Autism: The Needs of Children and Families - Research Paper Example

 Introduction Autism has been a vague disability that many scientists have tried to make sense of throughout the decades. One reason might be because those who suffer from autism do not have physical or facial deformities that are easily recognisable, in most cases, autistic children even possess an uncanny beauty that makes them seem all the more normal (The National Autistic Society 2008a; Whitman and Kingsley 2004, p. 13). Because of this, children who are autistic are thought to be just “naughty” or sometimes even “slow” (The National Autistic Society 2008a). It was only in the recent years that scientists have had an understanding of what autism really is. Because of this, there has been an increase in awareness about it and the children and people who suffer from it. This is primarily due to the media’s interest in the complex disability, wherein it has been used in popular films like Mercury Rising and What’s Eating Gilbert Grape (Whitman and Kingsley 2004, p. 13). Autism is certainly a very difficult disability to live with; and parents and families have to learn how to cope with this—to understand their autistic children’s needs, as well as their own. This paper will discuss the needs of children diagnosed with severe autism and the needs of their families. Defining Autistic Spectrum Disorders (ASD) Autism, even today, baffles scientists in its complexity and the intricacy of its origin. Until now, scientists and doctors cannot pinpoint the exact source of this disability, whether genetic or environmental. It is now thought that a combination of genetic and environmental factors cause autism, although this theory still lacks considerable concrete evidence (The National Autistic Society 2008a). What researchers have managed to do over the years is to eliminate bad parenting and social upbringing as factors that cause autism (The National Autistic Society 2008a). The exact origins of autism remain unclear up to this day. It is a “life-long social disability” that people are diagnosed with more and more everyday (Hyun-Jin Choi and Nieminen 2008). There is no singular medical and physical test, like a blood test or x-ray that can diagnose autism, the signs and symptoms are observed as a way of detecting it and they are usually evident as early as 9 months and more accurately when a child is between 2-3 years of age (Lewis, 2003 p. 465). Simply put, autism can be defined as “a set of neurodevelopmental disorders in which the way that a person communicates and interacts with other people is impaired” (Medical Research Council 2001, p. 7). It must be noted here that severe autism is part of a spectrum, more commonly known as the Autism Spectrum Disorder (ASD), which encompasses “a range of ability levels and severities, but characterised by qualitative impairments in social, communicative and imaginative development” (Medical Research Council 2001, p. 7). Severe autism, Asperger Syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), also known as atypical autism, are three developmental disabilities that make up the spectrum (National Institute of Child Health and Human Development 2008). Characteristics As discussed earlier, severe autism is a part of a spectrum in that this autistic child may exhibit these types of characteristics, at a certain level, while another might have a different set of characteristics at another degree. Furthermore, the impairments that autism presents may have different effects on different children (The National Autistic Society 2008a). In order to distinguish between the three different disorders belonging to ASD, the triad of impairments must be discussed, as this is the primary standard wherein diagnoses are most often based. However, it must be noted that there are other characteristics of autism other than the three that will be discussed. They are: sensory processing problems (eg. hypersensitive and hyposensitive); motor dysfunctions (eg. clumsiness); arousal/activation problems (high emotional reactivity, hypersensitivity and hyposensitivity); repetitive, restricted and stereotyped interests, activities and behaviors; and behavior problems (eg. non-compliance and aggression) (Whitman and Kingsley 2004, p. 52). These are but a few of the specific characteristics of autism that are not included in the triad of impairments—things that parents and families with autistic children and adults should also watch out for. The Triad of Impairments The triad of impairments is the three primary areas most affected by autism. These are verbal and non-verbal communication, reciprocal social interaction and restricted repetitive and stereotyped patterns of behaviour, interests and activities or more generally known as social communication, social interaction and social imagination, respectively (The National Autistic Society 2008b). Social Communication Those within the autistic spectrum disorders usually cannot communicate effectively using verbal and non-verbal communication. Examples of common speech problems of autistic individuals are: (1) echolalia or just repeating what the other person is saying; (2) repeating specific phrases that they have associated with a particular action or request, failing to integrate the use of correct pronouns, for instance, saying “Do you want milk?” instead of “I want milk;” and (3) Missing necessary articles that link words to form coherent sentences, for example, saying “want drink milk” instead of “I want to drink milk” (Gillson, 1999). Furthermore, they have a lot of difficulty understanding speech when it comes to intonation, homophones (eg. piece and peace), and idioms (Gillson 1999). ASD goes past speech impairments, as non-verbal communication, such as gestures, eye contact and body language, are also problems (Gillson 1999). Many of those diagnosed with severe autism cannot even speak; while some are able develop basic speech patterns and incomplete sentences to communicate what they want and/or need (Markman and Wittig 2007). This difficulty in verbal and non-verbal communication seems to lock severely autistic children in a world of their own. Social Interaction This