Autism

By Sonal Kishore

This chapter was developed as an overview of autism. The goal of this chapter is not to serve as a tool for diagnoses, but rather to provide resources for those wanting information on the disorder, information on the possible treatments and their efficacies, the impact of autism on education in the United States. This chapter is not a complete discussion on the fore mentioned topics, and additional resources are provided at the end for the interested reader.

The objectives of this chapter are:

· Provide a brief overview of the disorder

· Identify the current treatments and their efficacies available for autistic children in

United States

· Discuss the policies surrounding educational rights and standards of care

of autistic children in the United States

· Provide a bibliography for the reader to find additional resources on topics

presented in the chapter.

Introduction

Autism is defined in the Diagnostic & Statistical Manual-Fourth Edition-Text Revision (DSM-IV-TR) as a pervasive developmental disorder (PDD) (1). The DSM-IV-TR serves as a guideline for mental health professionals for diagnosing mental illness in patients. Furthermore, the manual provides a standard on which research, diagnosis, and treatment can be based. Currently, the DSM-IV-TR is the most frequently used set of guidelines in the United States.

PDD’s are characterized as “severe and pervasive impairment in several areas of development: reciprocal social interactions kills, communication skills, or the presence of stereotyped behavior, interest, and activities” (1). Other PDD’s include Asperger’s Disorder, Rett’s Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified. It is important to note that many of the symptoms of autism overlap with those found in other PDD’s. Therefore, distinguishing between disorders can be difficult if not done properly and by a trained individual. An inaccurate diagnosis can have implications for the effectiveness of the treatment. This chapter will focus only on autism.

History of Autism

Autism has been documented in the literature throughout history. The word “autistic” comes from the Greek word meaning “self”. It was used to describe a symptom of schizophrenia, a severe psychiatric disorder. In the 18^th, a physician in Southern France found a boy in the woods and named him, Victor. Victor, “the boy from Averyon” as he was later called, lacked language and communication skills and did not seem aware of his surroundings (2). There are two theories as to the etiology of the disease. It is believed that the symptoms that were displayed by Victor were a result of living in the woods, without human contact. Another belief, mainly thought years later, was that Victor was in fact one of the earliest documented cases of autism. (2).

Autism, as it is thought of today, was first described by Leo Kanner in 1941. Kanner described case studies of children who had three main characteristics; aloneness, desire for sameness, and the exceptional abilities in one area, such as mathematics (2, 3). Kanner’s case studies generally had large cognitive and language deficits. At the same time, Hans Asperger in Austria described case studies of patients who were very similar to those by Kanner, but lacked the severe language deficits and cognitive development. While they were initially termed “autistic children”, with the differences in the severity of the symptomotolgy and believed etiology, these children are now known to have asperger’s disorder (3).

Today, there are many characteristics that may indicate that a child may be autistic. Please Note: This description of autistic symptoms and characterization is not complete or intended for diagnostic purposes. If you feel that your child or a child you know displays these behaviors, it is important that to see a trained professional.

Some characteristics that may be displayed by an autistic child include; severe deficit in social, language, and communication skills; withdrawn from social interactions, rigid and repetitive patterns of behaviors, poor eye contact, and can be cognitively delayed (4). The American Psychiatric Association (1) has defined autism in the DSM-IV:

1. The patient must present a total of at least six items from the following groups of symptoms:

A. Impairment in social interaction, as manifested by at least two of the following:

a. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.

b. Failure to develop peer relationships appropriately.

c. Lack of spontaneous seeking to share enjoyment, interests, or achievements with other people.

d. Lack of social or emotional reciprocity.

B. Impairment in communication, as manifested by at least one of the following:

a. Delay in or total lack of, the development of spoken language.

b. In individuals with adequate speech, marked impairment in the ability to start or sustain a conversation with others.

c. Stereotyped and repetitive use of language, or idiosyncratic language.

d. Lack of varied, spontaneous make-believe play or social imitative play.

C. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

a. Abnormal preoccupation with one or more stereotyped and restricted patterns of interest.

b. Inflexible adherence to specific nonfunctional routines or rituals.

c. Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting).

d. Persistent preoccupation with parts of objects.

