阿斯伯格患者需要什么

自闭症新闻

What does a studentwith Asperger Syndromeneed in a schoolprogram?

患阿斯伯格综合症的学生需要什么？

来源：http://ahany.org/Whatdoesastudent.pdf

Lynda Geller,Ph.D.

Lynda Geller博士



Anyone who knows many children andadults with Asperger Syndrome knows that every person’smanifestation of the condition is very different. While they sharesignificant social disability, some are very successfulacademically, some struggle with accomplishing work; some haveintense intellectual interests that lead them to career paths, andothers have intense interests that seem to have no practical use;some have a few friendships, others are desperately alone andlonely. Because Asperger Syndrome is an outcome of braindifferences in combination with life experiences, no twoindividuals are exactly alike. Therefore, each student we encounterhas different educational needs.

认识多个阿斯伯格综合症患者的人都知道，每个人的症状表现都不尽相同。虽然他们都有严重的社交障碍，有些人学业成绩很优秀，有些人则很吃力；有些人有着强烈的智力兴趣，从而引领他们选择职业道路，有些虽然拥有一些强烈的兴趣爱好，这些爱好却并没有派上实际用途；有些人有几个朋友，有些则与绝望的孤独和寂寞为伴。因为阿斯伯格综合症是大脑异常和生活经历的混合结果，没有哪两个患者是一样的。因此，我们遇到的每个学生都有着不同的教育需求。



Least restrictive placement is aneducational term that means that we want to provide students withthe proper level of support for success without placing them inunnecessarily restrictive environments. For students with AspergerSyndrome, we want to provide the level of support that is necessaryto help them optimize their skills and strengths without removingthem from typical school experiences, if possible. Some studentsneed a protective environment and some learning supports, whileothers need a little support developing their social skills in areal life setting. Matching the individual need to the level ofsupport is critical to helping a child gain self-esteem andindependence.

最少限制的位置是一个教育术语，它意味着我们要为学生提供合适的帮助，同时避免把他们放在一个充斥着不必要的限制的环境下。对于患有阿斯伯格综合症的学生们，提供合适的帮助来优化他们的技能和强项是必要的，但如果可能的话，尽量不要把他们从典型的校园经历中排除出去。有些学生需要保护性的环境，有些学生需要学习上面的帮助，而有些则需要一些发展生活中所需的社交技能的帮助。将每个个体的需要与提供支持的水平相匹配十分关键，因为这对帮助学生们获得自尊和独立性至关重要。



What every family with a member withAsperger Syndrome needs to consider is how are the followingpotential difficulties being addressed.

有一名阿斯伯格综合症患者的家庭需要考虑如何处理以下潜在的困难。



1.      The development of basic social skillsand social relationship abilities. School programs and communityclinicians often provide social skills training. The quality andtype of this training is critical to progress. Many activitiescalled social skills are not based in solid research. Just becausesomeone provides a child with opportunities for social interactiondoes not make the activity a useful social skills developmentexperience. Specific skills at the child’s level of need coupledwith opportunities for generalization outside of the formaltraining situation are necessary components for skill developmentto occur. Children with Asperger Syndrome typically have had greatdifficulty acquiring these skills that typical children simply pickup from their environment. We know that those with AS need specifichelp to perceive, acquire, and generalize basic social skills.Parents should always ask social skills trainers if they areutilizing proven, evidence-based techniques.If parents are notinvolved in the program, a vital link for generalizability is lostand families should be somewhat suspect of the program. Sometimessocial skills programs are too simplistic, teaching only the basicinstrumental skills such as eye contact and greeting. Helpingindividuals understand social norms and develop more sophisticatedsocial cognition skills are critical for relationship development,which is really what we all want for them. So, although a parentmay be overjoyed that there is any social skills opportunity, it isstill necessary to be a critical consumer and request a detailedstatement of philosophy and curriculum, whether it is a school or aprivate practitioner in the community. Secondly, even if basicsocial skills have been acquired, children with AS may continue toexperience difficulty developing authentic relationships. Theirinterests may be atypical or age inappropriate or they may have alltheir social overtures rejected by others. Here supportive adultscan have an important impact. Teachers and related serviceproviders can facilitate interactions in the real life situationsthat school provides, particularly on the playground, at lunch, andin other unstructured situations. Parents can help by assistingtheir children find others with shared interests. Parents often askwhat to do when their children are unable to make friends. Findinganother who loves Warhammer, entomology, or fantasy goes a long waytoward starting a relationship. Parents and teachers can becreative in finding appropriate peers with similar intereststhrough clubs, internet sites, or other personal resources. Puttingrandom children together who share only the diagnosis of AS (andconsequently poorly developed social skills) is far less effectivethan finding two children who are both fascinated by the sameactivity and can talk endlessly about it together. Even when anappropriate peer has been found, and the children seem to be a goodmatch, adults should bear in mind that their facilitation of socialinteraction can help immensely, especially in the early stages ofacquaintanceship.

