Treatment Options for Autism Spectrum Disorders

 There is no single best treatment package for all children with ASD. One point that most professional agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.

Before you make decisions on your child’s treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child’s treatment based on your child’s needs. You may want to visit public schools in your area to see the types of program they offer to special needs children.

Guidelines used by the Autism Society of America include the following questions parents can ask about the potential treatments:

• Will the treatment result in harm to my child?
• How will failure of the treatment affect my child and family?
• Has the treatment been validated scientifically?
• Are there assessment procedures specified?
• How will the treatment be integrated into my child’s current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.

The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:

• How successful has the program been for other children?
• How many children have gone on to placement in a regular school and how have they performed?
• Do staff members have training and experience in working with children and adolescents with autism?
• How are activities planned and organized?
• Are the predictable daily schedules and routines?
• How much individual attention will my child receive?
• How is progress measured? Will my child’s behavior be closely observed and recorded?
• Will my child be given tasks and reward that are personally motivating?
• Is the environment designed to minimize distractions?
• Will the program prepare me to continue the therapy at home?
• What is cost, time commitment, and location of the program?

Among the many methods available for treatment and education of the people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental hearth: A Report of the Surgeon General states, “Thirty years of research demonstrated the efficacy of applied behavioral and in increasing communication, learning, and appropriate social behavior and in increasing communication, learning, and appropriate social behavior. The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.

An effective treatment program will build on the child’s interests, offer a predicable schedule, and teach as a series of simple steps, actively engage the child’s attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child’s earliest teachers, more programs are beginning to train parents to continue the therapy at home.

As soon as a child’s disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliances, and initiative of interaction. Included are behavioral methods, communication, occupational, and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skill activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.

Children older than 3 years usually have school based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home.

In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual child’s needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions.

During middle and high school years, instruction will begin to address such practical matters as work, community living and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living.

All through your child school’s years you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child’s progress.

MULTIPLE VULNERABILITIES

Many, if not most, of the people with mental retardation convicted of capital murder are doubly and triply disadvantaged. In general, America’s prison population is made up disproportionately of poor people, minorities, the mentally ill, and those who were abused as children. Not surprisingly, the mentally retarded people who become enmeshed in the criminal justice system usually share one or more of these characteristics: many of them come from poor families, suffered from severe abuse as children, and/or face mental illness in addition to their retardation.

A history of severe childhood abuse is particularly common among defendants with mental retardation convicted of capital murder. While the relationship between abuse and adult behavior is complex, "Strong evidence exists that a person who was abused as a child is at risk of suffering long-term effects that may contribute to his violent behavior as an adult," particularly if the abuse was severe physical abuse that caused serious injury to the child. The long-term negative effects of childhood abuse may be even greater for people whose cognitive abilities are impaired and whose ability to navigate in the world is already seriously compromised by mental retardation.

Luis Mata was executed in Arizona in 1996, convicted of rape and murder. Mata suffered organic brain damage from multiple medical traumas and had an I.Q. tested variously between 63 and 70. Mata's alcoholic father beat all of his sixteen children, but he picked primarily on Luis, subjecting him to constant physical abuse--kicking him, punching him, and beating him with electrical cords. When Luis Mata was six, he fall off a truck, badly fracturing his skull, but his family was too poor to obtain medical treatment for him. This and other medical traumas may have contribute to his neurological deficits.

Freddie Lee Hall, with an I.Q. of 60, is on death row in Florida, convicted of killing a young pregnant woman, Hall was one of seventeen children in an impoverished family. As a child, he was "tortured by his mother, sometimes stuffed in a sack and swung over a fire, or tied to the rafters and beaten." His mother even encouraged neighbors to beat her son, and she buried him in the ground as a "cure" for his asthma.

Robert Anthony Carter, who had mental retardation, was convicted of a murder committed when he was seventeen and was executed in 1998. One of sic children, Carter was abused by both his mother and stepfather, who whipped and beat him with belts and cords. Carter's siblings would be forced to hold him down while his mother beat him. At other times, his mother would wait until Carter was asleep and then begin to whip him. He also suffered from several serious head injuries as a child - including one in which he was hit so hard with a baseball bat on the head that the bat broke.

Many capital defendants with mental retardation also suffer from mental illness. Although the two conditions are often confused, they are different disorders. Mental illness almost always includes disturbance of some sort in emotional life; intellectual functioning may be intact, except where thinking breaks with reality (as in hallucinations). A person who is mentally ill, e.g. who is bipolar or suffers from schizophrenia, can have a very high I.Q., while mentally retarded person always has a low I.Q.  A person who is mentally ill, e.g. who is bipolar or suffers from schizophrenia, can have a very high I.Q., while a mentally retarded person always has a low I.Q. A person who is mentally ill may improve or be cured with therapy or medication, but mental retardation is a permanent state. Finally, mental illness may develop during any stage of life, while mental retardation is manifest by the age of eighteen. The percentage of mentally retarded people who are also mentally ill is not known with any certainty; estimates vary from 10 percent to 40 percent. Persons who suffer from both mental illness and mental retardation are particularly disadvantaged in dealing with the criminal justice system because each condition can compound the effects of the other.

