In this episode of Autistic FM, host Haje Kamps interviews Bella, an autistic woman from San Francisco, who shares her life experiences from being diagnosed with autism at the age of four to managing life and healthcare as an adult.
Bella opens up about a difficult childhood, marked by an unsupportive family environment and instability. Despite these early challenges, she found a meaningful friendship that blossomed into an essential support system, particularly as she navigates adulthood and life as an autistic person. This friend has played a pivotal role, becoming her caregiver and helping her with emotional stability and daily management, underscoring the importance of trust and reliable support in the face of ongoing trauma.
Bella recounts the challenges of accessing proper medical care due to systemic issues within healthcare institutions. She highlights bureaucratic missteps, like losing her autism diagnosis records, which forced her to undergo repeated diagnoses. Bella describes feeling infantilized and dismissed by healthcare providers, who often fail to treat her as an adult and overlook her specific needs as an autistic person, such as avoiding phone communication. These challenges are not isolated but reflect broader flaws in the healthcare system that complicate care for neurodivergent individuals.
Bella has learned over time to advocate for her rights within the medical system, including the right to refuse certain treatments or medications. Her experiences underscore a growing awareness of her boundaries, a skill she encourages others to develop. However, she also faces ongoing struggles with asserting her “no” in a system that often disregards patient autonomy, highlighting a need for healthcare providers to better respect and understand autistic individuals’ communication preferences and autonomy.
Bella shares her experiences with ABA (Applied Behavior Analysis) therapy, which, in her case, involved forced “masking” to appear neurotypical. She describes the process as abusive and dehumanizing, echoing the broader autistic community’s criticism of ABA as a therapy that prioritizes compliance over well-being. This discussion underscores a need for autism-affirming care practices that respect autistic individuals’ natural behaviors rather than attempting to “normalize” them.
The theme of trust and unconditional care is woven throughout Bella’s narrative, particularly in her relationship with her caregiver, who has become a lifeline through various crises. Her caregiver’s consistent support, understanding of her needs, and advocacy in medical contexts exemplify how positive, trust-based relationships can empower autistic individuals to navigate complex challenges. This theme reinforces the importance of interpersonal relationships in autistic people’s lives, particularly when facing a medical system that frequently fails to meet their needs.
Bella is speaking with Autistic FM under a pseudonym.
Trigger warnings: This episode includes themes of child neglect, the abusive nature of 1990s ABA therapy, and a brief description of physical violence.
00:00 Introduction
00:19 Interview
01:06 A traumatic childhood
03:41 Navigating the medical system
06:22 Getting diagnosed - 3 times
06:45 Aside: DSM-V and the'levels' of autism
08:38 Losing more records
14:14 Aside: What's an AAC device?
17:04 Anxiety and the medical system
17:54 COVID-19 and autism
19:57 Involuntary holds (5150 and 5250)
22:51 Good healthcare experiences
25:45 Self advocacy
36:17 ABA Therapy
42:01 Diagnosing Autism today
44:49 Closing notes
47:38 Closing credits