1.    基本社会技能和社交能力的发展。学校项目和社区医生通常会提供社会技能的训练。这种训练的质量和类型是孩子进步中很关键的因素。许多号称社会技能的活动并不是基于可靠的研究结果。只是因为有人给孩子提供一个社交互动的机会，并不意味着这是一个有用的社会技能发展的体验。与孩子需求水平相匹配的具体技能和训练场景外的广泛运用，这两者结合起来时技能发展的必要部分。患者阿斯伯格综合症的孩子通常很难学会这些其他孩子自然学会的技能。我们知道阿斯伯格综合症患者需要具体的帮助来理解、学习并广泛运用这些基本社会技能。父母始终应该询问社会技能训练师们，了解他们是否利用经过验证的、以证据为基础的方法在训练孩子。如果父母没有参与到项目中，就丢失了一个广泛运用技能的重要环节，而且家人也应该始终对此类项目持质疑态度。有些社会技能项目太过简单，仅仅教授一些基础的工具性技能，比如目光接触和打招呼。帮助个体了解社交规范并开发更复杂的社会认知技能，是社交关系发展的关键，也是我们真正想让他们获得的东西。虽然一有社交机会，父母都会喜出望外，但父母仍然要做有批判精神的消费者，所以无论是在学校还是社区的执业私人医生，父母都要了解细致的经营理念和详尽的课程说明。其次，即使孩子学会了基本的社交技能，患有阿斯伯格综合症的孩子发展真实的关系也许还是有困难。他们的兴趣也许很奇特，也许与他们的年龄不符，或他人拒绝了他们想开始社交的所有举动。老师们和相关服务提供者可以促进学校提供的现实生活场景下的互动，特别是在操场上、午饭时或者其他宽松的环境下。父母们可以帮助孩子们找到兴趣相投的伙伴。许多父母问孩子交不到朋友时该怎么办。他们可以找到一个同样喜欢战锤游戏、昆虫学或者奇幻的人，这对发展一段关系很有帮助。父母和老师可以通过俱乐部、网站或者其他私人渠道，创造性地为孩子寻找合适的兴趣伙伴。随意地安排同样患有阿斯伯格综合症，社交技能发展有缺陷的孩子们聚在一起，远不如找到两个有共同兴趣，喜欢同一项活动，并能一直聊下去的孩子要有效。即使找到了一个合适的伙伴，孩子们看上去也玩得来，家长们必须在心里铭记，他们能为社交互动提供很大帮助，尤其是在孩子们相识初期。

2.Organization and academic support within the context of goodacademic skills Problems with disorganization are very common forstudents with Asperger Syndrome and frequently have a very negativeimpact on achievement. If a child has these problems, asking him tojust be more organized or providing negative consequences areineffective and painful interventions. A neuropsychologicalevaluation can help us understand exactly what underlying skilldeficits are causing these students to lose their initial academicadvantage. A student who is processing information more slowly thanothers, or who can’t set priorities, or who doesn’t understand thepassage of time, or who overfocuses on details and never finisheswork (and these are all fairly typical of individuals with AS) willfind less and less success with academics over time and lose thatimportant source of self-esteem. If the underlying problems areidentified and specified on an IEP, finding a way to support thestudent’s organizational difficulties becomes an educationalimperative, rather than a source of personal criticism. For anunclassified student, the specific recommendations aneuropsychological evaluation can provide may still lead to morespecified help and a less likely tendency to blame rather thansupport. Be ready to suggest a consultant who can educate teachersand other school staff in fundamental brain differences and howthey manifest in this population. Many educators just do not knowthis important information.



