Before Xiomara joined the 约翰霍普金斯医学院 autism support group, she says she was afraid to admit that her 5-year-old was on the autism spectrum.

希尔玛拉说:“在加入这个团体之前，我的生活有点孤独. “我不认识很多有自闭症孩子的母亲, and I felt like I was the only one who had a child with this condition.”

自闭症支持小组有大约30名拉丁裔成员. They meet once a month on Zoom and sometimes have guest speakers. 这个小组是父母们互相分享和支持的地方. 它都是用西班牙语运行的.

Children are typically diagnosed with autism spectrum disorder (ASD) between 2 and 5 years of age, 尽管这可能会有所不同. Diagnosis is made by a multidisciplinary team including a developmental pediatrician, 语言治疗师, 职业治疗师和其他专家. It involves observation and testing, as autism symptoms vary significantly and can change over time.

Everyday struggles for children with autism include difficulty communicating, 驾驭社交场合，理解他人的情绪, 以及对触摸的敏感度过高或过低, 光, 味道, 气味或声音. They can also experience learning delays in areas such as toilet training or reading, 形成对不寻常的玩具/兴趣的依恋(例如, one specific toy or a kitchen utensil) and have trouble with transitions, 比如度假时住在家里，或者开车/坐飞机旅行. Children may also have issues with falling asleep and staying asleep, develop repetitive movements or behaviors and have impulse control.

“情况各不相同，而且大多数都是行为性的. 尽管自闭症谱系障碍是一种医学诊断, working on the behaviors and doing the therapy doesn’t necessarily occur in the doctor’s office,” 塔尼亚·玛丽亚·卡瓦列罗，M.D., M.H.S., a pediatrician at the Children’s Medical Practice at Johns Hopkins Bayview Medical Center and a faculty member of Johns Hopkins Centro SOL.

Caballero says sharing community and school resources can be helpful for families who otherwise may not know where to start in accessing services, 尤其是非英语人士.

“这帮助我让儿子的病情恢复正常. I no longer see the situation as chaotic or shameful because there are other mothers in the group who have overcome more than me,希尔玛拉说. “生活更容易了。, and the group helped me to speak to people outside the group more comfortably about my child’s condition.”

Caballero started the group with now retired Johns Hopkins social worker Flor Giusti. They put together a What’s App group in 2019 after Caballero informally connected one mother with a newly diagnosed child to another mother with a child who had an autism diagnosis for several years.

“I realized that women needed peer support as they went through stages of understanding this new diagnosis from the lens of Latino culture and Spanish language,卡巴列罗说. “Like other kids with special needs who have non-English speaking parents, the work is doubly exhausting as they have to navigate resources, 治疗和学校会议都用英语.”

Caballero hopes the ASD group helps reduce the disparities in information and resources for Spanish-speaking families who have children with autism.

“Many families who speak languages other than English feel invisible in the medical system,卡巴列罗说. “Especially for a child with medical complexity who interacts frequently with the medical system, 照顾者仍然会感到有点失落和孤独. These parents and caregivers actually have such a huge amount of wisdom and want to share with each other.”

卡巴列罗说，这个小组讨论行为管理, navigating a school learning plan and advocating for their kids.

“We talk about simple things like who is a good dentist for kids with an autism diagnosis,卡巴列罗说. “Someone may share a good experience at the dentist or share struggles about their nonverbal child’s safety. 有时会有哭泣, 但大多数情况下，有很多人在倾听, 强化, 问题和建议.”

Caballero says she’s found that when people feel comfortable and realize that they are not alone, 他们感到被赋予了力量，重新充满了活力.

“他们正在获取信息和访问权限. 他们能够与他人交流, 这对孩子的健康是一个长期的好处,卡巴列罗说. “It’s not a treatment but a supportive safety net that elevates the family and community life for Latino families with children on the autism spectrum.”

给小组成员Nasly, 谁会有一个四岁的女儿患有自闭症, 起初，和不认识的人说话很奇怪. 但, 一段时间后, she grew more comfortable as she heard about other mothers’ experiences with their children.

“我了解到每个人都有不同的情况, 但最后, 我们几乎总是去同一个地方,纳斯利说. “With our little angels, you need help from parents and many other people. 不是每个人都理解有特殊需要的孩子, 但在这个群体中, 因为我们的经历，我们都能理解.”

Nasly says the group has helped her feel more relaxed and confident with her daughter.

“如果我对某件事有顾虑, I just send a message to the group chat and soon receive suggestions from other mothers,纳斯利说. “情绪良好是件好事, 因为我们的小天使总是需要我们的能量, 我们的帮助和支持.”

小组成员Adelina, 谁会有一个15岁的孩子患有自闭症, says she loves that she can share her experience with the rest of the mothers.

“当我们分享经验，让其他母亲可以借鉴时, 我们帮助减轻了沉重的负荷,阿德琳娜说。. 把我们分享的建议付诸实践, we can continue to find and participate in our child’s activities with love.”