WHAT ARE THE AUTISM SPECTRUM DISORDERS?

The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome. Prevalence studies have been done in several states and also in the Untied Kingdom, Europe and Asia. A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 children 3-10 years old autism. These wide range of prevalence points to need for earlier and more accurate screening for the symptoms of ASD.

The earlier the disorder is diagnosed the sooner the child can be helped through treatment interventions, pediatricians, family physician, day-care providers, teachers, and parents may initially dismiss signs of ASD, optimistically thinking the child is just a little slow and will catch up. Although early intervention has a dramatic impact on reducing symptoms and increasing a child’s ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten.

All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look.

Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.

Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other unusual behaviors become apparent. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent. Some parents report the change as being sudden, and their children start to rejects people, act strangely and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable.

ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Web cast, Autism among US.

THE DIAGNOSIS OF AUTISM SPECTRUM DISORDERS

Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational setting for at least 2 years the preschool years result in improved outcomes in most young children with ASD.

In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristics behaviors of ASD may be apparent in the first few months of child’s life, or they may appear at any time during the early years. For the diagnosis, problems in at least of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during “well child” check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.

Screening

A well child check up should include a developmental screening test. If your child’s pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child’s development will be essential in helping to screen your child. Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones.

Some screening instruments have been developed to quickly gather information about a child’s social and communicative development within medical settings. Among them are the checklist of Autism in Toddlers (CHAT), the modified checklist for autism in Toddlers (M-CHAT), the screening tool for Autism in Two-Years-Olds (STAT), and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older).

Some screening instruments rarely solely on parent responses to questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high-functioning autism or Asperger syndrome.

During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism spectrum screening questionnaire (ASSQ), the Australian scale for Asperger syndrome, and most recent, the childhood Asperger syndrome test (CAST), are the some of the instruments that are reliable for identification of school age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.

If, following the screening process or during a routine “well child” check up, your child’s doctor sees any of the possible indicators of ASD, further evaluation is indicated.

Comprehensive Diagnostic Evaluation

The second stage of diagnosis must be comprehensive in order to accurately rule in or rule an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnosis children with ASD.

Because ASDs are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neuralgic and genetic assessment, along with in depth cognitive and language testing. In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS-G). The ADI-R is a structured interview that contains over 1000 items and is conducted with a caregiver. It consists of four main factors—the child’s communication, social interaction, repetitive behaviors, and age of onset symptoms. The ADOS-G is an observational measure used to “press” for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.

Still another instrument often used by professionals is the childhood autism. Rating Scale (CARS). It aids in evaluating the child’s body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age the examination observes the child also obtains relevant information from the parents. The child’s behavior is rated on a scale based on deviation form the typical behavior of children of the same age.

Two other tests should be used to assess any child with a developmental delay are a formal audio-logic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral monitor stage in which they put any everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.

Customarily, an expert diagnostic team has responsibility of thoroughly evaluating the child, assessing the child’s unique strengths and weakness, and determining a formal diagnosis. The team will then meet wit parents to explain the results of the evaluation.

Although parents may have been aware that something was not “quite right” with their child, when the diagnosis is given, it is devastating blow. At such a time. It is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions.

MICRO-CEPHALY

What is microcephaly?

Microcephaly is a condition that is present at birth in which the baby’s head is much smaller than normal for an infant of that age and gender. “Micro” means small and cephaly refers to head. Most children with microcephaly also have a small brain and mental retardation. However, some children with small heads have normal intelligence.

What causes microcephaly?

Microcephaly is either caused by exposure to harmful substance during the fetal development, or it may be associated with genetic problems or syndromes that may have a tendency to run in families.

Theories suggest that the following ay predispose a fetus to problems that affect the normal development of the head during pregnancy:

• Exposure to hazardous chemicals/substance
• Exposure to retardation
• Lack of proper vitamins and nutrients in the diet
• Infection
• Prescription or illegal drug and alcohol consumption
• Maternal diabetes

Microcephaly can occur alone or in association with other health problems, and may occur from inheritance of an auto-somal recessive, or rarely, an auto-somal dominant gene. Acquired microcephaly may occur after birth due to various brains injuries such as lack of oxygen or infection.

Auto-somal recessive and auto-somal dominant are to patterns in which genes are inherited in a family. Genes determine out traits, such as eye color and blood type, and can also cause disease. Auto-somal means that both males and females are equally affected. Recessive means that two copies of the gene, one inherited from each parent, are necessary to have the condition (in this case, microcephaly). After parents have had one child with auto-somal recessive microcephaly, there is a 25 percent chance, or one in

four chances, with each pregnancy, to have another child with microcephaly.

What are symptoms of Microcephaly?

The following are the most common symptoms of microcephaly. However, each child may experience symptoms differently. Symptoms may include:

• Appearance of the baby’s head is very small
• High-pitched cry
• Poor feeding
• Seizures
• Increased movement of the arms and legs (spasticity)
• Developmental delays
• Mental retardation

The symptoms of microcephaly may resemble other conditions or medical problems. Always consult your child’s physician for a diagnosis.

How is microcephaly diagnosed?