2. 良好的学习技能所需的组织能力和学术支持。组织方面的问题对患有阿斯伯格症的学生来说比较常见，并经常对学业产生非常不利的影响。如果孩子有这些问题，要求他更有组织或施加不良后果，这些都是无效且让他感到痛苦的干预手段。神经心理学评估可以使我们了解什么技能缺陷使这些学生输在起跑线上。处理信息慢、不能分清事情的轻重缓急或过分注重细节而无法完成的任务，（这些都是阿斯伯格患者十分典型的表现），这些因素让学生获得的成功越来越少，最终失去自尊。如果发现并在个别教育计划中指出相关问题，那么寻找一种方法来改善这种组织困难就不是批评的来源，而变得势在必行。对于一个未分类的学生，神经心理评估所提供的具体建议可能带来更多的帮助和更少的责备。适时咨询医学顾问，他们能告知老师及其他学校员工一些关于大脑结构的基本差异，以及这些差异在艾斯伯格患者人群的症状和表现。



highlyexperienced in the emotional development of children andadolescents with AS, may be invaluable in helping a school developa protocol to manage and support this kind of student. This mayhelp a child maintain school placement and contribute to thedevelopment of more socially appropriate emotionalregulation.



3. 不成熟或不适当的情感表达。有限制的友谊通常会导致情感的成熟缓慢，或因日常的社交痛苦而发展异常。情绪调节是一种发育技能，它产生于的基本的脑部机制和与他人的日常将往经历的相互作用。阿斯伯格综合症患儿负责情感发展的神经回路与正常儿童的有差异。这些差异会影响他们的经历。此外，由于自我隔离、有限的亲密关系或同伴排斥使他们学习社会情绪的机会更少。这些困难在学校里表现为不成熟的社交规范，使他们不能调节对失望的反应，或以愤怒回应任何与期待不相符的事情。不成熟的行为使他们与他人的距离变得更远，还可能会影响入学。学校工作人员往往没有受过训练来帮助这些孩子。由于复杂的与大脑相关的问题，一个简单的行为计划往往会使一个情绪失控的孩子的情况更加糟糕，而不是有所帮助。一位对阿斯伯格综合症患儿的情绪发展经验丰富的顾问，对帮助学校制定相关规定以管理和帮助这样的学生是非常宝贵的。这可能有助于保证孩子正常入学，并促进其发展更适当的社会情绪调节。


4.Isolation and/or depression. Often children with Asperger Syndromeretreat to the internet or a fantasy world to avoid social anguish.Families are often at a loss as to how to change these behaviors.Sometimes schools are punitive when students cannot attend, blamingthe student for being manipulative or the parents for not exertingdiscipline. Students with AS who are showing excessive isolationshould be evaluated for an anxiety or mood disorder. These aretreatable problems that require close cooperation between theschool and the family. Schools need to help families findappropriate professionals, cooperate in treatment protocols, andinvestigate sources of fear and anxiety such as bullying oroverwhelming situations. Families need to take potential anxietyand depression seriously and seek appropriate treatment.

4. 孤立或抑郁。阿斯伯格综合症患儿通常诉诸于互联网或幻想的世界以避免社交痛苦。家长们常常不知该如何帮他们改变这些行为为感。当学生不参加社交活动时，学校有时会觉得学生好指使人，从而惩罚他们，或责怪其父母没有加以管教。患有阿斯伯格综合症并常常独自一人的学生应该接受交流或心境恶劣障碍评估。这些都是可以治疗的问题，但需要学校和家庭之间的紧密合作。学校要帮助家长找到合适的专家，配合治疗方案，并寻找恐惧和焦虑的来源，如欺凌或令人紧张的情景。家长需要认真对待潜在的焦虑和抑郁，并寻求适当的治疗。

5. Widevariation in development.

5.发展中有很多差别。


Studentswith AS characteristically exhibit wide disparities in basicabilities. Typical difficulties directly attributable to brainfunction include poor coordination, handwriting difficulties, slowprocessing, inattention, and extremes in academic ability. It ismore difficult to be a person with widely varying abilities becauseexpectancies are often unrealistic.

患艾斯伯格综合症的学生在基本技能发展上差距很大。典型的与大脑功能直接相关的困难包括不协调、书写困难、反应迟钝、不能专心和学术能力中的极端表现。他们经历着许多困难，因为悬殊很大的能力让人们对他们报以了不切实际的期望。

Just becausea student can solve any arithmetic problem mentally does not meanthat keeping order in long division is accomplishable. Just becausea student can speak eruditely about history does not mean thatwriting mature compositions about history is possible. So it iscritical to understand strengths and weaknesses so that weaknessescan be identified and supported and just as importantly, intellectcan be challenged.



一个学生也许可以心算解决任何算术问题，但这并不代表他能轻而易举得长期保持整齐有序。一个学生也许可以很博学地谈论历史，但这不代表也能写出深思熟虑的历史文章。所以，了解学生强项和弱项非常重要，这样技能识别和支持弱点，也能提供智力上的挑战。

Sometimeslanguage or motor function can sabotage other skill areas.Consequently, even for older students, regular Speech and Language,Occupational Therapy, and Physical Therapy evaluations are criticalto addressing unevenness of academic performance and helping usdevelop important interventions to support ongoing academicprogress.

