1. Introduction Challenges Faced By Parents of Autistic Children Expectations of Parents of Autistic Kids..4

Transcription

1 Autism Research

2 Table Of Contents 1. Introduction Challenges Faced By Parents of Autistic Children.3 3. Expectations of Parents of Autistic Kids Therapy Programs Popular among Parents of Autistic kids Computer Software and App based Therapy Programs for Autism..8

3 1. Introduction 1 Autism is a condition which affects children from all regions and cultures of the world. Prevalence of autism ranges from a low of 21 to 31 cases of autism per 10,000 children, to a high of one case of autism out of every 1,000 children. Recent studies have suggested that the rate of autism is rising and that the occurrence is more in boys than in girls, with the ratio being 4 boys to every 1 girl diagnosed with the disorder. Some parent groups have further reported that there may be as high as 1.5 million people with Autism in the United States alone. 2. Challenges faced by parents of autistic children Parents of Autistic children face several hardships to raise as well as treat the condition of their children effectively. Some of the significant problems faced by them, which they hope will improve in the future, are as follows 2 There is usually a huge waiting list for the State Autism Treatment Assistance Programs. For example in Las Vegas s state program, the average waiting time for kids to get treated as of January was 275 days 3 48% of parents say they have waited over a year to get the right support for their child, and 27% have waited more than two years. 18% of parents have had to take legal action to get the right support for their children, and have been to tribunal an average of three and a half times each. Only half of parents (52%) feel their child is making good educational progress. 43% of young people feel teachers don t know enough about autism. 4 A 2008 study published in the journal of Qualitative Health Research, following the experiences of 14 parents of children with autism, found that a common feeling was extreme social isolation and a lack of understanding from others 5 Studies have shown that families with autistic children are more likely to encounter problems getting referrals, coordinating care, and receiving support and it thus takes longer to meet with a doctor Campaign.aspx

4 Many doctors dismiss the parents concerns or don t take them seriously, believing that parents are just being overly cautious, which draws out and delays the diagnostic process Families with Autistic children have higher out-of-pocket expenditures, experience more financial problems, and report needing more income than do families without autism due to the increased medical expenses incurred from diagnosis. Diagnostic uncertainty, combined with increased financial problems, causes stress to proliferate in parents with autistic children 6 Therapies for children are only partially covered by insurance companies, if at all, and many parents end up paying significant sums out of pocket and in rare cases, up to $100,000 a year if it's eight hours a day of intense behavioral analysis therapy. A 2007 study in the Journal of Family and Economic Issues found that some families pay as much as $30,000 per year for behavior therapy Repeated therapy sessions over prolonged periods without any significant improvement was found to create stress in parents of Autistic children Taking a child outdoors can cause tremendous emotional stress for parents because the behavioral and developmental problems of children with Autism makes them highly unpredictable and difficult to manage in public places 3. Expectations of parents of autistic kids 7 Parents of middle school Autistic students were surveyed by the National Household Education Surveys Program (NHES). Following are some of the findings The majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. When compared to parents of normal students, those of autistic students were of the view that their kids were less likely to be in a private school (9.6% vs. 13.4%) and may have to move in order to attend a specific school (17.7% vs. 21.6%) Most parents in the general population expect that their child would achieve a 4- year or graduate degree (72.7%). The parental expectations for Autistic students to obtain a bachelor or higher degree is much lower at 28%

5 88% expected that their son or daughter would work for pay, and one-half expected that he or she would live outside the home without support from anyone. It was found that family income was not independently related to parents expectations that their son or daughter would attain a 4-year degree or live outside of the home without supports. Families with higher incomes were more likely to expect that their son or daughter would work for pay 4. Therapy programs popular among parents of autistic kids There are several therapy programs available to treat children and adults with autistic disorders. Some of the more popular programs are discussed below. 8 Applied Behavior Analysis (ABA) - This is the applied research field of the science of behavior analysis, and it underpins a wide range of techniques used to treat autism and many other behavioral disorders. Behavior analysts began working with young children with autism and related disorders in the 1960s. Early techniques often involved adults directing most of the instruction. Some allowed the child to take the lead. Since that time, a wide variety of ABA techniques have been developed for building useful skills in learners with autism, from toddlers through adulthood. These techniques are used in structured situations such as a classroom lesson as well as in "everyday" situations such as family dinnertime or the neighborhood playground. Some ABA therapy sessions also involve one-on-one interaction between the behavior analyst and the participant. ABA is widely recognized as a safe and effective treatment for autism. It has been endorsed by a number of state and federal agencies, including the U.S. Surgeon General and the New York State Department of Health. 9 Pivotal response therapy- Pivotal response therapy or treatment (PRT) is a naturalistic intervention derived from ABA principles. Instead of individual behaviors, it targets pivotal areas of a child's development, such as motivation, response to multiple cues, self-management, and social initiations; it aims for widespread improvements in areas that are not specifically targeted. Though used primarily with preschool and elementary school learners, studies show that PRT can also help adolescents and young adults as well. Each program is tailored to meet the goals and needs of the individual learner and