2. Prior to 3 years of age, delay or abnormal function in social interaction, language, or symbolic or imaginative play.

International Classification of Disease

Internationally, it is important to note that the diagnostic criteria differs slightly from

the DSM-IV criteria. Many countries use the International Classification of Diseases-10 (ICD-10) as their diagnostic manual. The ICD-10 is produced by the World Health Organization for the purpose of providing a standard diagnostic manual with which epidemiology can use to assess consistent rates of disease (5).

The ICD-10’s PDD categories differ from the DSM-IV which include; Childhood Autism, Atypical Autism, Rett’s syndrome, Other Childhood Disintegrative Disorder, Overactive disorder associated with mental retardation and stereotyped movements, Asperger’s syndrome, and Other Pervasive Developmental Disorders, specified and unspecified (6). The DSM lumps together all forms of Atypical Autism and other PDD’s into the category PDD-NOS. The category Overactive disorder associated with mental retardation and a stereotyped movement is not included in the DSM. Looking more closely at the Overactive disorder, it seems as if the ICD has made a distinct category for those with autism who have mental retardation and a possible mood or ADHD disorder. Despite these differences, the criteria in the DSM-IV and ICD-10 are more similar than in previous editions allowing recently for a clearer consensus on classification and prevalence estimates.

Prevalence

In the past, the study of the prevalence of autism has been difficult, in part because of the ambiguity and ever-changing diagnostic criteria. However, epidemiologists still tried to estimate the prevalence of autism. Researchers once believed that autism was a relatively rare condition with 3-4 children per 10,000 being diagnosed as autistic (7). Recently, studies have assessed the world-wide prevalence of 5-6 per 1000 children (8, 9). Those with autism are three to four times more likely to be male than female (8). These estimates demonstrate that autism is not a rare disease, and is becoming more prevalent. Therefore, it is important for health care professionals to consistently and correctly identify autistic children, to find the etiology of the disease, and find effective treatment to help these children and their families.

Screening

There has been great debate in the research and clinical communities on whether there should be global screening of children for autism and other pervasive developmental diseases. Regardless one’s views, it is important for parents to know that their role in identifying autistic symptoms in their children is critical (9). Often parents will bring their children into the pediatrician’s office, because they feel that their children show impairment (i.e. impairment in social interaction, communication, and patterned behavior).

The major arguments against screening include the cost of large scale screening, lack of resources for such activates, comorbidity of other learning disabilities, and effectiveness of the screening instrument. For instance, many of the screening instruments may not identify those with mild autistic symptoms (9). However, there are many instances where screening of children may be very beneficial. In particular, younger siblings of those with autism have a 5% increased risk of developing autism, which is a 100 times increased risk than the normal population (10). In this case, the benefit for this higher risk population may outweigh the associated negatives. Providing patients and parents with any potential information earlier is important in the outcome, as effectiveness of treatment increase the earlier treatment is initiated. In fact, higher satisfaction with the diagnostic process has been associated with an earlier identification of autism (10). The question of the mandatory screening remains unresolved, and will probably remain so for sometime. Ultimately, it comes down to each individual family’s choice, because the preference to know immediately or not is variable and highly personal.[1]

Etiology of Autism

For as long as the symptoms of autism have been described, the etiology of the disorder has been speculated. Dr. Itard described the symptoms as a result of the boy being uncivilized. Leo Kanner was one of the first researchers suggest that autism had biological underpinnings, because most of the symptoms were apparent before the age of 2 (2). On the other hand, most of Kanner’s contemporaries felt autism was a result of the environment and not biology. One such researcher, Bruno Bettleheim was the first to state the “refrigerator mother theory” in 1956 (11). This theory attributed the development of the symptoms of autism to these “cold” of “schizophrenogenic” mothers that had little interaction with the children.

