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

Laurie A. Vismara, Ph.D., BCBA-D, R.B.A. (Ont.) details caregiver strategies for building infant social interaction. She introduces the Infant Start Manual, an extension of the Early Start Denver Model. The speaker outlines contemporary research on early-in-life autism support strategies and underscores the need for collaborative, family-centered support tactics for parents and caregivers. Vismara details six (6) infant learning characteristics, how they present, and what caregivers can do to foster these social communication skills during infancy.

Handouts are online HERE (.zip)

In this webinar: 

1:30 – Introduction
6:10 – Infant Start Manual
11:40 – Research findings
17:55 – Infant learning characteristics
20:25 – Attentional flexibility
27:10 – Object use
33:00 – Prelinguistic development
36:55 – Combined, pragmatic communication
42:25 – Speech
47:30 – Social attention and engagement
54:20 – Tips for baby learning
58:00 – Resources

Introduction

Vismara introduces the Infant Start Manual, an extension of the Early Start Denver Model that focuses on infant social interactions (1:30). She highlights the need for innovative, flexible approaches to support strategies that match the needs, goals, and priorities of parents and caregivers. The speaker outlines specific language used in the talk and notes presentation learning objectives (4:20). The vision of the Infant Start Manual is to facilitate families in their caregiving journey with interactive early-in-life topics aimed at infant social communication vulnerabilities (6:10). The manual provides supports through family-centered coaching and does not substitute for a diagnosis, fix, or cure. The Infant Start Model can be accessed freely at esdmonline.com/about in the Encouraging Infant Communication and Play Manual (Rogers & Vismara). Free access is for personal use only and should not be posted online. 

What the research says

Research on the efficacy of early-in-life autism supports is still emerging. Studies show mixed results across high (10-15 hrs/week) and low-intensity (0.5 – 3 hrs/week) supports delivered by parents and clinicians. All studies aim to teach caregiving skills for social and joint engagement through play and other activities. Results show improvements in caregiving domains, infant proximal behaviors, and interactive styles for caregivers. In contrast, infant autism domains show minimal changes (13:00). One pilot study of the Infant Start has been published. Overall, caregivers shared positive perspectives on content and delivery techniques, and infant vulnerability around social characteristics diminished over time compared to families that did not participate (11:40). 

Vismara posits that the cumulative benefits of small initial changes in interaction become more apparent over time, meaning the full impact of these interventions cannot yet be measured. However, these studies provide an opportunity to understand the acceptability of these support mechanisms from diverse caregiver perspectives, which will allow for the creation of individualized, culturally aligned support systems (15:00). 

Autism Treatment in the First Year of Life: A Pilot Study of Infant Start, a Parent-Implemented Intervention for Symptomatic Infants (Rogers et al., 2014)

Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey (Bent et al., 2024)

A Developmental Social Neuroscience Perspective on Infant Autism Interventions (Dawson et al., 2023)

Feasibility and acceptability of a caregiver-mediated early support program, delivered online, for infants at elevated familial likelihood for autism: A feasibility randomized controlled trial (Meera et al., 2024)

The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism (Jan-Vanaken et al., 2023)

Preemptive interventions for infants and toddlers with a high likelihood for autism: A systematic review and meta-analysis (Hampton et al., 2021)

Efficacy of very early interventions on neurodevelopmental outcomes for infants and toddlers at increased likelihood of or diagnosed with autism: A systematic review and meta-analysis (McGlade et al., 2023)

Parent-Mediated Interventions for Infants under 24 Months at Risk for Autism Spectrum Disorder: A Systematic Review of Randomized Controlled Trials (Law et al., 2022)

Infant learning characteristics

The presenter emphasizes that babies come ready to explore, learn, and respond just as caregivers have intuitive skills to nurture, love, and protect. Both shape and influence the others’ actions, resulting in a communication “dance” of synchronized rhythmic steps and movements. No matter who is leading, both sides must be aware of the other and sensitive to each other’s movements and what they mean (17:55). When there is a “misstep,” the dance may stop, and working to regain that attention and engagement is where the Early Start Manual comes in. Vismara outlines six (6) infant learning characteristics, how they present in infants, and how to strengthen caregiver-baby social interactions. 