6 his or her school and home routines. A session typically involves six segments during which language, play and social skills are targeted with both structured and unstructured interactions. As the learner progresses, the focus of each session changes to accommodate more advanced goals and needs. 10 TEACCH- This stands for Treatment and Education of Autistic and Related Communication Handicapped Children. TEACCH employs an approach called Structured Teaching, which stresses on a highly structured and predictable classroom environment and the use of visual learning. Emphasis is placed on using organized physical environments, predictably sequenced activities, visual schedules and visually structured activities, and structured activity systems, where each child can practice various tasks. Furthermore, parents are also taught to implement the treatment at home. A typical TEACCH classroom has separate, defined areas for tasks such as individual work, group activities and play. Teachers use pictures, or visual supports, to help communicate schedules to help students transition between activities. Whether used in a classroom or primarily at home, TEACCH programs have been found to be effective when parents and professionals work together as co-therapists to extend lessons and techniques seamlessly across all environments 11 SCERTS- The SCERTS model is an educational model for working with children with autism. SCERTS uses practices from other approaches including ABA, TEACCH, Floortime and RDI. The acronym SCERTS refers to the following SC- social communication - the development of functional communication and emotional expression ER - emotional regulation - the development of well-regulated emotions and ability to cope with stress TS - transactional support - the implementation of supports to help families, educators and therapists respond to children's needs, adapt the environment and provide tools to enhance learning The SCERTS Model favors having children learn with and from children who provide good social and language models in inclusive settings as much as possible. SCERTS is implemented using transactional supports implemented by a team, such as environmental accommodations and learning supports

7 12 The P.L.A.Y. Project This is community-based, national autism training and early intervention program established in 2001 by Richard Solomon, MD based on the DIR (Developmental, Individualized, Relationship-based) theory. The program is designed to train parents and professionals to implement intensive, developmental interventions for young children (18 months to 6 years) with autism. The program is operating in nearly 100 agencies worldwide including 25 states and in 5 countries outside of the U.S. (Australia, Canada, England, Ireland and Switzerland). This model is comprised of two programs: The Home Consultation Program: The Home Consultation Program is devoted to helping parents develop a better connection with their child through play with the close guidance of a trained Home Consultant. The Professional Training Program: The international training program is designed to prepare pediatric professionals to implement PLAY Project services in their communities. 13 Floortime/DIR- This approach is a developmental intervention to autism developed by Stanley Greenspan and Serena Weider. Its core precept is to understand the child's sensory differences, follow the child's lead and use these to encourage children with autism to climb up the developmental ladder. This approach is based on the idea that the core deficits in autism are individual differences in the sensory system, motor planning problems, difficulties in communication and relation to others, and the inability to connect ones desire to intentional action and communication. When addressed through a combination of sensory support and DIR/Floortime techniques, the facilitator is playfully obstructive to redirect the child to play and relate to their therapist. Exponents of the floortime approach claim that children can thus become more social, less repetitive and also develop symbolic abilities 5. Computer Software and App based therapy programs for autism

8 Advances in technology have provided educators with an abundance of new tools to use in instruction. This is no exception for teachers educating those with autistic disorder as well. From SMART Boards to ipads to the common computer, there are a number of software programs and applications that support the needs of learners with autism. The use of the ipad in classrooms for learners with autism has brought a monumental change in instruction, behavior management, and communication. There is an entire category on the education apps page devoted to special education. 14 Vizzle- This is an innovative research based program aimed at supporting the academic, social, and communication needs of learners with autism, as well as supporting the parents and educators of those children. This program is centered on easy sharing and data collection. This allows teachers and parents to save lessons and visual supports made through the program and access ready-made materials as well. This cuts down tremendously on preparation time. There is often too much extraneous information to process for autistic children when presented with a lesson from a teacher. Students are able to focus closely on the skill at hand when learning with Vizzle. 15 Model Me Kids- This app allows teachers to teach autistic children through video modeling. The videos which are part of the app, break down social skills into small steps, much like the approach in applied behavior analysis, a popular behavioral intervention used in instructing children with autism. The videos freeze at important points and use narration and graphics to highlight the intricacies of social interaction, often missed in live teaching. The developers of this app are planning to launch new software, in which students can view a conversation modeled by peers, then use a webcam to record themselves conversing with an actor. The learner can also play back his recorded video conversation to review the skill. Model Me Kids also has a free app, Model Me Going Places, based on its videos. 16 Jacobs Lesson- This is a popular website established by a father looking to create a fun and interactive program for his young child. The site notes that the activities on Jacob's Lessons are meant to be supervised by an adult to support the learner's acquisition of skills. Skills such as gender identification, identifying function of objects, and receptive object identification are all targeted and reinforced through the narrator's verbal praise. Visual cues are used to prompt the learner if he chooses the incorrect answer

9 17 Proloquo2Go - This app assists with communication for non-verbal learners. Proloquo2Go s unique features make it the premier Augmentative and Alternative Communication solution for children, teenagers and adults who need symbol support. Proloquo2Go has been used successfully with individuals diagnosed with Autism 18 Dragon Diction- Dragon Dictation is a speech recognition application for Apple's ios platforms including iphone, ipod Touch and ipad. The app provides automatic speechto-text capabilities and has changed the way children with autism participate in the classroom. This app has also facilitated easier interaction between children and their teachers and parents. 19 iautism.info- This site was started by parents of an autistic child and consists of a massive database of over 400 apps for ipad/iphone and nearly 70 for Android. The site also includes Spanish and other foreign language apps. This site has monthly visits in excess of and according to the New York Times, the peak was 1000 visitors in a day. 20 See.Touch.Learn- This is an app is aimed at an education professional or parent who is looking for a complete visual learning and assessment tool. This is based on Applied Behavior Analysis, a common early intervention therapy for autistic children. According to experts, this app has the potential to complement expensive one-to-one sessions with a therapist with self-learning sessions using a tablet

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