In 1964, Dr. Bernard Rimland published the book “Infantile Autism” which put to rest the psychogenic theory of autism (3). Since that time, there have been many theories, as to different biological or infectious agents that may cause autism. Perhaps one of the most famous theories surrounded the debate over whether the Measles, Mumps, and Rubella (MMR) vaccine can cause autism in young children. In 1998, Andrew Wakefield (12) published an article in the Lancet, an English based academic journal, documenting an association between children receiving the MMR vaccine and the development of autism. Subsequently, many researchers have criticized this study, citing that temporality of the association cannot be established. The MMR vaccine is administered to children around the ages of 2-3, which is around the time that the majority of autism cases are diagnosed. This association may be due to coincidence rather than a true causal relationship. Despite the fact that this theory has largely been disproved, the myth that the MMF vaccine can cause autism is still held. With all of the theories behind the etiology of autism, parceling out the true factor (s) that causes autism can be difficult. In recent years, there has been an increased focus on the biological factors of autism.

Biological Plausibility

The exact biological mechanism of the development of autism is unknown. However, there is a consensus amongst professionals that genetics plays a role in the development of autism. Genes are the units in our body that contain all of the information that influence our development (15, 16).[2] This theory is supported by the recent research of twins with autism that found monozygotic (identical) twins have a 65% concordance rate (17).

The related neurological and neuro-chemical damage (damage to the brain) seen in autism may be related to both genetics and the environment (18). Recently, research of autism has been aided by the development of magnetic resonance imaging (MRI). An MRI is a safe and effective technique that scans the brain and produces an image that the doctors can view. MRI’s have shown structural abnormalities in the brains of autistic children. Damage to the cerebral cortex, hippocampus, cerebellum, and amygdala have been associated with the development of autism (15, 16, 18). One theory involving the cerebral cortex postulates that the maturation of the GABA neurons in the cortex is disrupted in an autistic child, resulting in a decreased number of these neurons. GABA has been postulated to serve as a framework in the cerebral cortex that directs other neurons and neuronal connections into the proper place (19). Therefore, a decreased number of GABA neurons affect the normal development of the cortex.

Another theory surrounds the hippocampus and amygdala. It states that autistic kids have an increased long-term potentiation of excitatory neurons. This increase in excitation leads to a decrease in sensitivity of these neurons. Therefore, these “over-excited” neurons in the hippocampus and amygdale do not respond properly respond to new information thus inhibiting the processing of new information (16).

Neurochemical differences between normal and autistic children have also been identified. There are three main neurotransmitter systems (serotonin, glutamate, and GABA) that have been hypothesized to be affected in the development of autism (15). Autistic children have documented higher serotonin levels in their blood and urine, higher number of glutamate neurons largely responsible for excitatory responses in the brain, and a decreased level of GABA, an inhibitory neurotransmitter. Overall, Rubenstein & Merzenich have theorized autism is a result of an increased excitation and decreased inhibition in certain areas of the brain (16). Below is a table 1 to clarify the basic anatomical changes that may occur in someone with autism (9).[3]

Table 1. Postulated Changes in the Brain Structures of Autistic Children

Brain Structure	Structures Role in Brain	Autistic Brain	Possible effects in Autism
Cerebellum	Coordinates movement; involved in memory formation	Smaller; loss of neurons in Purkinje cell layer	Effects movement and formation of memory
Cerebral Cortex	Important in higher functions including planning, perceptions, general movement	Decrease in the number of GABA neurons and abnormal development of cerebral neurons	Deficits in higher functions, such as planning, language,
Amygdala	Regulates feelings, specifically fear and aggression; emotional memory	Decreased size resulting in increased density of neurons	Abnormal social behavior
Hippocampus	Involved in memory formation	Increase density of neurons, decreased excitability	Inability to process/ respond properly to new information

Treatment

History of Treatment

The documented treatment of autism goes back to the days of the “Wild Boy of Averyon”. Dr. Itard treated Victor, “the Wild Boy of Averyon” with language and manner skills. Dr. Itard believed that if he taught Victor the proper way to treat and talk to a lady, his aloofness and language difficulties would disappear (3). Since that time, different therapies have been tried with some being more effective than others. Earlier treatments have included institutionalization and electroconvulsive treatments. Both of such treatments have been found to be largely ineffective in treating autism.