Attentional flexibility

Attentional flexibility refers to babies’ ability to pay attention to people, objects, and experiences that they find interesting, even when there are distractions. Babies do this when they pick up and explore objects, move from one toy to the next, watch people doing things, or shift focus when something new is introduced (20:25). Attentional flexibility helps babies gather information, build on their learning experiences, and filter out distractions to stay on task.

The speaker provides play recommendations for supporting attentional flexibility (23:15). She suggests offering toys or materials that encourage exploration and interactive play. Holding pieces to your face and naming or commenting about them before you give them to the baby can help them orient your voice to your face. She suggests helping babies complete goals, adding playful sounds, hand gestures, or body movements to help call attention back to you, and giving babies choices for which objects they want to play with (25:15). 

Object use

Babies are naturally curious about objects, and playing with them allows them to explore, try out new behaviors, express ideas, and receive feedback. Vismara explains that babies develop play through patterns of repeated actions, called schemas, which are constantly changing and overlapping (27:10). During play, she suggests taking turns with the same object(s) to create a back-and-forth dance (baby does, you do – repeat) which encourages skill adoption and lets babies know that you are part of the activity/conversation. It is also helpful to be face-to-face during play, to set up toys and spaces in visually clear ways that are not over-stimulating, and to follow babies’ play before leading with your own (29:10). The speaker provides a resource table with play schema definitions and ideas (31:20).

Prelinguistic development

Vismara explains that baby communication begins with crying, which lets caregivers know the baby is hungry, uncomfortable, or upset. This quickly develops into “talking bodies” communication, where babies use their facial expressions, bodies, actions, and gestures to communicate in many different ways (33:00). We chat back to babies when we name and describe things, hold or point to things, copy sounds and expressions, and add silly sounds, hand gestures, or movements to play routines.

To support prelinguistic development, the speaker again suggests playing face-to-face with the baby and talking about everything. Describe what you are doing as you go through routines and make your own “talking body” stand out to babies with playful sounds and exaggerated facial expressions and movements (34:15). It is important to give babies time to respond and for you to put words to their communication methods (35:35). The presenter shows a resource table with activity ideas for strengthening talking bodies.

 Combined, pragmatic communication

Bundling communication behaviors is a critical step in the infant communication journey. Combining face, body, and voice makes communication more efficient and complex, allowing for information retention, skill expansion, and relationship building. Caregivers naturally encourage bundling when we model back-and-forth conversations with babies. For example, when a baby smiles and makes a sound, a caregiver can comment on what excited them (36:55). Vismara suggests giving babies time to think of what they want to say and going with the communication methods that the baby is naturally using. The speaker suggests starting with any two bundles (voice and body, face and voice, etc.) and being flexible, remembering you can always try again later. She warns against holding out for specific communication bundles and underscores working with the babies’ strengths (39:30). The speaker provides another resource table on encouraging bundling through daily routines. 

Speech

Baby babbling is a universal aspect of early speech development that unfolds across several stages and serves as a stepping stone to first words. Babbling is a continuous string of sounds that express babies’ emotions and desire to talk. They often mimic words and language qualities such as tone, pitch, and accent (42:25). To support speech development, Vismara suggests talking to babies and then pausing for them to listen and respond. It’s essential to interpret the intent of what babies say and to keep the conversation going as long as they wish to babble. Helpful tips include mouthing games, imitating baby, and using props to encourage sounds (44:45). The presenter shares a resource table with activities that encourage baby sounds and potential props that you can use to promote conversations. 

Social attention and engagement

Human beings are born with the need and desire to connect with the people around us. We can see this social-emotional connection through babies’ visual attention to people, desire for attention, and drive to start interactions (47:30). Early signs of the social-emotional journey include turning toward familiar faces, turning away when overwhelmed, following faces or objects, and responding to people in their environment. Caregivers can foster this bonding by pausing an activity to cue a response from the baby. For example, hold out a toy, show the play action, and wait for baby to say, “I like this, do it again” (reach, look, smile, move body, make sound) (50:00). 

