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Autism and its Impact on the Community, Educational System, and the Family Autism is a neurological disorder that affects a person’s ability to communicate and develop social relationships. Many times, behavioral problems are associated with autism. Recently, studies have shown that Autism Spectrum Disorders (ASD) are diagnosed in one in 150 (up from 166) children in the United States. Autism has increased at least tenfold in the past ten years, with boys being affected four times as much as girls. (Center for Disease Control and Prevention, Facts, 1) The cause of autism remains unknown. Although early detection and intervention helps change the course of autism, there is no known cure. Autism Spectrum Disorder includes autism, pervasive developmental disorder, not otherwise specified (PDD, NOS) and Asperger syndrome. It is an illness that has a huge impact on the community, educational systems, and the family in particular. First of all, ASD has a huge impact on the community. The affected child has little or no communication skills or social skills. The community has a significant problem dealing with children who do not fit into a certain mold. Social impairments are the most significant community problem for a child with autism. The social impairments are bad enough to cause serious problems in everyday life. Many children with ASD also have unusual behaviors and interests. (Centers for Disease Control and Prevention Symptoms, 1) As told by Pam Blanton-Kilgore, RN, Developmental Nurse for Early Intervention/ Babies Can’t Wait, “Children with autism usually do not speak in coherent sentences. If they do speak, it is usually a one or two word reply or response. Many children with autism repeat words they hear or use echolalia.” People with ASD have a hard time understanding others, some children may smile while saying something sad and others show no expression at all. (CDC, Symptoms, 2) Some are affected with verbal apraxia which is a disorder that affects the muscles used in speech or may be affected with a milder form of oral motor control called verbal dyspraxia. (American Academy of Pediatrics, 18) A lack of emotion or flat affect can also cause a strain on the community. Most citizens do not feel comfortable if they cannot communicate with another person. They find it very frustrating. This lack of emotion also makes it hard for a person diagnosed with autism to find or keep employment or be able to live on his own. “Problems with behavior often prevent community integration of people with developmental delays.” (Carr and Carlson, 1) Feelings of nervousness or intense fears and panic attacks are also common anxiety disorders associated with autism. Depression or mood disorders are also common with ASD. (AAP, 18) Behavior is a severe problem with most children with autism. (Journal of Applied Behavioral Analysis, 1) They do not recognize the importance of good behavior in society. Some children with autism act out while others have a tendency toward repetitive behaviors. They may get “stuck” on certain behaviors or have problems with a change in their normal routine. (AAP, 17) Marshalyn Yeargin-Allsopp, MD, Medical Epidemiologist for the Center of Disease Control and Prevention stated “Many children with ASD flap their hands or rock their bodies”. Some children with autism with spin the wheels of a truck or spin a plate for hours at a time. “Repetitive behavior is abnormal in its form, intensity, frequency, and persistence. It ranges from simple, repeated motor activities, to more complex, compulsive rituals to elaborate pseudo-academic pursuits.” (Judevine, 6) Sometimes, the child with autism will have a great memory or be very good with numbers or time. Some people with autism can keep an internal clock to the second. Acting out or yelling out is often a problem in ASD. Children with autism disorders may over or under react to pain or loud noise. They may also have abnormal moods and may not be afraid of dangerous things. They may laugh or cry without apparent reason or may show no emotion when deep emotion is expected. (CDC Symptoms, 1) Head banging may be a sign of headaches or could also be a sign of self injurious behavior associated with ASD. “Many children with ASD have a sensory integration disorder and need deep pressure stimulation. Some children with autism will bite themselves or bang their heads on floor or walls to help satisfy this need for deep pressure.” (Pam Blanton-Kilgore, RN) Children with autism may bang their head when they feel frustrated or confused. “Sometimes, the only way children with ASD may know how to ask for what they need or want is by acting out with aggression or agitation.” (AAP, 17) They may also scream out for no apparent reason. A child plagued with ASD has a very hard time with social interaction. It is easier to positively impact a child’s social interaction while he is still young. Early intervention programs are set up to provide speech therapy, occupational therapy and physical therapy to help children diagnosed with autism. These therapies have significantly improved the level of function of autistic children. The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) states