Running head: THE DYNAMICS OF AUTISM

THE DYNAMICS OF AUTISM: MEETING THE SOCIAL & ECONOMIC CHALLENGE

SONYA MYRICKS, JESSICA VICKSON CLAYTON STATE UNIVERSITY November 2, 2012

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TABLE OF CONTENTS ABSTRACT ............................................................................................................................................... 3 INTRODUCTION ...................................................................................................................................... 4 CO-OCCURRING CONDITIONS ASSOCIATED WITH AUTISM ........................................................ 5 Sensory Integration Disorder (SID) ........................................................................................................ 5 Intellectual Disability (ID) ...................................................................................................................... 5 Epilepsy .................................................................................................................................................. 5 Attention-Deficit/Hyperactivity Disorder (ADHD) ................................................................................ 5 Adults ................................................................................................................................................. 5 Children .............................................................................................................................................. 5 Fragile X Syndrome ................................................................................................................................ 6 SOCIOLOGICAL AND CULTURAL ASPECTS OF AUTISM ............................................................... 6 North America ........................................................................................................................................ 6 Europe..................................................................................................................................................... 7 Asia ......................................................................................................................................................... 7 FAMILIES AND THE IMPACT OF AUTISM .......................................................................................... 8 Reactions to diagnosis............................................................................................................................. 8 Effects of delay in diagnosis ................................................................................................................... 9 EFFECTS ON THE FAMILY .................................................................................................................... 9 Parents .................................................................................................................................................... 9 Siblings ................................................................................................................................................. 10 Partners ................................................................................................................................................. 10 ECONOMIC COSTS OF AUTISM .......................................................................................................... 10 Table 1 .............................................................................................................................................. 11 CONCLUSION......................................................................................................................................... 13 REFERENCES ......................................................................................................................................... 14 APPENDIX .............................................................................................................................................. 16 Exhibit 1 [see ref #4]............................................................................................................................. 16 Exhibit 2 [see ref #4]............................................................................................................................. 16

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ABSTRACT The reported cases of autism diagnoses have increased steadily over the years and so has the costs. Some estimate that autism costs society approximately $137 billion per year [14]. This research will focus on co-occurring conditions associated with autism, sociological and cultural aspects of autism, families and the impact of autism, effects on the family and economic costs of autism. Also, we will introduce that early intervention has shown to significantly reduce the costs of treating autism.

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INTRODUCTION Over the past decade, there has been an increase in the number of children diagnosed with an autism spectrum disorder (ASD). According to the Center for Disease Control and Prevention (2012), 1 out of every 88 children in the United States meets the criteria for an ASD. Previous research has shown that having a child with a disability such as ASD presents a unique set of challenges that affect the entire family unit and individual family members’ health, wellbeing, and experiences across the life span [14]. These stressors include challenges navigating the myriad of educational, medical, and behavioral services; financial hardships related to the cost of care; and emotional aspects of having a child with a disability [14]. The core deficits associated with an ASD are impairment in social interaction and communication, as well as the presence of unusual behaviors and/or interests [12]. ASDs occur in all racial, socioeconomic, and ethnic groups and are four times more likely to occur in boys than in girls. According to Jacobson et al., (1998), autism is defined as a disorder of brain development arising before age three, and often spotted by that age or shortly thereafter. Other behavioral, developmental, psychiatric, and medical problems can co-occur with autism such as sensory integration disorder (SDI), intellectual disability (ID), epilepsy, attention deficit hyperactivity disorder (ADHD), and fragile X syndrome. Autism is diagnosed behaviorally by observing a child for qualitative impairments in three main areas: disordered social interactions delayed or disordered communication, and restriction in range of interests and activities. To help understand the economic costs of ASD, and the importance for early intervention, four topics were researched. These topics include 1) co-occurring conditions associated with autism; 2) sociological and cultural effects of autism on families as observed by experts in North America, Europe, and Asia; 4) financial costs of autism treatment and early intervention. Understanding the complexity of autism spectrum disorder will help us to precisely deal with its effects on the individuals and on society as a whole. With better understanding we will be able to establish treatment options that can decrease the overall economic costs of ASD.

