbing, and

provides a tactile experience with a variety of textures. Gardens provide a way for children and adolescents to enjoy and interact with nature, like in the musical garden. Children and adolescents can experience music in a fun and exploratory way. The musical garden may also encourage social skills, collaborative play, and fine motor development. (Kutzli, 2012, p. 4). Youth with autism and other behavioral problems deserve a place where they can engage, learn, and interact with family and friends. The Sensory Trail is one way in which this group of youth can run and play in an environment that supports some of their needs. Implications for Youth Development Professionals Learning and creating awareness go hand in hand for youth development professionals. It is important to continue learning and asking questions about the things we do not understand in addition to educating others. We have the opportunity to help youth with autism lead healthy, successful lives. It is necessary to stress that no child with autism is exactly the same and therefore may require different services. The information learned through this program has increased my understanding of youth with autism. Different styles of readings, from medical journals to bibliographies has given me knowledge of not only the symptoms, causes, diagnosis, treatments, and research, but also the view points of youth with autism. I have worked with autistic youth in the past and found through my studies in the YD program that there was and is so much to learn and understand. ASD youth are often misunderstood, misread, and

YOUTH WITH AUTISM

10

undertreated. As a YD professional, it is critical to have as much information as possible about ASD in order to adequately serve this population. ASD is a topic that is not adequately covered in many classes and as a result, many youth professionals are not equipped to serve them in the best way possible. Not only is knowledge about ASD important, but how it is seen through the lens of PYD, the application of the 40 Developmental Assets, and program development and service will help youth, clinicians, staff members, families, legislators, the public, and the community to create an environment in which youth with autism can thrive.

YOUTH WITH AUTISM References American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Autism Society. (n.d.). About autism. http://www.autism-society.org/about-autism/ Autism Speaks. (2013). What is autism? What is autism spectrum disorder? http://www.autismspeaks.org/what-autism CDC-Center for Disease Control. (2012). Study to explore early development (SEED). Autism Spectrum Disorders. http://www.cdc.gov/ncbddd/autism/seed.html CDC-Center for Disease Control. (2012). New data on autism spectrum disorders. Autism Spectrum Disorders. http://www.cdc.gov/eatures/CountingAutism/

11

Chakrabarti, B. (2009). The genetics of autism spectrum disorders. University of Reading Autism Research Centre. Cambridge, England: University of Cambridge. Courchesne, E. (2004) Brain development in autism: Early overgrowth followed by premature arrest of growth. Mental Retardation and Developmental Disabilities Research Reviews, 10, 106-111. doi:10.1002/mrdd.20020 Jou, R. J., Minshew, N. J., Melhem, N. M., Keshavan, M. S., Hardan, A. Y. (2009). Brainstem volumetric alterations in children with autism. Psychol Med, 39, 13471354. doi: 10.1017/S0033291708004376 Kutzli, K. (2012). Sensory trail: A safe play and exercise environment for children and adolescents with autism and other problem behaviors. Unpublished manuscript. Youth Development Masters Program, Great Plains Interactive Distance Education Alliance, Online. Kutzli, K. (2012). The effects of autism on adolescent brain development. Unpublished

YOUTH WITH AUTISM manuscript. Youth Development Masters Program, Great Plains Interactive Distance Education Alliance, Online. Loveland, K. A., Bachevalier, J., Pearson, D. A., Lane, D. M. (2008). Fronto-limbic functioning in children and adolescents with and without autism. Neuropsychologia, 46, 49-62. doi:10.1016/j.neuropsuchologia.2007.08.017

12

Melillo, R. (2009). Disconnected Kids: The Groundbreaking Brain Balance Program for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders. New York: Perigee Book. Sicilie-Kira, C. (2004). Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Aspergers Syndrome, Pervasive Developmental Disorder, and Other ASDs. New York: The Berkley Publishing Group. Shriber, L. (2010). Autism: A neurological and sensory based perspective. Center for International Rehabilitation Research Information and Exchange (CIRRIE), 2-14. Buffalo, NY: The State University of New York. Sousa, D. A. (2007). How the Special Needs Brain Learns (2nd ed.). Thousand Oaks, California: Sage Publications. The National Autism Society. (2013). What to expect on the day. Diagnosis: What to Expect. http://www.autism.org.uk/About-autism/All-about-diagnosis/Diagnosisthe-process-for-children/Diagnosis-what-to-expect.aspx