The speaker reminds viewers to respect babies’ preferences and that it may take some detective work to find their comfort zone inside activities. It helps to repeat your actions when babies are watching and read their cues for what makes them smile. Tips for finding their comfort zone include changing movement pace, adjusting voice and animation, and moving closer or backing up until they feel comfortable. Once you find their smile, create a predictable routine for setting up the fun and pausing for a reaction from the baby before continuing the action (51:15). 

Tips for baby learning

The presenter reminds viewers to build on babies’ interests and experiences with other ideas only after you can follow their play patterns. Building on their preferences can include showing different ways to play with their favorite toys, increasing interaction, and introducing new toys and songs they may like. She notes that not all ideas are winners on the first try but that bridging their interests with new ideas will create understanding and participation through which their skills can expand. Vismara underscores the importance of active play and urges caregivers to expand their involvement in baby interactions (54:20). 

The speaker reiterates that the Infant Start Model is about supporting families with programs and resources that build off of dynamic, authentic early learning experiences. She asserts the need for researchers, families, and clinicians to think deeply about what early autism care looks like and to listen intently to what families are telling us to create collaborative, culturally-informed strategies (55:41). Vismara provides links to manuals, videos, and other resources as well as an Infant Start workshop for professionals (58:55).

Originally posted on October 8, 2024

Dr. Waizbard-Bartov discusses changes in autism symptoms across childhood. She outlines the Autism Phenome Project and study methods for her recent work. The speaker presents findings on the frequency, patterns, and predictors of symptom severity changes across childhood periods in autism. Waizbard-Bartov touches on the intersection of autism symptom severity, assigned sex, and environmental factors. She summarizes presentation findings and considers pathways of future research before the Q&A. 

In this webinar:

1:09 – What is autism
5:00 – Social communication and RRB
12:06 – Autism Phenome Project
16:15 – Study methods
20:15 – Changes in autism symptom severity across childhood
24:30 – Variations in patterns of symptom change
28:05 – Predictors of changes in severity across childhood
30:25 – Sex differences
35:40 – Adaptive function
37:44 – Parental characteristics
39:10 – Co-occurring mental health conditions

What is autism?

Waizbard-Bartov describes autism as a neurodevelopmental condition broadly defined by difficulties with social communication and restrictive, repetitive behaviors (RRB) (1:09). For an autism assessment, social communication differences are subcategorized into social-emotional behavior, atypical nonverbal social behavior, and difficulty creating and maintaining relationships (2:15). RRBs are also subcategorized into stereotyped repetitive speech or actions, excessive adherence to non-functional routines, restricted/fixated interests, and atypical sensory behaviors (4:19). The speaker draws on her time working with preschoolers to illustrate how core characteristics/symptoms of autism range in presentation and severity across individuals and time (8:00). 

Study methods

The presenter outlines the Autism Phenome Project (APP), a longitudinal study of nearly 700 autistic and non-autistic children across five time points from early childhood to early adulthood (12:06). At each time point, the ongoing study assesses blood, MRI, language development, memory and attention, co-occurring conditions, and parental perspectives (14:20). Waizbard-Bartov describes her recent work on autism symptom trajectories across early (ages 3 – 6) and middle childhood (ages 6 – 11.5) (11:25). Her team used APP data for 183 autistic children (30% female-presenting) at three times points: between ages two and three and a half (2 – 3.5 yrs), between ages four and six (4 – 6 yrs), and again between ages nine and twelve (9 – 12 yrs) (16:15). Researchers used the calibrated severity scores from the Autism Diagnostic Observation Schedule (ADOS) to track symptom severity across time and domains (17:50). 

Q1: How common is change in autism symptom severity across childhood?

Researchers divided children into three groups based on observed changes in symptom severity across the first two time points (early childhood; ages 3 – 6). Of these, 54% remained stable, 29% significantly decreased, and 17% increased dramatically in symptom severity across early childhood (20:15). Correlations between behaviors and brain development were also found, where children with increased severity had slower white matter development compared to those with decreased symptom severity (21:43). When assessments were extended to the third time point (middle childhood; around age 11.5), the same three groups were identified, where 49% remained stable, 27% experienced a consistent decrease, and 24% experienced a consistent increase in symptom severity (22:55). Waizbard-Bartov reiterates that about half of children in the study demonstrated changes in severity across early and middle childhood, suggesting that such changes may be expected in autism (24:00). 