Nollie Lee Martin had an I.Q. of 59 and was further mentally impaired as a result of several serious head injuries he had received in childhood. As a child he was physically and sexually abused and came from a family with a history of schizophrenia. His mental history included psychosis, suicidal depression, paranoid delusions, and self-mutilation. After being convicted in 1978 of kidnapping, robbery, and murder in Florida, Martin spent more than thirteen years on death row mostly incoherent and rocking back and forth on the floor of his cell. He required constant medication for his mental illness and hallucinations. He beat his head and fists against the cell wall and would mutilate himself. He was executed in 1992.

Emile Duhamel was convicted of the aggravated sexual assault and murder of a nine-year-old girl in 1984. He had an I.Q. of 56 and organic brain disease and suffered as well from paranoid schizophrenia and dementia. After a decade of legal proceedings over his competency for execution, Duhamel died in his Texas death row cell in 1998.

For the most part, statutes prohibiting the execution of persons with mental retardation adopt a version of this AAMR definition Seven States and the federal government do not specify an I.Q. level in their definition, making this an issue for the court to determine based on expert testimony. Two state statutes say that an I.Q. of 70 or below "shall be presumptive evidence of mental retardation," thus leaving open the possibility that a person whose I.Q. is above 70 may also, through expert testimony, estabilish his or her mental retardation.

The intellectual capacity of children was historically the benchmark for assessing the extent of retardation. In 1910, the American Association on Mental Deficiency identifies the three "levels of impairment" characterizing the "feebleminded”: there were "idiots", people "whose development is arrested at the level of a 2 year old";imbeciles," people whose development is equivalent to that of a 2 to 7 year old at maturity"; and morons," people "whose mental development is equivalent to that of a 7 to 12 year old at maturity." Fred J. Biasini, et al., The  terminology entered common discourse as epithets reflecting the country's shameful history of prejudice and mistreatment of people with mental retardation. The punitive, exclusionary, and racist historical manipulation of the concept of "mental retardation" are addressed in Robert Perske, Deadly Innocence?

With the upper ceiling on mental retardation reduced from an I.Q. of 85 to an I.Q. of 70, far fewer Americans are today diagnosed as "mentally retarded" than before. Although the lower I.Q. ceiling for mental retardation was agreed upon in part to avoid applying stigmatizing labels to so many people whose intelligence was below average, the changed I.Q. ceiling ironically had the effect of cutting from social services such as special education many people who would have otherwise benefited from the extra support. Scholars have emphasized that because of the possibilities of testing error, a person with an I.Q. of up to 75 should be considered "retarded" if the diagnoses is necessary to ensure access to special education or other assistance.

MENTAL RETARDATION AND CRIME

The vast majority of people with mental retardation never break the law. Nevertheless, mentally retarded people may be disproportionately represented in America’s persons. Although people with mental retardation constitute somewhere between 2.5 and 3 percent of U.S. population, experts estimate they may constitute between 2 and 10 percent of the prison population. The disproportionate number of persons with mental retardation in the incarcerated population most likely reflects the fact that people with this impairment who break the law are more likely to be caught, more likely to confess and be convicted, and less likely to be paroled. It may also be that some of the people with mental retardation who are serving the prison sentences are innocent, but they confessed to crimes they did not commit because of their characteristic suggestibility and desire to please authority figures. See Section IV below.

As with people of normal intelligence, many factors can prompt people with mental retardation to commit crimes, including unique personal experiences, poverty, environmental influences and individual characteristics. Attributes common to mental retardation may, in particular cases, also contribute to criminal behavior. The very vulnerabilities that cause problems for people with mental retardation in the most routine daily interactions can, at times, lead to tragic violence.

Many people with mental retardation are picked upon, victimized and humiliated because of their disability. The desire for approval and acceptance and the need for protection can lead a person with mental retardation to do whatever others tell him. People with mental retardation can fall prey when people with greater intelligence decide to take advantage of them, and they become the unwitting tools of others. Many of the cases in which people with mental retardation have committed murder involved other participants—who did not have mental retardation—and/or occurred in the context of crimes, often robberies, that were planned or instigated by other people. As one expert in mental retardation has noted, “Most people with mental retardation don’t act alone. They are usually dependent. They are never the ringleader or the leader of gang.”