Current Treatment

Today, there is a variety of treatment options for those with autism. Sifting through these numerous therapies can be overwhelming for a parent. Regardless of the treatment path that one may chose, it is important to remember a few key points. First, any treatment regiment should be individualized to the child’s specific needs and strengths. For example, a treatment that focuses on teaching verbal communication to a child who can already possesses verbal language abilities may be largely ineffective in treating this child. Second, researchers agree that the earlier the intervention, the more effective (20). Third, keeping in mind there are no known cures for autism, any treatment that claims to be the cure-all, quick changes in the child, or what looks like “too good to be true” probably is not an effective treatment. It is important to thoroughly research the treatment option one will chose for their child. It would also be advantageous to discuss any options with a trained professional. Fourth, this chapter by no means provides a comprehensive discussion of all options. Rather, this chapter should be used to guide the reader.[4]

Various recent treatments address specific autistic symptoms. These include music therapy, vitamin therapy, scotopic sensitivity training, which is when the child will wear the therapists’ eye-glasses, and auditory integration, which includes the familiarization of the child to certain sounds (7). Recently, intensive comprehensive treatments been have used to treat autism. Below is a discussion of a sampling of the different therapies available to children with autism in the United States. Some have been empirically shown to be more effective than others.

Table 2. Selected Treatments for Autism

Treatment Approach	Theory/Target Behavior	Description/ Mode of Action	Negative Aspects	Effectiveness
Applied Behavior Analysis (See Table 3 for reference)	Behavior that is rewarded will be repeated Intensive (30-40 weeks)	Perform specific action, child responds, and there is reaction from therapist Complex tasks broken down	- May be too difficult on child/family - Changes behavior but not prepare child for new situation	- Many validated studies show consistent efficacy in improving social, communication, academic function
TEACCH (See Table 3 for reference)	Environment should adapt to child Very individualized	Psycho Educational Profile- increase social, coping skills Look for cause of behavior and then provide appropriate alternate behavior	Too structured Child focused more on charts, schedules than behavior change	- Mostly anecdotal evidence to support effectiveness - Few non author related research on outcomes - More empirical evidence needed to assess efficacy.
Picture Exchange Communication Systems (See Table 3 for reference)	Focused on acquisition of communication skills Clearly understood and initiated by child	Uses ABA based method Picture used to show want to communicate		Not much known about experimental data.
Floor Time (See Table 3 for reference)	Emotional development Encourages social interaction	Build skills off existing development abilities	Used best as an adjunct therapy	No empirical, peer-reviewed studies (cannot say effective or not)
Social Stories (See Table 3 for reference)	Increase ability to recognize point of view of others Focus on Social Skills	Develop story to provide info to child about expectations in situation		Not much known about experimental data.
Sensory Integration (See Table 3 for reference)	Sensory problems	Desensitization; Understand individual sensory needs	Does not teach higher functioning skills	Little to no experimental data to assess efficacy (cannot say effective or not)
Facilitated Communication (See Table 3 for reference)	Communication skills caused by motor deficits	Support arm to help communicate by computer	Not scientifically validated	Many major professional assoc. oppose use
Miller Method (Symbol Accentuation Reading Program) (See Table 3 for reference)	Child cannot organize and understand surroundings	Use of equipment and pictures to teach reading/writing and expansion ability to interact with environment		Very few studies measuring outcomes. Not well substantiated.
Son Rise (See Table 3 for reference)	Total acceptance of child and ability and if child could do better, they would.	3 part teaching program for parents, etc to implement therapy Focus on love and acceptance and motivating child to learn	Intensive (40-hr per week) for both child and family	No peer reviewed studies show effectiveness (cannot say effective or not)
Vitamin/Minerals (See Table 3 for reference)	Low levels of certain vit in child (i.e. A, B1, B3, etc).	Vitamins help with creating change in body to relieve symptoms of autism	Controversial results- more robust studies needed.	Inconclusive evidence Experimental studies have not reached consensus. Studies those show positive effect said to have design problems.
Complementary TX.	Art/Music/Animal Therapy	Provide child with these skills, inc. social interaction and accomplishments	Used mainly as conjunct therapy and not alone
Medication (See Table 3 for reference)	Disruptions in neuro-chemistry	Balances neurochemistry	Exact etiologies in brain unknown, medications may have unwanted side effects. More research needed.	Shown effective in certain situations. Only under advise of physician due to potential side effects.

