Assessment for Parents of Children with Autism - Research Proposal Example

Title Assessment For Parents of Children with Autism Author Rehab Alrajhi Institution Table of Contents Table of Contents 2 Assessment for Parents of Children with Autism 2 Introduction 2 Executive Summary 3 Literature review 3 Objective of the study 4 Significance of the study 4 Research questions 4 Study design 5 Sampling techniques and sample size 6 Data collection techniques 6 Ethical considerations 7 Data analysis 7 Conclusion 10 References 11 Assessment for Parents of Children with Autism Introduction In 1979, Lorna Wing and Judith Gould conducted an epidemiological study on children living in Camberwell, London and found out that some children had social, verbal, and non-verbal impairments a condition which they described as Autism. They described autism as a persistent developmental disorder of the brain functions which hinders a person from organizing and understanding information and affects social interactions (MacKenzie, 2008). Early diagnosis of autism is crucial as it assists in early intervention integrated with other proven behavioral therapies and this can improve the overall outcome. Executive Summary Parents being the first caregiver of children, usually notice some signs that are associated with the disease for the first two years of children in their lifetime. It is important to note that the signs normally develop gradually, as they regress. Although no cure has been found, it has been noted that intervention can help the child to cope up well with his own life; these may include communication and social skills interventions through speech therapy (MacKenzie, 2008)Therefore, this assessment which targets parents whose children are affected by autism will help create levels or categories that cover all parents and it will provide them with options of the services they require such as whether to involve specialists, whether training is necessary among others. A study was conducted among parents of children with autism and then the data collected will be analyzed and documented. Literature review Knowledge and information is very much essential for parents to determine the kind of services they would require in the pursuit of dealing with Autism for their children. A study carried out by researchers from the Allen Institute for Brain Science in Seattle, U.S, found that approximately 1 in every 88 children in the U.S. are affected by one of the autistic spectrum disorders which ranges from classic autism to the mild form, Asperger syndrome (American Psychiatric Association, 1980). The studies further suggests that in children diagnosed with autism their genetic networks that are responsible for regulating prenatal brain cell developments are faulty (Wilkinson, 2010). Autism-Europe an international organization which aims at advancing and promoting the rights of people with autism together with their families’ states that early intervention and consistent training helps improve the quality of life of the victims. Autism Europe plays a very important role in improving public awareness and influencing nations on all issues related to the rights of people with autism (Dawson & Osterling, 1997). Objective of the study The survey will be conducted to assess the different levels/categories of autism in children and document the results from the study in conjunction with other findings and experiences aimed at providing the parents of such children with the services they need to care for the children at each level and also the training they require. Significance of the study The findings will be documented and made available to all parents in Saudi Arabia whose children are affected by autism and from the results; the parents can then choose the relevant service in relation to their case. The results will also be used as a platform for raising public awareness and influencing decision makers on all issues and concerns related to the rights and freedoms of children with autism. Research questions The ones below are going to be used in your methods but what are your research questions The following are the questions that will form the guidelines of the whole survey from which the data collected will be documented (Schopler, 2001). i) What were the first signs? ii) When did the symptoms occur/at what age iii) What measures did you take? iv) Did you seek the services of an intervention specialist, or a doctor, or a psychologist? v) Does the government fund for autism intervention programs? vi) As a parent, how were you affected after your child was diagnosed with autism? vii) Did you attend any autism intervention training? viii) Who can get Autism Intervention Program services? ix) Do you have other child with Autism? Study design A comprehensive study methodology will be employed to collect data that is relevant to the objectives and describe characteristics of the situation. Data will be collected by word of mouth from all parents or caregivers who their children have been diagnosed of autism or their children are showing signs of the disorder. Before the actual collection of data, there will be extensive awareness on the importance of this activity on national radios, TVs and even social media where parents affected will be asked to come out and provide information on the same issue. After the study, all children including those whose parents did not participate were subjected to standardized tests to diagnose autism