generally indicates that those diagnosed with autism have problems with reciprocal communication, which means that they cannot really engage in a meaningful and spontaneous conversation and their participation in conversations are passive in nature (The National Autistic Society 2008b). They cannot even maintain eye contact that is customary to people conversing with each other (Lewis 2003, p. 466). That is why the sentence “look me in the eye” has become popular with parents talking to their children diagnosed with autism. People with autism also take the meaning of sentences literally; hence, they cannot understand and identify with facial expressions, tone of voice, jokes and sarcasm, and common slang, sayings and expressions (The National Autistic Society 2008a). They oftentimes cry, scream or throw tantrums whenever they want something, tantrums that are indications of their difficulty expressing what they want and/or need (Lewis 2003, p. 466). All of these hinder autistic persons in being able to socially interact with their families and peers. Those diagnosed with severe autism exhibit “no verbal communication or highly unusual communication” and are the least likely to become independent by means of being able to effectively communicate to others their needs (Markman and Wittig 2007). As with the triad of impairments, severe autism exhibits the most difficult of symptoms and behavior to deal with. Social Imagination The ability to imagine one’s self in another person’s shoes (maybe a superstar or the president of a country) and visualizing something as real (for instance, a doll for a real baby) are key developmental stages that a child goes through. However, this is not the case for children with severe autism as they lack the capacity to engage in pretend play and other such imaginative activities (The National Autistic Society 2008b). Instead, they engage in simple repetitive stereotypical activities like rocking back and forth, watching the spinning of wheels of cars even if they look like they are imagining driving a real car, habitual and what seems to be an obssessive compulsion to turn lights on and off, the lining up of toys, etc. (Gillson 1999). “The lack of imaginative play leads to limited or not understanding of other people's emotions, so people with autism find it difficult to share happiness or sorrow with others” (Gillson 1999). Implications on Families and Children The changing environment and structure of families make it more difficult to raise children (Whitman and Kingsley 2004, p. 233). Technological advancements like the internet further add to the chaos as they present children with more avenues for destructive learned behavior. Furthermore, many gadgets and appliances make the home a lot less safe than before (Whitman and Kingsley 2004, p. 233). It can be seen here how raising a ‘normal’ child is more difficult than before, much more when it comes to rearing an autistic child with special needs. Stress is the first and foremost thing that comes to mind when exploring the implications of autism on families. It is a disability that starts early, upon diagnosis at ages 2-3 years of age, and involves a lifetime of caring for the child as autistic children rarely grow up to become self-sufficient (Whitman and Kingsley 2004, p. 233). The diagnosis itself presents an immense amount of anxiety and tension as parents and families often feel grief over it and most of the time they even pass the stage of denial (Whitman and Kingsley 2004, p. 236). After acceptance comes the hard part of finding out everything about autism and hoping for a cure; and then being devastated after finding out that there is no curem, as most doctors would say that. Everything has to change in order to make space for their autistic child. And of course, with change comes stress. Moreover, the time and attention given to autistic children should not be given sparingly; and thus, parents and siblings experience a tremendous amount of stress—not to mention the financial problems that may occur in order for their needs to be met. The time and energy of parents are almost spent caring for their autistic child, causing their other children (if any) to feel neglected and even develop depression and anxiety problems (Rudy 2008). Evidently, the implications of autism on children who are diagnosed with it are great, especially in the case of severe autism. As explained in the previous sections, severely autistic children are locked in their own worlds and cannot function normally in society. Hence, they are forever dependent on the understanding and patience of the people around them so that they, too, can experience what life has to offer. Herein lies the significance of understanding and attending to the needs of families, as well as autistic children. The Needs of Children Due to the complicated nature of the disorder, the needs of an autistic child are numerous and complex. Specific needs of these special children would mean preparing the child for any changes in the home, using simple language they can understand and repeating them patiently when needed, and adhering to a set of daily routines for the child to follow, to name a few (Arnold 2007). Parents may use pictures to teach children about concrete and tangible things; for instance, teaching an autistic child to ask for his shoes will constitute the parents repeatedly showing the child a picture of a pair of shoes and how this ia what the child wants (Gee 2009). To further help autistic children with their communication skills, parents and families can also use board games as they are “excellent for teaching simple social skills like sharing and turn-taking” (Scott, 2009). Aside from these specific needs, the most important needs of a severely autistic child are patience, understanding, and the acceptance and willingness of the family members to adapt to the child’s unique needs. These children are not “impenetrable walls,” it just takes time and a lot of patience to be able to get through to them (Sinclair 1993). It is when these are met that the child and the family can move forward to address the child’s very specific requirements. The Needs of Families