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CO-OCCURRING CONDITIONS ASSOCIATED WITH AUTISM Sensory Integration Disorder (SID) Children who have been diagnosed with autism sometimes suffer from a condition that causes them to be impartial to sensation. For example, some sensations such as loud noise, hot or cold, can be extremely detrimental to a child whose sensory nodes are insensitive to the touch. It also can make them unable to pull away from something that is extremely cold or hot.

Intellectual Disability (ID) It has been documented that many children who suffer from autism are diagnosed as having intellectual disability and that may be the reason they are also autistic. Much research is required to provide a more reliable link between the two. As researchers show, some degree of intellectual disability is quite common in children who are autistic, and sometimes they are normal in all other areas of life, but weak in others [7].

Epilepsy Seizures are another common problem for children and teens that are autistic. According to researchers, “one in four children with an Autism Spectrum Disorder will develop seizures. Seizures are caused by abnormal electrical activity in the brain, and can result in temporary loss of consciousness, convulsions, unusual movements, and staring spells” [7]. However, there are many medications that are used to help control seizures.

Attention-Deficit/Hyperactivity Disorder (ADHD) Adults

Attention-deficit/hyperactivity disorder (ADHD) in adults is associated with significant difficulties in social functioning. “Adults with ADHD often experience problems with social activities, social interactions, and social relationships; they do not make friends as easily as others and they are less likely to marry” [14]. Children

“In the United States disorders that are not as common, such as ADHD…, are less commonly recognized than more widespread disorders such as depression. In addition, youth who develop a disorder before early adolescence lack the ability to recognize mental health disorders in themselves. As such, recognizing the signs of a disorder is the responsibility of the

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child’s parents. From this perspective the age at which a child with ASD will be diagnosed will be effected by the ability of the parent to recognize difficulty in their child’s development.” [13]

Fragile X Syndrome At this point it is important to mention another condition that is gaining more awareness. Some individuals that have been diagnosed with autism might actually be suffering from Fragile X syndrome. Fragile X syndrome is a genetic condition involving changes in part of the X chromosome. It is the most common form of inherited intellectual disability (mental retardation) in boys. It is also considered a “genetically transmitted form of autism.” Fragile X syndrome is caused by a change in a gene called FMR1. “Although all children with this chromosomal abnormality do not have autism; 10-15% probably does” [8].

SOCIOLOGICAL AND CULTURAL ASPECTS OF AUTISM Culture frames our worldview and helps us make sense out of what we know. It is the goals, beliefs, and attitudes shared by a group of people [18]. This may be why some in the autistic community view autism as an identity more than a disability or medical condition. For example, the autistic community sees all symptoms of autism as characteristics that do not need correcting; they are just another way of relating and looking at the world differently [23]. Therefore, it would be a mistake to assume that what may work here in one culture will work in another culture [18].

North America Autism is the fastest-growing developmental disability and it is estimated that 1% of the population may have a diagnosable autistic spectrum disorder (ASD) [1]. According to the Centers for Disease Control (CDC) 2012 report, the prevalence of autism has been raised to 1 in 88 births in the United States and nearly 1 in 54 boys [2]. The rate of autism has increased tremendously from the 1980s when children were diagnosed at a rate of two to five in 10,000 [22]. So society is either getting better at diagnosing the problem, people are more willing to seek treatment for their disabled child; more individuals are developing an ASD, or any combination of the three. “Beliefs exist both at a cultural level and in the minds of individuals. Cultural beliefs about autism among those in the U.S. “ranked other parents of a child with autism as a source of

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support (68%) more often than they did their family members (53%). These “other parents” were non-relatives, people they would never have met if their child did not have this diagnosis, and yet they were the most-endorsed source of support” [16]. Perhaps this is due in part because parents with an autistic child are better able to understand what other parents with an autistic child is going through.