Microcephaly may be diagnosed before the birth by prenatal ultrasound, a diagnostic imaging technique which uses the high frequency sound waves and a computer to create images of blood vessels, tissues, and organs. Ultrasounds are used to view the internal organs as they function, and to assess the blood flow through various vessels.

In many cases, microcephaly may not be evident by ultrasound until the third trimester, and therefore may not be seen on ultrasound preformed earlier in pregnancy. The diagnosis of microcephaly may be made at birth or later in the infancy. The baby’s head circumference is much smaller than normal. During the physical examination, the physician obtains a complete prenatal and birth history of the child. In older babies and children, the physician may also risk if there are a family history of the microcephaly or others medical problems. The physician will also ask about developmental milestones since microcephaly can be associated with other problems, such as mental retardation. Developmental delays may require further medical follow up for underlying problems.

A measurement of the circumference of the child’s head is taken and compared to a scale that can identify normal and abnormal ranges.

Diagnostic tests that may be performed to confirm the diagnosis of microcephaly and identify abnormalities in the brain include:

• Head circumference – this measurement is compared with a scale for normal growth and size
• X-ray – a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.
• Computed tomography scan (also called a CT or a CAT scan). – A diagnostic imaging procedure that uses a combination of x-rays and computer technology to produce cross-sectional images (often called slices), both horizontally and vertically, of the body. A CT scan shows detailed images of any part of the body, including bones, muscles, fat and organs. CT scan are more detailed than the x-rays.
• Magnetic resonance imaging (MRI) – a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body.
• Blood tests
• Urine tests

Life-long considerations for a child with microcephaly:

There is no treatment for microcephaly that will return the baby’s head to a normal size or shape. Since microcephaly is a life-long condition that is not correctable, management includes focusing on preventing or minimizing deformities and maximizing the child’s capabilities at home and in the community. Positive reinforcement will encourage the child to strengthen his/her self-esteem and promote as much independence as possible.

The full extent of the problem is usually not completely understood immediately after birth, but may be revealed as the child grows and develops.

Children born with microcephaly require frequent examination and diagnostic testing by their physician to monitor the development of the head as the child grows. The medical team work hard with the child’s family to provide education and guidance to improve the health and well being of the child.

Genetic counseling may be recommended by the physician to provide information on the recurrence risks for the disorder and any available testing.

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.

MANIFESTATIONS BEFORE THE AGE OF EIGHTEEN

Mental retardation is present from childhood. It can be caused by any condition which impairs development of the brain before, during, or after birth. The causes are numerous: hereditary factors; genetic abnormalities (e.g. Down’s syndrome); poor prenatal care; infections during pregnancy; abnormal delivery; illness during infancy; toxic substances )e.g. consumption of alcohol by the pregnant mother; exposure of the child to lead, mercury or other environmental toxins); physical abuse; and malnutrition, among others. Regardless of the cause, part of the definition of mental retardation is that it manifests itself during an individual’s developmental period, usually deemed to be birth through age eighteen. Many psychiatrists argue that the age before which signs of retardation must become manifest should be raised from eighteen to twenty-two, to reflect the difficulties in obtaining accurate age records for many people with this disability and the differing rates at which people develop.

An ordinary adult cannot suddenly “become” mentally retarded. An adult may, for reasons related to accident or illness, suffer a catastrophic loss in intellectual functioning and adaptive skills, but this would not make him or her “mentally retarded.” Since by definition mental retardation starts during childhood. One implications of this is that mental retardation is virtually impossible for an adult to fake: when evaluating whether an adult is mentally retarded, testers look not only at I.Q. test results, but also at school reports, childhood test records, and other evidence that would show whether his or her intellectual and adaptive problems developed during childhood.

Early diagnosis can help the person with mental retardation obtain access to appropriate special education, training, clinical programs, and social services during important developmental years – as well as through life. With help from family, social workers, teachers, and friends, many mentally retarded people succeed in simple jobs, maintain their own households, marry, and give birth to children of normal intelligence. But, although support and services can improve the life functioning and opportunities for a person with retardation, they cannot cure the condition. There is no “Cure’ or mental retardation.

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.

AVAILABLE AIDS For ASD

When your child has been evaluated and diagnosed with an autism spectrum disorder, you may feel inadequate to help your child develop to the fullest extent of his or her ability. As you begin to look at treatment options and at the types of aid available for a child with a disability, you will find out that there is help for you. It is going to be difficult to learn and remember everything you need to know about the resources that will be most helpful. Write down everything. If you keep a notebook, you will have a foolproof method of recalling information. Keep a record of the doctor’s reports and the evaluation your child has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for you child; the more you know, the more effectively you can advocate.

For every child eligible for special programs, each state guarantees special education and related services. The individuals with disabilities education act (IDEA) is a federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, school psychologist, social worker, school nurse, or aide.

By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the child’s individualized education program (IEP). The IEP is an agreement between the school and the family on the child’s goals. When your child’s IEP developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well). Parents play an important part in creating the program, as they know their child and his or she needs best. Once your child’s IEP is developed, a meeting is scheduled once a year to review your child’s progress and to make any alterations to reflect his or her changing needs.

If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the child’s home or a place familiar to the child. The services provided are written into an individualized family service plan (IFSP) that is reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them In daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD.

There is a list of resources at the back of brochure that will be helpful to you as you look for programs for your child.