Q2: Do patterns of change vary across periods of childhood?

To understand patterns of symptom change across time, the presenter and her team compared early childhood severity changes to those of middle childhood (third time point). Results showed increases in symptom severity are equally as likely to occur during early and middle childhood, while decreases in severity are significantly more likely to occur in early childhood only (24:30). Researchers also found that more than 60% of the sample showed different patterns of change across childhood periods (i.e., decreased in early childhood and stable or increasing during middle childhood) (25:35). Waizbard-Bartov summarizes these findings, asserting that patterns of severity change across periods of childhood in autism (27:15). 

Q3: What predicts directional changes in symptoms across childhood?

To assess predictors of symptom severity changes in autism, Waizbard-Bartov and her team assessed related variables:

Cognitive ability/IQ

Results showed that children with decreased severity in early childhood had a higher IQ at the first two time points and exhibited IQ gains over time (28:45). Comparatively, those with increased severity had lower IQ at both time points that remained stable across time (29:30). The speaker asserts that these findings suggest a strong association between cognitive abilities and symptom severity during early development. 

Sex differences

Researchers found in female-presenting participants, symptom severity is likely to decrease or remain stable. However, for male-presenting participants, increases and decreases in severity are equally likely to occur (30:25). Further, calibrated severity scores revealed that female-presenting individuals show significant severity decreases in total symptoms and, more specifically, in RRB, especially during middle school. Conversely, male-presenting individuals show stable total symptom and RRB scores across childhood (31:15). The presenter discusses sex-compared changes across ADOS items, highlighting the stark trajectory differences between sex groups (33:15).  

Adaptive function

Adaptive functioning is meaningful for everyday life, and all three groups had the same score at age one. However, by age six, those experiencing decreases in severity had significantly higher adaptive functioning than those with increasing severity (35:40). The presenter explains how those with increasing severity did not necessarily lose adaptive function skills but that their rate of progress steadily slowed over time (36:40). 

Parental characteristics

Waizbard-Bartov and her team also found that fathers and mothers of children with decreasing severity were generally older and more educated. Contrastingly, parents of children with increasing severity were younger and less educated. The speaker notes the intersectionality of education and socioeconomic status and its impact on resource accessibility and self-advocacy (37:44). 

Co-occurring mental health conditions

Results showed a significant correlation between aspects of mental health and autism symptom domains (39:10). For example, 21% of participants had significant increases in both the severity of social communication issues and anxiety as they entered elementary school. ADHD levels also rose across middle school, and by age eleven, 84% of participants met the clinical requirements for an anxiety disorder (41:25). In female-presenting participants, improvements in RRB overtime ran parallel to increases in anxiety, where 94% had clinical anxiety disorders by age eleven (44:26). Waizbard-Bartov and her team found no evidence that initial symptom severity can predict changes across childhood, meaning everyone has the same potential for change (45:05). The presenter summarizes the findings for question three, noting that severity changes are correlated with assigned sex, IQ, adaptive functioning, parental characteristics, and mental health conditions (46:45).

• Trajectories of Autism Symptom Severity Change During Early Childhood (Waizbard-Bartov et al., 2021)
• Identifying autism symptom severity trajectories across childhood (Waizbard-Bartov et al., 2022)
• Changes in the severity of autism symptom domains are related to mental health challenges during middle childhood (Waizbard-Bartov et al., 2023)

Conclusion

Waizbard-Bartov summarizes research findings, underscoring that the severity of autism symptoms can change substantially across childhood periods and that patterns of change are not linear. She highlights that a child’s characteristics and environment can predict directional changes and that children have the potential for different severity trajectories regardless of their initial levels (47:55). 

She outlines future research directions, including how severity is affected during adolescence and how interactions between symptom severity and other characteristics play out over time (49:15). The presenter highlights current research around the impact of sex on symptom severity, underscoring the potential effects of camouflaging specific to female-presenting individuals (51:10). The speaker provides thanks and acknowledgments before the Q&A (53:25). 

Originally published on May 15, 2024