Europe In Western medicine, an illness is seen as an individual’s problem caused by defects in the function of his or her body leaving the individual being seen as a variant from the norm [7]. “It is said that illness in Western medicine results in barriers, stereotypes, and personal suffering that the individual must fight to overcome or continue to suffer through. Western medicine has defined autism as a developmental disorder resulting from cognitive impairments and manifesting in various characteristics. The cause of cognitive impairments in autism is unknown and widely debated. Autism is perceived in Western cultures as an incurable, disabling illness in which individuals are limited in many aspects of their daily lives” [7]. In Europe, there are millions of children who have been diagnosed with autism. “British autism advocates want autistic people acknowledged as a minority rather than as disabled, because they say that ‘disability discrimination laws don’t protect those who are not disabled but who ‘still have something that makes them look or act differently from other people’” [21].

Asia Culture can play a large part in the process of diagnosing ASD. In some cultures such as many Asian cultures, where the amount of children a family has is limited, having a disabled child can be seen as a negative or shame on the family. The absence of proper means of identification and treatment procedures for individuals with autistic disorder (AD) (a term interchangeable with childhood autism) is the result of the religious practices and Traditional Chinese Medicine (TCM) of the 18 th century [15]. The general perspective was that mental disturbances were the consequence of bad deeds committed by either oneself or members of an individual’s family. Consequently, blessings for individuals diagnosed with autism, were sought from the gods in the local temples [9].

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“Over the past thirty years, China has changed from an isolated, poor country to one of the world’s largest and globalized economies. During that period of time, the lives of people with disabilities such as autism have been greatly impacted” [15]. A blind study in Korea showed an estimated 2.64% prevalence whereas in other general population samples the prevalence was more in the range of 0.75%. Additionally may of the students identified as having an ASD by this study “were in regular schools, without having been diagnosed and without support [10]. South Korea’s education system is very structured with minimal socialization having 12+ hour school days, 5 – 6 days awake. This environment is an ideal setting for a functioning ASD student to work [10]. What singled this study from other studies is that they targeted the mainstream school population without adding the stigma of identifying children with disabilities. This lessened the apprehension of participation in a society where having a child with a disability is considered shameful on the family.

FAMILIES AND THE IMPACT OF AUTISM Reactions to diagnosis People respond to things differently from others. A child being diagnosed with autism is no different. Many parents welcome a diagnosis of any sort because it gives them a sense of relief in at least having something to work with. They no longer feel as if the behavior of their child is due to something they may have done as parents. Having a diagnosis also makes it easier to help explain the child’s behavior to other people who are not familiar with ASD behaviors [8]. Some parents may cry, get angry, lash out at others or try to place blame. This may due to the fact that even though they have received some information about what autism is, it is not enough to satisfy their deep concerns. “The National Initiative for Autism: Screening and Assessment (NIASA) report (2003) stresses the need to provide more information and to involve families throughout the assessment process” [8]. In addition, some parents who had learned their child was autistic were in total disbelief. They could not understand how something like this could happen to their child. There is enormous guilt and grief overwhelming the parents. Many begin to question the professionals

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who gave the analysis. For instance, some questioned whether the professionals really knew what they were doing. In the end, one of the main questions on parents’ minds was what the prognosis will be for their child. In reality, this cannot be given because it is not readily known. However, in most cases some level of care will be inevitable throughout the autistic child’s life [8].

Effects of delay in diagnosis Some parents are completely devastated upon learning that their child has been diagnosed with autism. On the other hand, according to researchers, the earlier a child was diagnosed, the sooner the parents came to accept the diagnosis [8]. This early diagnosis in turn, leads to early treatment that can offer a child that is autistic a better chance of a semi-normal life.