symptoms such as problems with eye contact and facial expression associated with autism. Children with autism usually avoid eye contact or look at the outline of faces instead of directly in the eyes. In 1984, the incidence of autism was thought to occur in one child in every two thousand; now, studies have shown that autism affects one child in every 150. (Blackman, 12) Diagnostic tools in recent years, has helped to identify children with autism as early as eighteen months. Some of these tools are the CHAT (Checklist for Autism in Toddlers), the M-CHAT (Modified Checklist for Autism in Toddlers), and the ADOS (Autism Diagnostic Observation Schedule). Mothers of children with autism often state that their child begins to reach normal developmental milestones then begin to “lose” milestones before their first birthday. Children and adults with autism usually display a lack of affection. Most do not hug or kiss back when they are being loved on. “They may also fail to build relationships with family and peers or prefer to be alone. They usually do not form personal attachments to their parents or look to their parents as a source of comfort, security, or physical affection.” (Rutter, 1). Most individuals with autism with yell out or hold themselves stiff when affection is shown to them. Proper financial planning is important for transitioning a person with autism for future care. Autism costs the nation over $90 billion per year, a figure expected to double in the next decade but the funding for autism is only around $15 million, leaving the burden on the families.” (Autism Speak, Facts, 1) Most children with autism are cared for by their parents into adulthood. Some wind up in state care or in an institution. Institutions are very costly. If something happens to the parents, the individual with autism still has to be cared for. Other family members rarely take that responsibility. Many adult with autism are found in group homes. A special needs will and trust is very important for families with children with special needs. Social Security Income (SSI) is available to people with disabilities. It is a monthly income for people with disabilities regardless of whether they have contributed to social security. Many children with autism have other diagnoses such as attention deficit disorder, attention deficit hyperactivity disorders, seizures, tics, and other neurological or genetic disorders. Gastrointestinal disorders are also common with children with autism. Six percent of autistic children also have tics. Some medications help control tics. Other medications given for ADD or ADHD can actually cause tics. Tics are sometimes jerky movements consisting of muscle or vocal spasms. The second major impact of Autism Spectrum Disorders is on the school system. The public school system has the burden of educating all children regardless of special needs. Children with special needs cost the public schools much more per person than do children in regular classrooms. Aspergers and PDD are considered higher functioning forms of autism. Pam Blanton-Kilgore, RN states, “It has been found that Early Intervention (EI) programs such as the Babies Can’t Wait Program help change the course for a person with autism. It also can drastically change the level at which an autistic child functions in society.” An Individual Family Service Plan (IFSP) is developed by a multi-disciplinary team including the parents. This team of Early Intervention specialists many consist of two or more disciplines such as a special education teacher, developmental nurse, occupational therapist, physical therapist, early interventionist, or speech pathologist, as told by Brenda Talley, Registered Physical Therapist. Early Intervention (EI) programs work with children from birth to three years of age. After the third birthday, the multidisciplinary team (MDT) refers the child to other appropriate programs such as Head Start or the school system for special education pre-school. An Individual Educational Program (IEP) is formed for the school system. This plan included therapies, strategies, and goals to help improve the quality of education the child with special needs will receive. In the book, the Child with Special Needs, Greenspan, MD and Wieder, PH.D have suggested at least twenty hours per week of intensive face to face treatment. Educational approaches for ASD include TEACCH, Floor-time (or DIR), and ABA. TEACCH (Training and Education of Autistic and Related Communication Handicapped Children) is a special education program that caters to the needs of the individualized child to foster independence. The focus is on the design of the physical, social, and communicating environment. It was developed by Eric Schopler, R. J. Reichler, and Margaret Lansing. “The environment is structured to accommodate the difficulties that a child with autism has while training them to perform in acceptable and appropriate ways.” (Autism Speaks, 5). Because autistic children are often visual learners, TEACCH brings visual clarity to the learning process. It helps build independence and organizational skills. It can be used in conjunction with other therapies to help increase effectiveness. Floor-time or DIR (Developmental, Individual-difference, Relationship-based) is an approach also known as the Greenspan/Wieder floor-time model. This approach helps children with ASD work on their core deficits. “The DIR approach tailors the assessment and intervention to the child’s unique developmental pattern.” (Greenspan/Wieder, 2-3) “The goal of floor-time is to move the child with autism through the six basic developmental milestones that must be mastered for emotional and intellectual growth”. (Autism Speaks, 2) The six developmental milestones indicated by Stanley Greenspan and Serena Wieder’s model include self regulation and interest in the world, intimacy, two-way communication, complex communication, emotional ideas, and emotional thinking. “These basic steps form a developmental ladder; each layers new abilities onto those of the prior stage.” (Greenspan/Weider, 71) The parent engages the child at a level which the child enjoys. In floor-time, the parent joins the autistic child in his play time. A minimum of twenty hours of this face to face playtime is suggested. Applied Behavioral Analysis (ABA) is a natural science of behavior which was originally described by B. F. Skinner in the 1930s. (Autism Speaks, Treatments, 1) ABA uses positive reinforcement to build communication skills, play, social, academic, and community living skills to reduce problem behaviors in autism. Some ABA techniques are very structured while others use the child’s own interests. All skills are broken down into small steps. Learning opportunities are repeated over and over and are customized to the child’s individual strengths. Lastly but most importantly, the family is greatly impacted by a diagnosis of autism. The parents may have feelings of inadequacy. Until recently, autism was considered to be caused by poor parenting. This stigma to the family still exists today. Parents and siblings often find themselves making excuses for poor behavior or inadequate social skills by the autistic child. “The stress of adjusting to life with a child who has autism, and coping with long-term care and management, may be associated with significant psychopathology in some families.” (Gupta, 153) Many families cannot deal with the stress that comes with a diagnosis of autism. The divorce rate among families with autistic children is much greater than that of the national average. Parents are unable to do many things that they enjoyed before the child with autism came into the home. Children are often embarrassed by their autistic siblings. Many unaffected children feel that they do not receive the time and attention that the child with ASD receives. The siblings of the autistic child often find ways of special communication and interaction with their siblings. The bond is rarely as close as it is to the siblings that are unaffected by ASD. Autism Spectrum Disorders are thought to be a genetic neurological disorder. Many times there is more than one child in the home with an autistic spectrum diagnosis. Each child with autism responds differently. “In families of an autistic child, the risk to siblings tends to be greatest in small families. In larger families, the burden can be more easily shared and compensated for.” (“Living with Impairments” 3-4). Older children with siblings with autism tend to help out and deal more positively to their younger siblings with autism. The younger children often feel left out. The incidence of more than one child in the home with autism or an autism spectrum disorder is great. “In the case of the family with an autistic child, it is important to be aware of the risk for the other children in terms of problems with language-related or learning skills. These are much less serious than the problems of the autistic child, but statistically the chances of them suffering more problems than average in these areas are considerably raised.” (“Living with Impairments” 8) Many “typical” children in homes with an autistic-related diagnosis will have speech problems or other learning disabilities such as ADHD. The burden of care follows more heavily on girls than boys, because girls tend to nurture. Studies have shown that if the burden of care is not too high and parents accept the problem, the siblings will react in a more positive way than they would if the child with autism is viewed as impaired or disabled. If the parents are able to communicate freely with the other siblings about the effects of the disorder on the family, the other children tend to adjust in a more positive way. Many siblings of children with autism end up caring for their sibling during adulthood. Since Autism Spectrum Disorders have such a huge impact on the community, educational system, and the family, researchers should take greater measures to find a cure for this group of disorders. Autism strikes in epidemic proportions. “A child will be diagnosed with autism every twenty minutes. Sixty-seven children will be diagnosed with an Autism Spectrum Disorder every day.” (Autism Speaks, Facts, 1) Finding a cure will benefit each individual, decreasing tax dollars for care of this disease. Each person can help by joining fundraising walks and increasing awareness of autism. Each individual should do their part to Cure Autism Now.