Chapter 15, The Environment in Autism Spectrum Disorders
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View Basket. Buy Voucher. Consultations with relevant stakeholders are recommended to increase the rigor of scoping reviews [ 47 , 48 ].
Yet, descriptions of how to do this are generally vague. The authors presented the emerging results to three groups of stakeholders in connection with this research: adolescents and young adults with ASD, parents and professionals. Seven persons were asked whether the results reflected their experiences, if they disagreed or whether any aspects were missing. The findings are reported in the Results section. The scoping selection process started with studies being retrieved from databases, 31 of which met the inclusion criteria.
All 31 articles are listed in Table 2 , indicating numbers of participants, research questions, methodology used, social roles, activities, and environment identified, and the main results. Column three provides information about combined intellectual disability as described in the studies. The types of journals, the countries where the studies were performed, and information about the designs is provided in Table 3. Table 4 offers more detailed information about the content of the 31 studies.
Results comprise a total of 20, adolescents with ASD. The number of participants ranged from 1 [ 55 , 56 ] to 17, [ 57 ]. In all, 13 different social roles of adolescents with ASD were identified. They are described here with seven subthemes see Fig 2 , each of which comprises supporting and hindering aspects. Three subthemes were found crucial in providing security. More specifically, higher self-esteem and optimism on the part of the mother contributes to participation [ 58 , 59 ], as it encourages taking risks and developing positive connotations about participation.
Hence, the stability of the relationship with the mother during adolescence and adulthood is described as crucially important [ 58 ]. A further supportive aspect is when parents understand and adapt to the security needs of their children [ 58 , 60 — 63 ]. For instance, one boy stated that he would only leave the house for communal leisure participation after his parents had checked that it was safe [ 62 ].
As regards the location of activities, adolescents with ASD prefer home-based activities like watching television, playing in the garden, playing computer games, or surfing the Internet. This tendency becomes even stronger as they grow older [ 57 , 62 ]. To provide security and thus support participation, it is prudent for parents to explore environments beforehand [ 64 — 66 ]. For example, they may check out a future school environment, or they can inform themselves about assisting programs for learning to drive.
Physical environments involving bright lights, unusual noises, darkness, crowds, queues, or unfamiliar places are often described as intimidating and overwhelming, thus as hindering participation [ 60 , 61 , 66 — 68 ]. Authors of two studies judged noise sensitivity to be the chief problem [ 66 , 69 ]. Pupils at school lose concentration, which affects learning [ 69 ].
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In public spaces, such as during transportation, or when attending a cinema, adolescents feel offended, disrupted, and thus victimized, when they are passively exposed to the overwhelming condition of noise. In school settings, calmer spaces like libraries are reported to be preferred by adolescents with ASD [ 70 ]. As regards outdoor physical activities, certain elements of nature, such as insects or weather conditions, are reported as barriers [ 71 ], while in hospitals, being touched frequently and hearing unusual noises are perceived as discomforting or can evoke panic [ 72 ].
Control of noise, but also of lighting or spaces provides security through agency. Availability of quiet areas such as school libraries, light dimmers, volume control of sound systems in public spaces, and repositioning of chairs to control space are supportive environmental conditions [ 59 , 66 — 68 ]. A higher participation rate has been reported for regularly scheduled and structured activities [ 22 , 75 ].
New situations, for example when starting a new job or attending a new sports facility, are described as a source of unease and instability [ 66 , 68 , 71 , 73 , 76 ]. Accessible and processable information become imperative environmental conditions for participation. Knowing what to expect beforehand allows these adolescents to plan their participation and engagement in physical activities[ 71 ]. When understanding, interpreting, and reacting to social demands are difficult for these adolescents, they feel intimidated by their environment [ 66 — 68 , 77 ].
It is difficult, for example, to understand the subtleties of social interaction between peers, or to perform multitasking demands e. Providing information sequentially, for example as visual cues without time limits, allowing typing instead of handwriting, or teaching skills in small steps, ensures that information can be processed and thus provide both security and participation [ 18 , 64 , 65 , 67 ]. For the same reason, preparing adolescents mentally for new participation challenges supports participation. Additionally, adolescents with ASD know little about ways to access leisure activities [ 62 ].
After they leave high school, structured social activities of adolescents with ASD decline significantly [ 75 ]. Informing them beforehand, for example using video games or toy tractors as a basis for learning to drive, or visiting a new school before the transition is made, have also been described as supportive [ 64 — 67 ].
Since bullying is a frequent participation issue for adolescents with ASD, information about anti-bullying policies needs to be provided explicitly to these adolescents.
Social-emotional impairment and self-regulation in autism spectrum disorders
This includes explanations of effective implementations, as an understanding of both contributes to their sense of security and supports participation [ 67 ]. Four different subthemes have been found to be central in helping them to connect. Besides siblings, these are mostly adult social partners who support the aim of social participation and activities in the community. Shared family activities like watching TV, attending church services, or performing leisure activities, have been described as supportive for participation [ 22 , 73 , 76 , 78 , 79 ].