EFFECTS ON THE FAMILY Parents People deal with traumatic news differently, and parents are no exception. Researchers suggest there is considerable and consistent evidence that mothers are much more impacted than fathers [8]. In other words, mothers of autism diagnosed children react much more personally. However, fathers did not experience as much of a personal effect. Fathers tend to view a child diagnosed with autism as getting more stressed by the behavior of their wives than their autistic child. According to researchers [8], the child’s problems led to direct confrontations between the parents and threatened their marriage. As a result, many couples divorce; however, the divorce rate is the same as it is for the rest of the population. “The relatively less severe impact of the child’s autism on most of the fathers appeared to be at least partially due to gender roles connected to work and child nurturing [8]. In a few cases, fathers acknowledged that their child’s autism might have encouraged a greater commitment to work. But, this is not to say that fathers were not emotionally distressed by their child’s autism” [8]. It was found that mothers were much more likely to claim that their child’s autism had severely affected their emotional well-being [8]. In addition, many mothers who worked were

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often forced to miss work. They performed below average and some eventually worked parttime or ultimately left the workplace altogether.

Siblings “Because parents need to spend so much time and energy with an autistic child, it leaves very little room to attend to other siblings [20]. Sometimes siblings feel as if they are not loved as much as their autistic sibling and began “acting out” their frustrations. Therefore, it is imperative that parents take time out to attend to the non-autistic children by taking them to the park to play and involve them more in the autistic child’s life.

Partners It was once thought that people with autism never married. However, this is not true; there are many undiagnosed individuals with autism who have partners and children [8]. Some adults are quite capable of managing their partnerships and children with very little difficulty. On the other hand, some have a difficult time dealing with marriage and children.

ECONOMIC COSTS OF AUTISM The prevalence of a developmental disability is greater in boys than in girls, and boys are more likely to be diagnosed earlier. The prevalence is about the same in non-Hispanic whites and blacks but both are greater than Hispanics. This could be because of the culture or could also be due to underreporting because many Hispanics in the United States are not citizens and are fearful of deportation. A greater percentage of those diagnosed with a developmental disability are on government funded insurance. This opens the question of whether economic status plays a part in the development of an ASD, but more research is needed to make a determination on that issue (see Appendix, Exhibit 1). All these occurrences play a part in being able to identify where the costs are and where early intervention education needs to be focused. There was an increase in the prevalence of autism from 1987 – 2008 of 0.47%, an increase in the prevalence of ADHD of 6.69%, and an increase in the prevalence of Intellectual Disabilities of 0.71%. The percentage change in autism from 1997 – 1999 versus 2006 – 2008 was an incredible increase of 289.5%. (See Appendix, Exhibit 2)

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According to a study in 2005 the expenses for a child with autism was more than triple that of a child without, and for those children that also had a co-occurring condition the costs were even higher. Table 1 shows the breakdown of these costs. Table 1

Expenses for an Autistic Child in 2005* No ASD $1,812

Autism Only $7,200

Autism + ID $19,200

Autism + Epilepsy $11,900

Autism + ADHD $9,500 [see ref #10] *Information was obtained using children enrolled in Medicaid [5]

A more recent study shows that an individual living in the United States with autism will incur an estimated $1.4 million USD ($1.46 million USD in the UK) over their lifetime but that increases to $2.3 million USD ($2.4 million USD in the UK) if the individual has autism as well as ID [3]. “The research team [for the above mentioned survey] found that the cost of autism in the U.S. alone is greater than the entire Gross Domestic Product (GDP) of 139 countries around the world” [3]. From these numbers we can see that the cost of autism is excessive but when ID is a cooccurring condition with autism the costs are astounding. The larger portion of the expense is incurred during adulthood. While many high functioning autistics can function in society there are many, especially those with ID, that must have continued supervision to survive. When we consider the increase in the prevalence of autism and combine that with the average cost per individual with autism the costs will continue to increase at a steady pace. Therefore, one reason that we must consider alternatives such as early intervention methods is to decrease these costs. “Clinical research and public policy reviews that have emerged in the past several years now make it possible to estimate the cost-benefits of early intervention for infants, toddlers, and preschoolers with autism or pervasive development disorder” [12]. With early intervention, it has been documented that cost savings range from $187,000 to $203,000 per child for ages 3-22 years and from $656,000 to $1,082,000 per child for ages 3-55 years [12].