Guralnick (2000 as cited in Whitman and Kingsley 2004, p. 239) explained that understanding the needs of families of autistic children lie in the stress presented by these events and responsibilities: (1) seeking and making sense out of an enormous amount of information; (2) receiving a diagnosis; (3) time and money resources; and (4) maintaining a sense of control. Thus, the families’ needs rest on the challenges of dealing with autism, learning about it, finding the right services and approaches for intervention, financing the needs of their children, and coping with social stigmatization, changes within the roles and structure of the family and the everyday challenges that come with an autistic child (Whitman and Kingsley 2004, p. 239-240). Generally speaking, the needs of families stem from the inevitable call for their adjustment and adaptation to living with and raising a soecial child (Bristol 1984, p. 306). These needs can be met by a holistic approach to autism wherein both the needs of the child and the family are met through an educational intervention that maximizes the improvement in the former and ensures the understanding and cooperation of the latter. Evidence-Based Approaches to Autism Approaches to autism have developed over time and new techniques are being created as research into this developmental disability has become more and more focused and accurate. Aside from focusing on the special capabilities of the autistic child, parents and family members have become “the most important resource and the most effective factor in promoting changes in the child’s behaviour” (Schopler, 1987 as cited in Panerai, Ferrante and Zingale 2002, p. 318). Habilitation Approach This approach to intervention and education operates on the treatment of autism as a lifelong disorder, not as a mental disease—the negative effects of which can be improved and reversed into becoming socially useful activities that can lead to autistic persons being able to live quality lives (Schopler, Yirmiya and Shulman 2001, p. 17). It is geared towards optimal adaptation through the focus on developing skill acquisition and environmental accommodation (Schopler, Yirmiya and Shulman 2001, p. 17). Although it must be noted that the results of the programs within this approach is highly dependent on the standing of the individual on the autism spectrum and consequently, the severity of their impairment, Schopler, Yirmiya and Shulman (2001, p. 17) state that “optimum adaptation may be in the form of successful attendance in graduate school, living independently with supported employment, or effectively participating in a sheltered workshop.” Although it can be seen here that the focus is on the child, parents are also given much importance as new programs have been created to concentrate on their needs so that they may be able to successfully facilitate their child’s optimal adaptation, making the approach more comprehensive. Early Intervention Early intervention programs aim to “bridge the potential gap between an early diagnosis and educational placement” as participation in these programs may yield a more favorable outcome when it comes to successful integration in mainstream schools (Shields 2001, p. 49). Chandler, et al. (2002) developed a diagnostic and intervention package for 2 to 3-year-olds with autism through a concentration on the identification of the “pragmatics of language” in every child. This type of early intervention takes into consideration the deficits that autistic children have that hamper their communicative skill acquisition, while taking into consideration environmental factors within the home and how these can be enhanced to better tackle and overcome the triad of impairments (Chandler, et al. 2002). These pragmatics include body language, listening skills, intonation and reciprocal turn-taking, among other things (Chandler, et al., 2002). It is in prioritising which of these deficits a particular autistic children has that it can be addressed more successfully (Chandler, et al., 2002). It is assumed that in bridging the gap of social communication, social interaction and even social imagination may follow. The use of pictures and visual aids in the attempt to bridge the communication gap between parents and teachers of autistic children is also a program that aims to smooth the progress of skill acquisition, while considering the factors of the environment. The Picture Exchange Communication System (PECS) developed by Bondy and Frost “aims to teach spontaneous communicative skills within a social context through the use of symbols or pictures” (Magiati and Howlin, 2003, p. 298). This primarily deals with autistic children’s impairment in social interaction as children with little or no speech are encouraged and taught how to initiate meaningful conversations (Magiati and Howlin 2003, p. 298). This is a form of early intervention as it facilitates effective communication skills when the autistic child is still young, through the use of pictures. It attempts to enhance social communication in the hopes of developing social interaction. TEACCH The Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) is a “comprehensive state-wide community-based programme of services for children and adults with autism and other similar developmental disorders” since 1972 (The National Autistic Society 2008c). Since then, it has developed numerous education-based intervention programs, such as individual schedules, individual and group work systems and a high degree of family involvement, that endeavors to achieve optimal adaptation through unique teaching methods within a structured learning environment that specifically targets the attainment of appropriate skills within the autistic child’s age range (Autistic Connect n.d.). This is a comprehensive and individualistic approach that is geared towards an improvement in all the areas within the triad of impairments, which makes it more effective than others when it comes to effecting changes and improvements in autistic children (Panerai, Ferrante and Zingale 2002, p. 326). This can be seen in how it is used, for more than thirty years, as one of the teaching methods that is