Tag: autism

The ones we sent away

The author found out at age 12 that her mother had a sister who was institutionalized before age 2 with intellectual disabilities that left her unable to speak. She traces her aunt’s life through various institutions, most of them deplorable, and hears her mother’s grief over the separation from her only sibling. She contrasts the attitudes and treatment of such disabilities in the 1950’s through the 1980’s with much more open acceptance and inclusion of nonverbal persons in the 2020’s, based on a photo that went viral on Twitter. Detailed memoir of three generations’ relationships with the sister: the author’s grandmother, her mother, and herself. Traces the evolution of attitudes toward intellectual disabilities in the 20th and 21st centuries from close relationship to the issue, noting that children born today with her aunt’s condition are able to live much fuller lives because of greater inclusion in educational, social and family contexts. Includes many links to relevant sources, from memoir to scientific works. About 15 pages; also has audio version.

Learning Our Son’s Language

Pediatrician Vidya Bhavani Viswanathan describes learning to communicate with her autistic son by changing her own expectations about what constitutes “communication” and how we can connect with one another without words. Her essay details the course of her son’s loss of language at age 3, and her own struggle to come to terms with this. She writes, “I am a writer, and for me his loss of verbal language was so crushing because words were my primary currency of existing. The way I understood the world was through words, and the way I explained it was through words.” Gradually, however, she learns “how to achieve connection without words” and she gives an eloquent list of examples: “Shared enjoyment of something he was interested in; cuddles and tickles that lead to a fit of giggles; city walks with moments of pause to quietly smile his dazzling smile at the crunchy leaves on the ground, the touch of a rough brick wall, the screech of tires, and the wail of an ambulance.” The story also includes information about treatments, screenings, therapies, and assistive technology, yet the emphasis is not on “fixing” her son, but on ruling out possible medical causes for his loss of language and then learning to appreciate how he communicates and how she can enter and appreciate his world.

The essay could prompt a discussion about autism acceptance, and the importance of presuming that autistic children can connect and communicate when provided with accommodations and supports. It also encourages an appreciation of autistic perspectives and challenges deficit-based stereotypes.

Autism and Neurodiversity: Different Does Not Mean Broken.

In this TedTalk, Adriana White (librarian, former special education teacher, and author) discusses the idea of neurodiversity. She was diagnosed with autism and anxiety in her 30’s and now advocates for inclusive schools and libraries. Her talk includes stories of her own autistic experiences, including how others labeled and made fun of because of the way her brain works. This video could be utilized as a tool to investigate how medical diagnoses elicit certain stereotypes and biases, such as being denoted as a “weird” kid. Additionally it could be used as a way to create dialogue surrounding the cultural and societal norms that surround the ideas of being “normal” as well as raising questions about accommodations in the built environment and the social model of disability.

Neurodivergent Narratives

Sandra Coral is a student, teacher, writer, podcaster, and learner all about neurodivergence. They have multiple social media sites (instagram, twitter, Facebook) that are publically accessible and focus on promoting education and awareness about neurodivergence. She is autistic and has ADHD and shares her own experiences via through written posts, videos, and podcasts on topics such as sensory processing, fitting in, masking, and burnout. Sandras’s sites could be utilized in a classroom setting as narratives from someone who is neurodivergent told in their own voice. The link below is to the Facebook page, where the About profile provides links to other platforms. Her social media posts are useful not only for discussing neurodivergent narratives, but also for reflecting on what constitutes a narrative (small individual posts retelling everyday life? the accumulation of posts over time?). In contrast, her Substack includes longer posts that more clearly resemble stories.

Losing Each Other when Caregiving as a Family

This caregiving story explores the challenges faced by the narrator, Dan Harding, when his mother was diagnosed with multiple myeloma, a bone marrow cancer. As the youngest sibling, Dan took on the role of primary caregiver for his two-year-old brother, Ramón, who had non-verbal autism. The narrative explores the complexities of caregiving, his strained relationship with his brother Ramón, and the family dynamics during a time of grief and healing. He describes the initial difficulties in understanding and meeting Ramón’s needs, the rejection faced as the primary caregiver, and the perseverance required to maintain their bond. The story highlights the turning point when he realized the importance of immersing himself in Ramón’s world rather than forcing him into his own. The narrative also delves into the family dynamics, including the denial of Ramón’s father about his son’s condition, leading to conflicts within the family. Different coping styles among family members, clashes, and misunderstandings are discussed, along with the impact of the mother’s health condition on the family dynamics.

The story emphasizes the lack of understanding about mental health within entire families and the prioritization of physical tasks over emotional well-being. It concludes with the acknowledgment that caregiving is a complex journey with both challenging and loving moments and not all aspects can be neatly resolved or glossed over. Dan expresses a realistic perspective on the difficulties of caregiving and emotional healing within a family context.

This story could be used in multiple different settings, like for other caregivers, or in a classroom setting for students or healthcare providers hoping to better understand the experience of caregivers. It provides insight on how an entire family could be supported in the presence of multiple diagnoses, encouraging healthcare providers to help their patient’s families find mental health support as they complete their caregiving duties.

To understand autism, don’t look away

Carina Morillo shares her story as the mother of a son with autism through a TedTalk. The video is in Spanish with English subtitles; a transcript in English and Spanish is available as well. Morillo’s 15 year old son, Ivan, was diagnosed when he was two and a half and at that time, his parents did not have access to internet information or expert advice about autism. Morillo describes how she learned to connect with her son through activities he enjoyed and how she learned to appreciate and build upon his strengths, such as a strong visual memory, which became a basis for his communication through images. She describes support from a local grocer who gave her son a job that utilizes his passion for organizing items. Her message is that one does not need to be an expert to be curious and inclusive.

Eye contact is a part of the story and a metaphor for inclusion; some autistics might point out that insisting on eye contact can be distracting, even painful. However, the larger point of the story emphasizes valuing autistic abilities and working with their interests to create connection. This story can prompt a discussion that may challenge stereotypes about autism and expert systems of medicalization and treatment.

2020 was One of the Best Years of My Life

Inêz Mália Sarmento is disabled autistic author who describes how her experience during the pandemic included growth and development. “It helped me understand even more that the world was ready, it just wasn’t using its resources the right way, meaning, the world could be accessible for everyone if we wanted it to be. That made me feel a bit resentful. But it also gave me the fuel I needed to keep pushing against the grain.” As a result of this access, she finished high school, began college, and made friends. She questions “going back to normal” and reducing these services.