WHAT IS ADAPTIVE BEHAVIOR?

Adaptive behavior is the collection of conceptual, social, and practical skills that people have learned so they can function in their everyday lives. Significant limitations in adaptive behavior impact a person’s daily life and affect the ability to respond to a particular situation or to the environment.

Limitations in adaptive behavior can be determined by using standardized tests that are named on the general population including people with disabilities and people without disabilities. On these standardized measures, significant limitations in adaptive behavior are operationally defined as performance that is at least 2 standard deviations below the mean of either

(a) one of the following three types of adaptive behavior conceptual, social or practical or

(b) an overall score on a standardized measure of conceptual, social, and practical skills.

Some specific examples of Adaptive Behavior Skills

Conceptual Skills

Receptive and expressive language

Reading and Writing

Money concepts

Self-directions

Social Skills

Interpersonal

Responsibility

Self-esteem

Gullibility (likelihood of being ticked or manipulated)

Naiveté          

Follows rules

Obey laws

Avoids victimization

Practical Skills

Personal activities of daily living such as eating, dressing, mobility and toileting.

Instrumental activities of daily living such as preparing meals, taking medication, using the telephone, managing money, using transportation and doing

Housekeeping activities.

Occupational skills.

Maintaining a safe environment.

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.

WHAT ARE SUPPORTS?

The concept of supports originated about 15 years ago and it has revolutionized the way habilitation and education services are provided to persons with mental retardation. Rather than mold individuals in to pre-existing diagnostic categories and force them into existing models of service, the supports approach evaluates the specific needs of the individual and then suggests strategies, services and supports that will optimize individual functioning. The supports approach also recognizes that individual needs and circumstances will change over time. Supports were an innovative aspect of the 1992 AAMR manual and they remain critical in the 2002 system. In 2002, they have been dramatically expanded and improved to reflect significant progress over the last decade.

Supports are defined as the resources and individual strategies necessary to promote the development, education, interests and personal well being of a person with mental retardation. Supports can be provided by a parent, friend, teacher, psychologist, doctor or by any appropriate person or agency.

Why are supports important?

Providing individualized supports can improve personal functioning, promote self-determination and societal inclusion, and improve personal well-being of a person with mental retardation. Focusing on supports as the way to improve education, employment, recreation and living environments is an important part of person-centered approaches to providing supports to people with mental retardation.

How do you determine what supports are needed?

AAMR recommends that an individual’s need for supports be analyzed in at least nine key areas such as human development, teaching and education, home living, community living, employment, health and safety, behavior, social and protection and advocacy.

What are some specific examples of supports areas and support activities?

Human Development Activities

• Providing physical development opportunities that include eye-hand coordination, fine motor skills and gross motor activities
• Providing cognitive development opportunities such as using words and images to represent the world and reasoning logically about concrete events
• Providing social and emotional developmental activities to foster trust, autonomy and initiative

Teaching and Education Activities

• Interacting with trainers and teachers and fellow trainee and students
• Participating in making decisions on training and educational activities
• Learning and using problem-solving strategies
• Using technology for learning
• Learning and using functional academics (reading signs, counting change, etc.)
• Learning and using self-determination skills

Home Living Activities

• Using the restroom/toilet
• Laundering and taking care of clothes
• Preparing and eating food
• Housekeeping and cleaning
• Dressing
• Bathing and taking care of personal hygiene and grooming needs
• Operating home appliances and technology
• Participating in leisure activities with the home

Community Living Activities

• Using transportation
• Participating in recreation and leisure activities
• Going to visit friends and family
• Shopping and purchasing goods
• Interacting with community members
• Using public buildings and settings

Employment Activities

• Learning and using specific job skills
• Interacting with co-workers
• Interacting with supervisors
• Completing work related tasks with speed and quality
• Changing job assignments
• Accessing and obtaining crisis intervention and assistance

Health and Safety Activities

• Accessing and obtaining therapy services
• Taking medication
• Avoiding health and safety hazards
• Communicating with health care providers
• Accessing emergency services
• Maintaining a nutritious diet
• Maintaining physical health
• Maintaining mental health/emotional well-being

Behavioral Activities

• Learning specific skills or behaviors
• Learning and making appropriate decisions
• Accessing and obtaining mental health treatments
• Accessing and obtaining substance abuse treatments
• Incorporating personal preferences into daily activities
• Maintaining socially appropriate behavior in public
• Controlling anger and aggression

Social Activities

• Socializing within the family
• Participating in recreation and leisure activities
• Making appropriate sexual decisions
• Socializing outside the family
• Making and keeping friends
• Communicating with others about personal needs
• Engaging in loving and intimate relationships
• Offering assistance and assisting others

Protection and Advocacy

• Advocating for self and others
• Managing money and personal finances
• Protecting self from exploitation
• Exercising legal rights and responsibilities
• Belonging to and participating in self-advocacy/support organizations
• Obtaining legal services

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.

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.