Perspective: Adult sibling with profound ASD

Mojdeh Mostafavi, MD, shares her deeply personal journey as a sibling supporting a loved one with profound autism. She describes her experiences from early childhood through adulthood, highlighting the challenges and triumphs that her family and care team have experienced. The speaker shares ten meaningful insights about her family’s journey, highlighting the importance of communication and advocacy from a very young age. Mostafavi emphasizes the complexities of ever-evolving sibling relationships before the Q&A. 

In this webinar

2:00 – Introduction
4:30 – Early life, diagnosis, and family response
9:00 – The role of siblings and at home care
14:05 – Behavioral challenges during adolescence
17:00 – Adulthood milestones and medical crises
21:30 – Ongoing care and the unknown future
23:00 – Welcome to Holland – a sibling’s perspective
27:00 – Ten reflections from an adult sibling of someone with profound autism
34:00 – Communication challenges and triumphs
43:00 – Family, community, care teams — the importance of support
47:40 – Q&A

Early Life, Diagnosis, and Family Response

Mostafavi’s brother was born in 1995, when she was just two years old. During pregnancy and early infancy, his development seemed uncomplicated. However, at around 18 months, their parents, both medical professionals, noticed a profound developmental regression. He began losing words as he learned new ones, stopped responding to his name, started to avoid eye contact, and exhibited classic stimming behaviors like lining up toys, hand flapping, and finger twisting. The speaker explains that this regression occurred within a five-or six-week period, during which his preschool teacher suggested they get an autism assessment (4:30).  

In 1996, her brother was diagnosed with autism; this was a traumatic experience for her parents, who received a largely negative prognosis. Her parents recall being told that he would likely never speak or live independently and that many strongly suggested institutionalization. Mostafavi reminds viewers that during the mid-1990s, autism prevalence was reported as 1 in 10,000, so there was very little understanding or resources available (7:00). Undeterred, her parents embarked on a journey of self-education, extensively researching interventions and support strategies. They successfully pioneered a home-based program to address their son’s profound needs in an area with few specialized services.

The Sibling’s Role: Integration and Transformation

Growing up, Mostafavi’s life was intrinsically linked to her brother’s care. Their home was a hub for various therapies, including occupational therapy (OT), speech-language pathology (SLP), and ABA. From a young age, she was actively involved in these sessions, often tasked with modeling behaviors or assisting therapists. The speaker emphasizes how this deep involvement made her feel valued and important, which mitigated feelings of being a “glass child” and fostered an understanding and supportive sibling relationship (9:00). It was in her elementary years, around ages six to eight, that she first recognized the unique differences in her family life compared to her peers (12:00). 

Adolescence and Behavioral Challenges

Adolescence proved to be an exceptionally challenging period for her brother, particularly due to his limited verbal communication skills and subsequent difficulty expressing his needs and emotions. These challenges often led to intense behavioral outbursts, primarily aggression, including hair pulling, scratching, and biting, usually received by herself or her mother (14:05). Mostafavi underscores that her brother showed remorse after such outbursts, highlighting not only their close bond, but also the lasting distress externalized behaviors can have on everyone involved. The hormonal shifts of puberty further complicated her brother’s ability to self-regulate. The presenter recalls the incredible support they received from her brother’s care team and how they assisted in navigating this challenging moment for their family (15:00). Mostafavi notes her brother’s naturally loving disposition, stating that, even in these hard moments, 95% of the time, it was just awesome. It was that 5% where he struggled with communication that would result in aggressive behaviors.

Adulthood and medical crises

Mostafavi highlights that her experience differs from many because all the support systems they had took place in their home. During early adulthood, her brother reached many key milestones, like going to the movie theater, getting his first hair cut at the barber, and getting his wisdom teeth removed (17:00). The speaker briefly describes the first severe medical crisis her brother had when he was 27, which led to hospitalization and an induced coma. The cause was eventually traced to severe, unexpressed pain, leading to extensive medical evaluation and ultimately a diagnosis and intervention. The presenter comments on how disruptive it was to the entire family to be unable to manage and care for her brother at home. This process forced the family to reassess their resources, their son’s evolving needs, and the family’s well-being. It was a transformative period that instilled a deeper sense of awareness and appreciation for the ongoing challenges of supporting a loved one with profound autism (20:00).

Her brother remains at home with their parents, benefiting from a consistent care team, some of whom have been involved for over a decade. While aggression has subsided, he still experiences self-injurious behaviors, mainly head-hitting, often linked to unexpressed pain. The family is actively working with his medical team to mitigate these symptoms and behaviors. Despite these ongoing challenges, a home-based program with his long-standing care team remains the most effective option for his needs (21:30).

Reflections on the complexities of being a sibling

To articulate the sibling experience, the speaker references Emily Pearl Kingsley’s poem, Welcome to Holland, originally about the parental journey of having a child with special needs. Mostafavi adapts this analogy to the sibling perspective, explaining that a child growing up in “Holland” (a life with a sibling with autism) doesn’t initially understand the concept of “Italy” (a typical life). As they grow, they begin to recognize differences and form their understanding of the world, realizing that “Holland” is the only life they’ve ever known. This perspective highlights that the complexity and evolution of their unique life journey only become fully appreciated in adulthood (23:00). 

The speaker provides ten insights/reflections on her experiences as a sibling of someone with profound autism. She emphasizes the multifaceted and ever-evolving nature of the sibling relationship, explaining that their dynamic constantly shifts as both individuals navigate life stages—childhood, adolescence, and adulthood. For Mostafavi, this role often includes aspects of caregiving and, in the future, the role of guardian (27:00). She clarifies that her experience doesn’t align with the “glass child” concept because of her deep integration into her brother’s care, which made her feel valued. However, she acknowledges the profound and complex emotional and psychological impact, including feelings such as hurt, anger, guilt, frustration, love, sadness, and grief. All of these require continuous coping strategies even today (30:00). 

A significant aspect of the speaker’s experience is the unique “language” or means of communication she shares with her brother and sister. Living with someone with substantial verbal communication challenges has honed her ability to understand and interpret non-verbal cues (34:00). She touches on the importance of advocacy and empowerment from a young age and the complexities of planning for the future (40:00). Mostafavi asserts the importance of finding “your people” and navigating social life and relationships. The power found in people who support, nourish, and understand the nuances of your life cannot be understated (43:00). The speaker ends by reminding viewers that these are her experiences and that this may look different for everyone. During the Q&A, she discusses therapy for siblings and much more (47:40). 

Originally published on January 6th, 2025