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SOLUTIONS TO MINIMIZE COSTS OF AUTISM Early intervention has been proven to stimulate the brain receptors in autistic children under the age of 3 and taught to respond in a similar manner to a child without an ASD. This early intervention not only helps an autistic child better understand their environment but also helps to increase IQ scores [2]. With the increase in IQ scores and the increase in diverse education ability many autistics that would have in the past required expensive special facilities and services will be able to learn the necessary skills to function in society more independently. There are currently many treatment programs available to sufferers of ASD; however many of these treatments are costly and only isolate one or two symptoms and work towards adjusting those symptoms independently of other issues that might also need to be dealt with. Many of these treatments are currently used because of the delay in development after a child reaches three years of age. It is important for early intervention to be extremely effective that it be administered as early in the development of a child, before the age of three. One early intervention method that is finding positive results is the Early Start Denver Model (ESDM). This behavioral program “improves not only social skills, but also brain activity in response to social cues such as facial expressions…’This may be the first demonstration that a behavioral intervention for autism is associated with changes in brain function as well as positive changes in behavior, says Tom Insel, M.D., director of the national Institute of Mental Health”’ [2]. Since most of the cost for autistics is incurred in their adult years for services that provide living conditions and supervision being able to forgo these costs with early intervention at a young age would be advantageous. For adults with disabilities, employment is a way for them to become accepted by society and full participants [15]. Getting children early intervention that increases IQ’s, social interactions and communication skills will increase the ability for individuals with ASD to gain employment and be able to live independently. This will increase the individual’s well-being and decrease the costs to them and to society as well.

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CONCLUSION In closing, autism spectrum disorders (ASDs) are easier to detect today than they were in times past. Most people have become more familiar with the typical symptoms associated with autism. As people learn what autism is and is not, the more tolerable people will be toward those who have been diagnosed as autistic. The more we understand how ASDs affect individuals and society the easier it is to identify needed resources, utilize effective treatments such as early intervention, and decrease the costs associated with each individual situation. Early intervention reduces costs because it targets treatment at the beginning allowing individuals to live independently therefore eliminating the need for expensive services as adults.

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REFERENCES [1] Andreica-săndică, B., Patca, S., Panaete, A., & Andreica, S. (2011). THE IMPACT OF AUTISM DIAGNOSIS ON THE FAMILY. Acta Medica Transilvanica, 16(3), 478-480. [2] Autism Speaks. (2012). Intensive Early Intervention Improves Social Skills and Brain Responses. Retrieved From: www.autismspeaks.org/science/science-news/intensiveearly-intervention-improves-social-skills-and-brain-responses [3] Autism Speaks. (2012). New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached 34 Billion in the U.K. Retrieved from: http://www.autismspeaks.org/about-us/press-releases/annual-cost-of-autism-triples. [4] Boyle, Coleen A.; Boulet, Sheree; Schieve, Laura A.; Blumberg, Stephen J.; YearginAllsopp, Marshalyn; Visser, Susanna; and Krogan, Michael D. (2011). Trends in the prevalence of Developmental Disabilities in US Children 1997-2008. Pediatrics: Official Journal of the American Academy of Pediatrics. DOI: 10.1542/peds.2010-2989. Retrieved from: http://pediatrics.aappublications.org/content/early/2011/05/19/peds.2010-2989. [5] Centers for Disease Control and Prevention. (2012). Key Findings: Autism Spectrum Disorders and Health Care Expenditures. Retrieved From: http://www.cdc.gov/ncbddd/features/autism-keyfindings2012.html [6] Common Issues Associated With Autism. Retrieved from http://www.siblingsofautism.com [7] Ecker, J., (2010). Cultural Belief Systems in Autism and the Effects on Families. Retrieved from http://www.academiccommons.columbia.edu/.../Cultural_Psych_ECKER.pdf [8] Families: The Impact of Autism. Retrieved from http://www.autism.org.uk/about-autism/research/information-for-pupils-and-students/ [9] Hsiao, C.H., Magyar, C. (2006) The effect of socio-cultural context on conceptualizing autistic disorder in the People’s Republic of China International Journal of Psychosocial Rehabilitation. 11 (1), 51-60 [10] Kim, Young Shin, M.D., Ph.D.; L. Leventhal, Bennett, M.D.; Koh, Yun-Joo, Ph.D.; Fambonne, Eric, M.D.; Laska, Eugene, Ph.D.; Lim, Eun-Chung, M.A.; Cheon, Keun-Ah, M.D., Ph.D.; Kim, Soo-Jeong, M.D.; Kim, Young-Key, M.D.; Lee, Hyun Kyung, M.A.; Song, Dong-Ho, M.D.; Grinker, Roy Richard, Ph. D. (2011). Prevalence of Autism Spectrum Disorders in a Total Population Sample. American Journal of Psychiatry, The. 168:904-912. 10. 1176/appi.ajp.2011.10101532. Retrieved from: http: ajp.psychiatryonline.org/article.aspx?articleid=116570.