Medication

This section will speak a bit to the role of medication in autism. Frequently, autism occurs along with other psychiatric disorders, such as depression, anxiety, and mental retardation (9, 18). A study has shown that within those that have autism 41.9% are severely mentally impaired, 29.4% are moderately mentally impaired, and 19.3% are minimally or not mentally impaired (24). Other disorders that occur in autistic people include epilepsy, sleep disorder, self-injurious behaviors, Tourette’s syndrome, and obsessive-compulsive disorder (24).

Many times, doctors will prescribe medications to help with certain autistic symptoms and psychiatric disorders. However, the role of medication is complex. Any parent or guardian should know that 1) There is no known medication that will cure autism 2) Many drugs have not been approved by the Food and Drug Administration (FDA) for use in children and 3) Drugs can have some undesirable side effects. Therefore, when seeking out medication, it is important to be aware of the potential benefits and effects. The complex nature of medicating a child with autism (and possible psychiatric comorbidities) necessitates parental discussions with a healthcare provider.

There are many types of psychiatric drugs that are used in treating autism. Many times, the type of drug therapy is chosen because of existing comorbidites as stated above. The different drugs include; selective serotonin uptake inhibitors (SSRI’s ie. Prozac and Zoloft) that have been shown to improve social contacts and repetitive movement, antipsychotic (Zyprexa, Geodon, and Risperdal) have been used to decrease the aggressive behaviors, and anti-epileptics and Ritalin have been used in autistic children with epilepsy and inattention and hyperactivity disorder, respectively (9). This chapter chooses not to discuss these medications any further, but refers the reader to resources that do an excellent job of discussing medications.[5]

Availability

Effective treatment is not only important to the individual child and family, but also to the public healthcare and costs of the community. Millions of dollars can be spent on a treatment that may ultimately be found ineffective. Therefore, public health and educational officials want to invest in effective treatments that will have a positive benefit to cost analysis. While the federal and state governments are legally bound to pay most of the bill (up to $60,000 per year), parents are left paying for anything that is not covered.[6] Therefore, finding effective treatment is important for any parent of a child with autism.

It can be difficult to find appropriate effective treatment for an autistic child. Many times, the specialized centers that claim specialized treatment are found in big cities. However, it is important to find effective treatment nearest you. Otherwise, travel expenses will be added to the treatment costs. So the question comes down to, where can parents go to get the care that they need?

After a diagnosis is made, the first stop every parent should make is to their pediatrician’s office. Here, the different treatment options can be discussed. Furthermore, the office will contain resources on different organizations that may help with a child’s treatment. These could include psychologists, specialized therapists, case workers, teachers, advocacy groups, nutritionists, support groups, and even insurance and legal needs. Inevitably, once the parent arrives at home, there will be many additional questions that still remain unanswered. This is the time when additional resources are usually required. Included below is a list of websites where these different resources can be assessed. Most of these websites provide lists of organizations, sometimes in one’s neighborhood, that one can contact directly, through phone, email, or a personal visit.

Websites on Specific Treatments

These websites are the “official” websites of some of the treatments for autism. Where official websites are not applicable or additional resources may be helpful, there are other resources. At these websites, you will be able to read about their theories and methods, and get their contact information to call or write the organizations. Please note that because some of these sites were set up by the very people who promote the therapies, it may be biased in depiction of the therapy. This chapter does not endorse any of these websites or their content. It is recommended that the reader gather data from many different resources so one can make an educated decision.

Table 3. Resources for Specific Treatments

Name	Endorsed Treatment Method	Website
Autism Treatment Center of America	Son-Rise	www.autismtreatmentcenter.org
Autism Research Institute (ARI)	Vitamin Therapy	www.autismwebsite.com/ari/index.htm
TEACCH program	TEACCH	www.teacch.com
Pyramid Educational Consultants	Picture Exchange Communication Systems	www.pecs.com
The Floor time Foundation	Floor time	www.floortime.org
The Miller Method	Miller Method	www.millermethod.org
The Gray Center for Social Learning and Understanding	Social Stories	www.thegraycenter.org
Facilitated Communication Institute	Facilitated Communication	Soeweb.syr.edu/thefci/
Medication[7]	Medications	http://www.patientcenters.com/autism/news/med_reference.html
Applied Behavior Analysis	Applied Behavior Analysis	http://rsaffran.tripod.com/aba.html#introduction http://www.abainternational.org/[8]

Comprehensive Websites

These websites provides the viewer with information on different treatment options and facilities.