有时候语言或运动机能会破坏其他方面的技能。因此，即使对年纪大一点的学生，语言训练、职能治疗、物理治疗评估仍非常关键，因为这些对解决学习能力发展不平衡，帮助我们发展重要的干预措施以促进学习能力的发展，都有举足轻重的作用。



Every familyneeds to make an honest appraisal of what specific problems theirchild has. A frank conversation with the student’s school as towhether addressing these needs is possible within that setting iscritical. Avoiding these issues does not make them go away as thesechildren show us every day that they cannot develop such skills ontheir own.



每个家庭都需要针对孩子的具体问题作出诚实的评估。和孩子的学校进行一次坦率的对话——讨论在这个环境里能否能解决这些需求非常关键。逃避并不会让这些问题消失，孩子的行为每天都告诉我们一个道理，那就是他们仅凭自己的努力是发展不出这样的技能的。

Possibleschool solutions include

1. engaginga consultant to help a child’s school address specificproblems

2. having atrained paraprofessional work with the student

3. placementin a setting that has ancillary support available whenneeded

4. finding aspecial education school capable of providing the level ofacademicsupport andchallenge needed

5. changingto a specialized setting for students with Asperger Syndromethataddressesall the above and provides a peer group and self-advocacymodel

学校可采取的解决方法包括：

1. 请咨询师来帮助孩子的学校解决具体问题

2. 请经过训练的辅助专业人士帮助孩子

3. 把孩子放在有相关辅助支持设备的环境中

4. 寻找有能力提供学习支持并解决问题的特殊教育学校

5.去一个专门为艾斯伯格综合症学生设立的地方，那里能解决上述所有问题，并提供与相似的同龄人相处，自我帮助的模范非常熟悉各种情况及其表现形式的专业人士，可以帮助家庭对孩子的需求及如何提供帮助作出更为专业的评估。每个发展阶段都会给所有孩子带来新的挑战。我们需要认识孩子的需求、强项和学习情况间的对应关系。

A schoolthat provided a wonderful environment in third grade may not beable to address the new challenges that middle school brings.Therefore, reappraisal of educational situations and the student’smaturity and appropriateness for them is a critical part ofacademic and personal success from preschool through college.Objective observations can be especially helpful in gaining anunbiased assessment of the success of the match of a school settingand the student’s current needs.

能提供很棒的三年级学习环境的学校，可能并不能应对初中学习所带来的挑战。因此，对教育情况、学生的成熟度和适宜性的重新评估，在从幼儿园到大学期间，都是学术和个人成功的重要部分。客观的观察有助于公正地评估学校环境与学生需要的匹配程度。



LyndaGeller, Ph.D., served on the faculties of Georgetown University,Stony Brook University and NYU Medical Schools for 25 years, whereshe worked on the development of clinical centers providing a widearray of services for children and adults with autism spectrumconditions. Dr. Geller has a clinical practice in New York Citydedicated to providing social, psychological, consulting andcoaching services for children and adults with Asperger Syndromeand related conditions.

Lynda Geller博士在乔治城大学、石溪大学和纽约大学医学院教书已有25年，期间她主要研究如何给患有艾斯伯格综合症的孩子和成人更多样的临床服务环境。Geller博士在纽约做过一系列临床实践，致力于给患艾斯伯格综合症的孩子和成人及其他相关情况提供社交、心理、咨询和训练服务。



She iscurrently the Director of the Institute for Cognitive Diversity atBank Street College, which provides specialized evaluations andexecutive functioning support for students with Asperger syndromeand other neurodevelopmental issues. Dr. Geller is also on theAdvisory Board for the Asperger Syndrome and High FunctioningAutism Association.



她现在是美国银行街学院教育认知差异协会的负责人，这个协会为艾斯伯格症患者或其他神经发育失调患者提供了专门的评估和功能支持。Geller博士也是艾斯伯格症和高功能自闭症症协会顾问委员会的一员。

对本文的特别申明: 由于我们的医学专业知识和翻译水平有限，译文可能会有瑕疵，欢迎大家提出宝贵的意见和建议，以便帮助豆苗计划翻译小组更好地开展工作。

翻译：Skye           

         婉鸢      

        Greta         

复核：ゼ~SUNNY~ザ   

F.R*            

        刘玘-67      

转自：新浪微博 @ 豆苗计划志愿者联盟关爱自闭症

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