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[11] Jäbrink, K., & Knapp, M. (2001). The economic impact of autism in Britain. Autism: The International Journal Of Research & Practice, 5(1), 7. [12] Jacobson, J. W., Mulick, J. A., & Green, G. (1998). Cost–benefit estimates for early intensive behavioral intervention for young children with autism—general model and single state case. Behavioral Interventions, 13(4), 201-226. [13] James, Mindy; Deckner, Deborah, Dr.; Maddox, Samuel, Dr. (2012). Prospectus Thesis: Access and Utilization of Support Services by Families Affected by an Autism Spectrum Disorder. [14] McArdle, M., (2012). The Economic Impact of Autism on Families. Retrieved from http://www.theatlantic.com/business/archive/2012/05/the-economic-impact-of-autismonfamilies/257892/ [15] McCabe, H., & Wu, S. (2009). Helping each other, helping ourselves: A case of employment for an adult with autism in Nanjing, China. Journal Of Vocational Rehabilitation, 30(1), 57-66. DOI:10.3233/JVR-2009-0453 [16] Petersen, B. E. (2012). Social Perception and Cue Utilization in Adults With ADHD. Journal Of Social & Clinical Psychology, 31(7), 663-689. [17] Plumb, J.C. (2011). The Impact of Social Support and Family Resilience on Parental Stress in Families with a Child Diagnosed with an Autism Spectrum Disorder. Retrieved from EBSCO Host. [18] Ravindran, N., & Myers, B. (2012). Cultural Influences on Perceptions of Health, Illness, and Disability: A Review and Focus on Autism. Journal Of Child & Family Studies, 21(2), 311-319. doi:10.1007/s10826-011-9477-9 [19] Shute, N. (2010). Desperate for an Autism Cure. Scientific American, 303(4), 80-85. [20] Shyu, Y.L., Tsai, J., & Tsai, W. (2010). Helping each other, helping ourselves: A case of employment for an adult with autism in Nanjing, China. [21] Sociological and cultural Aspects of Autism. Retrieved from http://www.pediaview.com/ [22] Solomon, A. H., & Chung, B. (2012). Understanding Autism: How Family Therapists Can Support Parents of Children with Autism Spectrum Disorders. Family Process, 51(2), 250-264. doi:10.1111/j.1545-5300.2012.01399.x

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APPENDIX Exhibit 1 [see ref #4] Prevalence of Developmental Disabilities in Children Aged 3 to 17 Years, by Selected Demographic and Socioeconimic Factors, NHIS, 1997 - 2008 Condition

Total, %

Age, % y

Race and Ethnicity, %

Maternal Education, % Poverty Level, Health Insurance Coverage, % Less Than High College Non-Hispanic Non-Hispanic Medicaid 3-10. 11-17. Hispanic Boys Girls High School/Some Graduate or