Specifically, community participation like going shopping or engaging in sports seems directly linked to a sharing familial environment [ 59 , 60 , 73 , 76 ]. This might be the reason, since in a large sample, the community participation rate did not drop after leaving school [ 57 ].
The same effect has been reported for unstructured social participation after leaving high school [ 75 ]. Others have reported how the company of a familiar person supports attending physical activities [ 71 ]. Additionally, a higher participation rate in leisure activities was found when the family climate was more sociable [ 22 ]. An important environmental condition for performing activities together is interests shared by family members [ 61 , 74 , 76 ], whereas situations where siblings have different interests have been described as hindering participation [ 61 ].
Overall, the relationship between adolescents with ASD and their siblings seems to be of a similar nature as those in typical sibling relationships, involving overall enjoyment, responsibility, and reciprocity [ 61 ]. Hence, siblings remind adolescents with ASD of being similar and different. This is described to play a role in their process of identity formation [ 61 ].
Some adolescents with ASD perceive the inequality with their siblings as alienation from their family [ 61 ]. The role of a sibling may involve providing a bridging function to the experiences that adolescents with ASD encounter in social roles outside the familial environment. Family members often channel opportunities for social participation [ 22 , 55 , 56 ] or initiate activities [ 22 , 60 , 62 , 80 ].
Participation is hindered when organizational, emotional, or financial limits restrict families in providing these opportunities [ 60 , 62 , 79 , 80 ]. A higher family income also helps to connect with others [ 57 , 65 , 73 , 76 , 78 , 79 , 56 ], as it provides opportunities and flexibility, and makes it easier to offer more options for participation, for example in physical activities [ 80 ], or to pay for a case manager [ 57 ]. Restricted financial resources might reduce the social participation of families as a whole and consequently that of the adolescents as well.
The higher the family income, the greater the frequency of invitations to activities [ 78 ].
The educational level of the mother also seems to influence participation [ 73 ], as educated mothers might know better how participation can be achieved against the odds. There is a tendency for advocating families to be associated with more positive outcomes [ 55 , 67 , 79 , 56 ]. When families fail to facilitate social connectedness or to advocate for adolescents with ASD, this seems to hinder participation [ 55 , 59 , 60 , 67 , 72 , 80 ]. For adolescents with ASD, friendships that overcome disability and barriers are the overall goal of participation [ 56 ]. If their eagerness fails to elicit responses by peers, participation is hindered [ 63 , 81 ].
Friendship is experienced in conjunction with shared interests, shared activities, joy, and enrichment [ 19 , 55 , 74 , 76 , 78 , 56 ]. Shared interests and shared activities support participation [ 18 , 62 , 74 , 82 ]. The use of social media also relates to connectedness [ 79 , 82 ]. It prepares for and at the same time reflects social relationships. Twenty-four percent of a sample played video games with peers [ 82 ]. From an environmental perspective, it is supporting when peers acknowledge that friendships with adolescents with ASD come about in a different way, and are therefore motivated to adapt [ 55 , 66 , 74 , 56 ].
This requires voluntary and reciprocal initiation [ 55 , 56 ]. Respect, often expressed by adolescents with ASD as a wish to be intellectually recognized [ 74 , 77 , 56 ], seems a good indicator of a supporting environment created by peers or classmates. Participation can be described as successful when friendship with adolescents with ASD is mutually enriching [ 18 , 55 , 74 , 56 ]. In these cases, peers and classmates give the adolescents with ASD an insider role and ask about their wishes or preferences. Being allowed to select a partner supports participation in physical education [ 71 ].
Developing and systematizing a different communication style supports connectedness [ 55 ]. It reveals the importance of humor and allows the adolescents to discover their talents [ 55 , 74 ]. This indicates that successful friendship is a support mechanism against bullying [ 62 , 67 , 83 ]. Overall, receiving a greater number of community services [ 73 , 79 ] or and being educated in a fully or partially inclusive school environment [ 22 ] is associated with greater participation in social and recreational activities.
But inclusion is not enough, since being equal to other students is important. Thus, authority figures in the school setting must use consistent principles of equity, or equivalence with other students [ 56 ].
Administrative flexibility and pedagogic skillfulness influence the way support staff create equity and structure environments to connect adolescents with ASD with their classmates [ 74 , 79 ]. Unprepared, uninformed, and insufficiently skillful support staff hinders [ 55 , 63 , 67 , 68 , 77 , 80 ]. It is not easy to achieve just the right level of support. On the other hand, excluding the adolescents, for example due to disruptive relationships with teachers, obviously hinders participation [ 77 ].
Overt staff attention can be perceived as negative, as it accentuates the differences [ 68 ]. Skilled support staff provide relatedness and immediate reassurance, and serve as role model [ 55 , 68 , 77 ].