为了任何父母而言，花点时间都是具有挑战性的，但是对于患有自闭症谱系障碍（ASD）的孩子的父母来说，这似乎是完全不可能的。我们许多人认为理所当然的小事 - 在仍然很热或在浴室里喝咖啡而没有干扰咖啡 - 通常无法避免有孩子的父母ASD。
ASD是一种发育障碍，可能引起重大的社会，沟通和行为挑战。自闭症社会, a national advocacy group based in Rockville, Maryland. “Each person with autism is unique, and because autism spectrum disorder is a spectrum, there are a range of added challenges and needs that vary per individual."
This variability is part of what makes caring for a child with autism consuming in a different way than caring for children with other disabilities, saysMelanie Pellecchia, PhD，精神病学心理学助理教授，以及宾夕法尼亚州心理健康中心的父母培训计划的负责人，费城宾夕法尼亚大学佩雷尔曼医学院的一部分是宾夕法尼亚州心理健康中心。
“我认为，家庭在孩子的学校生活，孩子的社交生活，孩子的医疗保健，孩子的治疗方面感到挑战 - 父母在杂耍和管理中有很多不同的作品。vwin app它可能会流血到他们生活的各个方面，而不会为日常事物留出很多时间。”佩莱西亚说。
压力和情感上的照顾者
Typical family outings like running errands or attending a school function can be worrying and full of uncertainty for parents with children with autism, notes Pellecchia. “A trip to the grocery store … can be really stressful because you don’t know if your child is going to have a meltdown,” she says.
她解释说，由于其他人常常不了解自闭症是什么是自闭症，因此许多父母经历了被判断的感觉。她说：“我有父母告诉我，‘每个人都看着我，因为他们不知道我的孩子有自闭症，他们只是认为我是个坏父母。’
Those feelings cause additional stress because the parent is not only trying to manage their child in those situations but also the perception of other people. It can be lonely and isolating. “That’s difficult for any parent to handle,” Pellecchia says, but adds that “literature shows the rates of stress of parents with children with autism are higher than for children with other disabilities. The exact reason for that is unclear, but I think that it’s definitely something that we’re seeing over and over again.”
发表在Clinical Practice and Epidemiology in Mental Health2018年7月发现，与患有唐氏综合症儿童的父母相比1型糖尿病, parents of children with autism reported a higher level of psychological distress and less social support.
“In our work with families, one of the most common issues that comes up is that parents often feel that no one in their neighborhood understands what they are going through, their own families don’t really understand what autism is, and that they lack a网络或社会支持system that they could turn to,” says Pellecchia.
自闭症子女父母更常见的财务压力
大多数患有自闭症的孩子都受到许多不同提供者的照顾音乐疗法or recreation therapy, says Pellecchia.
“All these appointments can also be difficult for parents to schedule and manage along with their own very busy work schedules and their other children’s needs,” she adds. “Those certainly can be very costly, and I think parents struggle with figuring out what they should pay for independently and what is covered by insurance or the child’s school programs,” she says. “I have many, many families discuss the financial strain of trying to navigate all the different kinds of treatment that their child might be receiving."
尤其是许多母亲扮演“案例经理”的角色，倡导自己的ASD的孩子。他们在家庭外工作的可能性较小，平均工作时间少，赚vwin app取少于儿童母亲的一半不到一半根据没有健康限制的收入自闭症说话是一个位于纽约市和新泽西州普林斯顿的非营利性倡导组织，全国各地有章节。据估计，损失的工资与特殊服务的费用相结合，在童年时期，每年总计约60,000美元。
自闭症护理人员的自我保健策略
护理人员练习至关重要自我护理罗斯说，为了能够找到缓解，减轻压力并改善身心健康。她说：“看护人经常戴多顶帽子，而喘息的人可以使人们恢复职责并尽其所能履行职责。”
Pelecchia说，尽管没有一种适合自闭症的孩子在育儿儿童时如何避免倦怠的方法，但仍有一些策略可以帮助解决家庭和看护人面临的许多问题。
倡导服务。“当我与家人交谈时，我告诉他们应该倡导 - 他们的孩子所接受的任何服务或治疗都应被其保险计划或孩子的教育安置所涵盖，” Pellecchia说。她说，请与您的保险公司联系，找出涵盖的内容，并确保您没有支付的费用超出您应有的费用。她补充说：“大多数基于证据的治疗方法都可以并且应该被保险覆盖。”
考虑加入支持小组。Pellecchia指出，父母支持小组可能会有所帮助，尽管实际上，父母很难将这些团体适应他们的生活。“大多数自闭症儿童的父母已经非常忙碌和过度安排。她说：“寻找时间和管理物流，有时涉及育儿或vwin app在整个城镇开车，可能会感到额外的压力。”她补充说，这是在试图与社交网络与其他注意事项联系在一起之间的平衡。
Pellecchia说，虚拟支持小组变得越来越普遍，这可能是家庭更好地获得支持网络的好方法。阿斯伯格/自闭症网络（AANE）为自闭症儿童和青少年的父母提供支持小组，聊天和在线论坛。
花时间自我保健。佩莱西亚说：“在我们的中心，我们有一个名为Mind the Gap，我们与家人一起工作以帮助他们了解自闭症和访问服务，并帮助父母从事自我保健活动。”鼓励父母每周提出小目标。
“Examples are things like, ‘I’m going to go for a 10-minute walk,’ or ‘I’m going to take a really long shower,’ or ‘I’m just going to go in my room and close the door because I need 5 minutes to myself,’” says Pellecchia. Those goals may sound really simple, but parents of children with autism often don’t do those things for themselves because they're so busy taking care of their families’ needs, she says.
The first step is coming up with a self-care goal, making sure it’s achievable, then writing it down and keeping it at the front of your mind, says Pellecchia. “I spoke with a mom who couldn’t remember the last time she had a manicure. She found 20 minutes to paint her nails, and it made a big difference in how she felt about herself,” says Pellecchia. “Simple things can go a long way in relieving stress,” she adds.
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If You’re Parenting a Child With Autism, Remember You’re Not Alone
佩莱西亚说：“我听到许多父母感到孤立 - 他们觉得自己没有任何了解自己正在经历的事情的人。”她说，这可以帮助人们意识到，尽管每种情况都不同，但许多家庭正在经历非常相似的事情。
“社区感可以强大而有益；她说，发现社区的家庭即使在线也可以走很长一段路。”她说。这不仅可以从情感的角度来看，而且还可以帮助管理与养育具有特殊需要和自闭症的儿童有关的日常结构。vwin app