Table 4. Resources for Autism Treatment

Name	Description	Website
Yale Child Study Center	- list of national/regional/state support organizations - Name, number, address, email given of many organizations	Info.med.yale.edu/chldstdy/autism/pdd.html
Families for Early Autism Treatment	- FEAT organization available in certain US cities - Provides contact info on public agencies, treatment organizations, advocacy options, medical and healthcare (etc.) in the cities	www.feat.org
Local Chapters of the Autism Society of America	- excellent directory - provides information on your specific zip code -choice of many different services (including legal, day care, ASA chapter, autistic camps)	www.autism-society.org à Under Resources
Autism Treatment Information	- Ample information on ABA - Book List, “How to” lists (i.e. How to recruit people to work as therapists), newsletter, contacts to parents/professionals in your area	www.autismtreatment.info/aba+how+to.aspx
Future Horizons	- Books, videos, conferences, magazines (many multi-media items) on autism - site is a distributor (you can purchase items here)	www.futurehorizonz-autism.com

Educating those with Autism

Providing an education to an autistic child requires tailoring a plan to each individual child. The abilities of those with autism can vary widely from child to child, as they can be of below normal intelligence, normal intelligence or savants. Therefore, the most important aspect of their education is the formulation of an individualized plan that focuses on the weaknesses (and strengths) of each child (20). This very fact makes education an autistic child, a challenging, but rewarding, endeavor.

In the 1999-2000 school year, the average amount spent to educate an autistic child was $18,000 US. This compares to the cost of educating a “normal” child, which was $6,556 US, the average special education child, $ 12, 500 US, and a child with multiple disabilities, $20,100 US (21).

In 1997, the federal government passed an updated version of the Individuals with Disabilities Education Act (IDEA), which provides these children with a free education, which is funded by your public schools. From 1993 to 2002, the number of autistic children receiving assistance from IDEA increased 500% from 20,000 to 120,000, respectively (21).

Individuals with Disabilities Education Act: (IDEA)

The IDEA is a federal law that requires free and the least restrictive public education for all kids with disabilities in the United States (20). There are two other federal laws that protect the educational rights of those with disabilities; Family Education Rights and Privacy Act of 1974, which protects educational records and their dissemination and the Section 504 Rehabilitation Act of 1973, protects those with disabilities against discrimination (20).

The IDEA states that every child, from the ages of 3 to 21, has the right to receive evaluation, and if deemed disability, has the right to (20):

• a free and unrestrictive education
• an Individual Educational Plan (IEP)
• family involvement at all levels
• a yearly (or more often, if requested) evaluation

An unrestrictive education means that when at all possible the child should be placed in a classroom with other non-disabled children. However, this classroom environment should be tailored to fit the needs of the disabled child. If placing in a classroom with non-disabled children is not feasible due to the needs of the child, the next least environment should be used.

Individual Educational Plans (IEP’s) are plans that state the individuals education plan, including the goals for that child during that school year, the services and persons needed to meet those goals, a timeline of the each service, and the outline of how the goals will be evaluated. Furthermore, if the child is above the age of 16, there needs to be an outline and goals of helping these children move from in school to out of school. The goals of the IEP should not only include academic goals, but also functional, behavioral, occupational, and social skills (20). These skills are important because one of the goals of the IDEA is to prepare children with disabilities to function within society after the age of 21.

No IEP should be the same, as they should reflect the goals of each child. A meeting should be conducted to discuss the goals of the IEP and should include the parents, the teacher, another person other from a third agency, and outside persons that are felt necessary by either the teacher or the parent (20). An important inclusion in the IEP is any additional training that the teacher may find necessary to best provide education to the child. For example, a teacher who has an autistic child may find it necessary to attend a seminar on autism or on the different treatments for autistic children.

As A Parent You Have the Right To:

As a parent of an autistic child,