effective when it comes to reaching autistic chidren. It has been roven effective in teaching autistic children social communication skills that help them be able to successfully interact with the people around them. The structured learning environment also fosters social imagination when the child has been proven to be able to communicate effectively. The Minimal Speech Approach Addressing the impairments in social communication and social interaction, this approach employs little to no speech when attempting to communicate with autistic children in order to take into consideration and address the fact that many autistic children have difficulties understanding spoken language and have problems speaking themselves (Joseph Rowntree Foundation 2001). It proposes that “adults should consistently use only one or two relevant concrete words when interacting with children who understand little speech” (Joseph Rowntree Foundation 2001). This has been proven effective as studies showed that when the minimal speech approach was started, autistic children became more receptive and even initiated spontaneous communication (Joseph Rowntree Foundation 2001). However, what this approach lacks is the inclusion of the impairment of social imagination. The Proximal Communication Approach Whittaker and Reynolds (2000) explained the proximal communication approach as it has developed throughout the years as effective when trying to induce reciprocal and spontaneous non-verbal communication that imitates actual play. Their study showed that physical proximity and the initiation of hand signalling, such as tickling and cuddling, that emulate ordinary play actions of healthy children produce a much higher incidence of autistic children inititiating and engaging in the play (Whittaker and Reynolds 2000). What this approach does is it focuses on the development of non-verbal communication and responsiveness—something that is not normally touched on in other approaches as they are too engrossed in improving speech and verbal interactions. Inclusion Inclusion pertains to an educational approach that aims to include and integrate autistic children in mainstream schools (Batten, et al. 2006). Recent studies on inclusion suggest that this is not what is actually happening. Although there are a high number of autstic children attending mainstream schools in the UK is high, inclusion cannot be viewed as a successful program as the limited research base in this area indicates that school is a stressful and anxiety-provoking place for many such pupils, with social isolation, loneliness and bullying commonplace” (Humphrey and Lewis 2008). It is ironic that the approach that best encompasses the confrontation of the triad of impairments can produce the opposite effect in that inclusion seemed to breed further exclusion. This means that there is a call for more intensive and specific training programs for teachers, policies, and awareness in order to fulfill the criteria of inclusion and ultimately meet its ends. Some strategies that can be used to promote the inclusion of autistic children in regular schools is the teaching of communicative and social competence, the use of instructional strategies that maintain the natural flow of classroom activities, the teaching and provision for opportunities for independence, the proactive and systematic building of a classroom community that includes all children and the promotion of generalisation and maintenance skills (Schwartz, Billingsley and McBride n.d.). These strategies will equip an autistic child to be able to fit in a regular classroom and not be excluded. Conclusion Through the comprehensive discussion and analysis of severe autism and evidence-based approaches to intervention and education that aim to address the triad of impairments, it can be seen that although much progress has already been made in the study of autism, more is still needed. For one, its origin is still unclear. Secondly, many of the evidence-based practices covered above still needs a solid foundation and a bigger sample that can better substantiate their claims. And third, policies still need to be enacted that will not only safeguard the interests of autistic children and their families better, but more importantly, incorporate research into practice. However, despite these needs, it must not be ignored that much headway has already been achieved in recent years; it is just that the autism spectrum is highly complex in nature, so complex that even a myriad of scientists and researchers from all over the globe has not come up with definite solutions References 1. Arnold, J. 2007, Understanding the Needs of the Autistic Child, [Online] Available from: < http://ezinearticles.com/?Understanding-The-Needs-Of-The-Autistic-Child&id=633429> [Accessed February 23, 2009] 2. 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A. and Reynolds, J. 2000, ‘Hand Signalling in Dyadic Proximal Communication: Social Strengths of Children with Autism Who Do Not Speak’, Child Language Teaching and Therapy, vol. 16: pp. 43-57. FEEDBACK: 1. Whilst you have included some interesting and relevant literature, unfortunately, there continue to be major difficult with this work because you have nit addressed key aspects of the requirement if the assignment. Most importantly, you have not specified which group of children you were going to be looking at. Much more discussion was needed on the triad of impairments and approaches to addressing your chosen group of children’s needs in each area, drawing on key themes and interventions introduced within module. For example, you need to discuss approaches to developing communication and socialization skills in you chosen group of children. You needed to refer to the implications of models of disability in the field of autism, again referring to module material to enable you to do this. 2. Again, although you have referred to a relatively wide range of literature, points made were in areas not sufficiently relevant to the question. 3. You have a relatively clear introduction but greater signposting was needed between sections. 4. Again, much greater attention was needed to matters of grammar. Read More