and at the same time the medical professionals also conducted another test to determine the severity of the disorder. This test is called Childhood Autism Rating Scale (CARS) whose results in conjunction with the data recorded were used to come up with findings and documentations on the levels and categories of autism (Reichler, et.al 1986). In addition, CHAT (Checklist for Autism in Toddlers) model which was first applied by Simon Baron-Cohen who was a director of Autism research Centre at the University of Cambridge is also applied. This quick test to all children at 18 months old is used to check if a child shows behaviors like pointing or joint attention. Absence or delays in such is one indicator of risk of diagnosis of autism (Baron-Cohen, et.al, 1985). Study area and target population The study targets all parents whose children have shown signs of autism or have already been diagnosed with the disorder. The main idea is to obtain data and facts about autism which will then be analyzed and the final results made available to the public. There is no specific area targeted but all willing parents from any region within the country are encouraged to participate in the countrywide activity for their own benefit. Parents whose children have exhibited the following signs are invited to participate: i) No smiles or other joyful expressions when the child reaches six months ii) No babbling at the age of one year iii) No words by around 16 months iv) No sharing of smiles, sounds or other facial expressions by 9 months v) No back and forth gestures like pointing, showing or waving by 12 months vi) Any loss of social skills, speech or babbling at any age vii) No meaningful two-word phrase by 24 months. Sampling techniques and sample size The purpose of determining the sample size is to make inferences concerning a population from the sample selected. Since it is unrealistic to gather data from the whole population, a sample size of 100 parents was targeted. Random sampling technique was employed to select the parents to be interviewed. Parents whose children were between 12 months and 4 years were preferred. Data collection techniques Data was collected using two techniques: face to face interviews and the use of structured questionnaires. The structured questions in the questionnaires were the exact questions asked in the face to face technique. The techniques were selected depending on ones choice and levels of literacy. Ethical considerations Ethical clearance to undertake the study will be sought from the relevant authorities. The go ahead to collect data from the community will be obtained from the provincial administration leaders. Informed consent will then be obtained from the subjects and confidentiality will be maintained throughout data collection and thereafter. Work schedule The study is expected to take more than one year for the data to be collected, recorded and results documented. Data analysis After data collection, a substantial analysis of the data combined with the general knowledge of autism and other findings from previous studies will be undertaken. CARS rank autistic symptoms on a scale of 1 to 4 where rating number 4 is the most severe. If the child received a higher score on the CARS assessment, then he or she was diagnosed with severe autism. On the other hand, if they receive a lower score, then they were diagnosed with mild or high functioning autism. The following levels/categories of autism were identified (Reichler, et.al 1988). Severe/ low-functioning autism After substantial analysis from the survey, the following characteristics were seen in children with severe autism. i) Impaired cognitive and mental functioning-Children with high rating are understood to have a certain degree of mental retardation with an IQ of even below 70 and other adaptive behavioral problems like communication and self-care. ii) Such children are socially unreachable and found difficult to interact with them and sometimes they even lose attention completely. iii) Children in this spectrum are non-verbal and cannot communicate with people even at the age of 3 years. Those who are verbal have much difficulty using words for communication (Mackenzie, 2008). iv) Those with low functioning autism have unusual and repetitive behaviors which may affect daily activities and if forced to change their routine they may become very angry. Moderate autism and ADOS training. Children with moderate autistic show the following characteristics i) Persons with moderate autism have a certain degree of mental retardation but the IQ is relatively higher at about 100. These children find self-care responsibilities challenging. ii) These children may be verbal but still find it challenging to communicate in a typical manner. Mostly such children communicate through signs. iii) They may be over or under sensitive to stimulations like sounds and sights and they tend to resist to changes in their normal routines and exhibit funny behaviors like flapping, spinning in toes or even walking on toes among others. iv) As the child grows he may appear aloof and may not be socially active and try not to interact with fellow children. Nonetheless, such children are generally aware that someone is in the room. Mild autism/ high-functioning Children with high functioning exhibit the following characteristics. i) Children with mild autism were found to have normal intelligence and in other cases their IQ increases to above normal