“Joe, a mentally retarded man, admired tough-talking local drug dealers and sought to befriend them. One day his drug dealer “friends” gave Joe a gun and instructed him to go into a store and take money from the clerk. They told him, however, “Don’t shoot the guy unless you have to. “Joe hid for while, and then entered the store, but he forgot his instructions. “He panicked and couldn’t remember the plan. He shot the guy and forgot to rob the store.”

Billy Dwayne White, a teenager with mental retardation, allied himself with older men in the neighborhood, one of whom testified: “When Billy started hanging around us he was real scared and timed. We told him that he would have to change. We taught him how to steal. We would get him to do things that were wrong by telling him that he was a coward if he didn’t and that he could only be in our gang if he showed us that he had courage…we could persuade him to do these things because he was easily misled.

People with mental retardation may also engage in criminal behavior because of their characteristically poor impulse control, difficulty with long-term thinking, and difficulty handling stressful and emotionally fraught situations. They may not be able to predict the consequences of their acts or resist a strong emotional response. The homicides committed by the people with mental retardation acting alone are almost without exception unplanned, spur of the moment acts of violence in the context of panic, fear, or anger, often committed when another crime, such as a robbery, went wrong. For example, William Smith, I.Q. 65, tried to take money from “old Dan,” a friendly elderly storekeeper he had known all his life. When Dan resisted, smith panicked and lashed out, killing him.

Low intellectual skills and limited planning capacities mean that people who have mental retardation are more likely than people of normal intelligence to get caught if they commit crimes. As a result, they make goof “fall guys” for more sophisticated criminals. A suspect with mental retardation is also less likely to know how to avoid incriminating himself, hire a lawyer and negotiate a plea.

Frequently Asked Questions about Mental Retardation

Where can I find detailed information about the 2002 AAMR definition of mental retardation?

The released 10^th edition of Mental Retardation: Definition, Classification, and systems of supports discusses the 2002 AAMR definition and classification system in great detail. It presents the latest thinking about the mental retardation and includes important tools and strategies to determine if an individual has mental retardation along with detailed information about developing a personal plan of individualized supports. It is an available from AAMR through the Website.

What is the official AAMR definition of mental retardation?

Mental retardation Is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before the age of 18.

A complete and accurate understanding of mental retardation involves realizing that mental retardation refers to a particular state of functioning that begins in childhood, has many dimensions, and is affected positively by individualized supports. As a model of functioning, it includes the contexts and environment within which the person functions and interacts and requires a multidimensional and ecological approach that reflects the interaction of the individual with the environment, and the outcomes of that interaction with regards to independence, relationship, societal contributions, participation in school and community, and personal well being.

What factors must be considered when determining if a person has mental retardation and developing an individualized support plan?

When using the AAMR definition, classification and systems of supports professionals

And other team members must:

1. Evaluate limitations in present functioning within the context of the individual’s age peers and culture;                                                                                                                       
2. Take into account the individual’s cultural and linguistic difference as well as communication, sensory, motor, and behavioral factors;                                                        
3. Recognize that within an individual limitations often coexist with strengths;                                                                                                                             
4. Describes limitations so that an individualized plan of needed supports can be developed; and                                                                                                                 
5. Provide appropriate personalized supports to improve the functioning of a person with mental retardation.

Has AAMR always had the same definition of mental retardation?

No. AAMR has updated the definition of mental retardation ten times since 1908. Changes in definition have occurred when there is new information, or there are changes in clinical practice or breakthroughs in scientific research. The 10^th edition of Mental Retardation: Definition, Classification and systems of supports contains a comprehensive update to the landmark 1992 system and provides important new information, tools and strategies for the field and for anyone concerned about people with Mental Retardation.

What is a disability?

A disability refers to personal limitations that represent a substantial disadvantage when attempting to function in society. A disability should be considered within the context of the environment, personal factors, and the need for individualized supports.

What are the causes of Mental Retardation?

The causes of mental retardation can be divided into biomedical, social behavioral and educational risk factors that interact during the life of an individual and /or across generations from parent to child. Biomedical factors are related to biologic process, such as genetic disorders or nutrition. Social factors are related to social and family interaction, such as child stimulation and adult responsiveness. Behavioral factors are related to harmful behaviors, such as mental substance abuse. And educational factors are related to harmful behaviors, such as family and educational supports that promote mental development and increases in adaptive skills. Also, factors present during one generation can influence the outcomes of the next generation. By understanding inter-generational causes appropriate supports can be used to prevent and reverse the effects of risk factors.

What is the AAMR Mission?

Founded in 1876, AAMR is the world’s oldest and largest interdisciplinary organization of professionals concerned about mental retardation. With headquarters in Washington, DC, AAMR has a constituency of more than 50,000 people and an active core membership of 7,500 in United States and in 55 other countries. The mission of AAMR is to promote progressive policies, sound research, effective practices, and universal rights for people with intellectual disabilities.