as the child grows. Despite all this, they may be found struggling with some responsibilities that requires them to change normal routines. ii) They are verbal but some are sometimes found to struggle with functional communication and even their tone of voice may appear odd or robotic. iii) They may show resistance to routine and other repetitive motions despite being ranked with high functioning autism and they are unlikely to disrupt other people with these behaviors. They may have some sensory concerns as well. iv) Children with mild autism may be found struggling with social interaction aspects like eye contact, interpreting body languages and other tones of voices, maintaining continuous conversation, and interacting with others at a certain age level. They may have difficulties when taking the perspective of others. Under each level/ category of autism, parents are advised to offer the following services to their children (Bartolucci, et.al, 1989). Severe Autism i) An early intervention program is necessary once the child exhibits the above symptoms. ii) The intervention gives the child a great deal of therapy and this should mostly be implemented at home to teach the child the right behaviors and increase the chances of fulfilling his or her potentials. Such therapy may include language and speech therapy, physical therapy, and psychological therapy. iii) The parent should also set object measurements to evaluate if the child is making progress. iv) The child should be rewarded for good behaviors to motivate them. v) Free space where the child can relax and feel secure should be created. vi) The parents should educate themselves on autism and talk to other affected parents, consult specialists and read the literature. Moderate autism The following services may be offered to children of moderate autism by their parents (Dyches, 1998): i) Provide routine programs for the child ii) Give the children responsibilities iii) Encourage them to form friendships groups iv) Use of ICT like some modified soft ware v) Showing them how things are done vi) Plan and break down work into manageable tasks on behalf of them Mild/High functioning autism Although high functioning autism is not a disorder a child can grow out of, there are certain treatments and services offered by their parents that can help a child learn a variety of new skills and overcome some developmental challenges. Parents can offer the following services may include (Dyches, 1998): i) The parent should enjoy the child’s special quirks, reward them for small successes, and love them unconditionally ii) Be consistent with home therapies to reinforce learning iii) Find out what triggers the kid’s disruptive behaviors iv) Prepare a home safety zone where the children can relax and feel secure v) Don’t give up on the child vi) Visit a therapist if affected by depression and stress vii) Assist them to stick to a highly-structured schedule Conclusion The level of autism or the functioning level of a child can dramatically change with the right the right treatments and therapies. Early intervention programs improve the IQ of a child by an average of even more than 10 points. In addition, if the interventions are initiated before the age of 3 years, social functioning, language usage, adaptive behaviors may be improved. All these practical adjustments may improve the child’s overall functioning level. This study helps is a big platform which will help parents on how to take care of their autistic children and improve their life as well as bringing some sense of hope to them. Several surveys should further be conducted so as to evaluate the results of this study as well as consistently increasing awareness campaigns on autism among families. References American Psychiatric Association. (1980). Task Force on Nomenclature and Statistics. Diagnostic and Statistical Manual of Mental Disorders. 3rd Edition. Washington DC: American Psychiatric Association. Baron-Cohen, S., Frith, U., & Leslie, A. (1985). Does the Autistic child have a ‘theory of mind’? Cognition, 21, 37-46. Bartolucci, G., Bond, S., Bremner, R. Rich, S. & Szatmari, P. (1989). A follow-up Study of High-functioning Autistic Children. J Autism Dev Disord 19: 213-225. Dawson, G., & Osterling, J. (1997). Early intervention in Autism . In the Effectiveness of early intervention, pp. 307-326. Baltimore: Paul H. Brookes. Dunlap, G. (1999). Consensus, engagement, and family Involvement for Young Children with Autism. The Journal of the Association for Persons with severe Handicaps, 24, 222-227. Dyches, T.T. (1998). Effects of Switch Training on the Communication of Children with Autism and Severe Disabilities. Focus on Autism and Other Developmental Disabilities, 13, 151-162. MacKenzie, H. (2008). Reaching and Teaching the Child with Autism Spectrum Disorder: Learning Preferences and Strengths. London: Jessica Kingsley Publishers. Reichler, R., Renner, B. & Schopler, E. (1986). The Childhood Autism Rating Scale (CARS): For Diagnostic and Teaching Curricula for Autism . Diagnosis and Teaching Curricula for Autism & Developmental Disabilities. New York: Irvington. Reichler, R., Renner, B. & Schopler, E. (1988). The Childhood Autism Rating Scale. Los Angeles, CA: Western Psychological Services. Schopler, E. (2001). The Research Basis for Autism Intervention. Berlin: Springer. Wilkinson, L. (2010). A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools. London: Jessica Kingsley Publishers. Read More