Connie Kasari, PhD, details what contemporary research reveals about supporting non-speaking or minimally verbal autistic children. She highlights how far the field has come in the past two decades and emphasizes the need for contemporary research to focus on what strategies benefit whom and why. The speaker discusses JASPER, a modular intervention based on social communication. She outlines recent studies and video examples showing positive language outcomes for JASPER on its own and in tandem with other interventions. Kasari underscores the usefulness of AAC devices in spoken language development, noting the lack of interventions that use even low-tech augmentative supports. The speaker summarizes her presentation and focus for future research before the Q&A.

Handouts are online HERE

In this webinar

2:00 – Early intervention in autism
7:00 – Core challenges: Video
14:16 – Study: JASPER intervention outcomes
26:00 – Intervention trajectories
31:50 – Study: Intervention combinations and AAC
36:11 – Implications for practice
45:45 – AAC case studies
46:45 – Summary
48:00 – Q&A

Early intervention and social communication

Kasari explains that nearly all autistic children will require support/intervention on engagement, imitation, joint attention, and play (2:00). She states that the goal of early intervention is to reduce the number of autistic children who have significant language impairment by the time they start school. Language ability remains one of the strongest predictors of positive long-term outcomes, making support strategies that target social communication skills—such as joint attention, engagement, and play—especially critical (4:00). Importantly, Kasari notes that research hasn’t focused on for whom an intervention works or why a particular intervention provides benefit for certain people. Understanding this is critical to expanding care and assessment across the board (5:30).

The speaker discusses core challenges that may trigger an intervention and shows videos comparing social communication in an autistic and a non-autistic child at 18 months old. Kasari highlights differences between the videos, noting the child with autism is more interested in looking at the objects than communicating (7:00). She explains how this pattern often translates to parent play, making it feel frustrating or not enjoyable for many parents/caregivers, and discusses two video examples of this (9:30).

Social Communication Research

The speaker says we know the least about children who are most delayed in development, who have limited language skills, and those whose families have less access to information about studies in their communities. She explains that most autistic children have never been in a research study. As a result, our evidence base does not represent the entire spectrum of autism (13:15). Kasari and her team focus on researching interventions for non-speaking and minimally verbal autistic children that can be conducted in community settings.

JASPER: Joint Attention, Symbolic Play, Engagement, and Regulation

The presenter describes JASPER, a comprehensive social communication/language intervention that can float inside other interventions, be used on its own or used sequentially (14:60). Kasari presents one of her recent publications comparing outcomes in 164 children, 3 -5 years old, across three sites after four months receiving Discrete Trial Training (DTT) or JASPER (video examples) (19:00). Results from the study show that both groups made significant language gains, and 45% moved toward phrased speech (putting words together).

Intervention trajectories

The goal of the intervention was to avoid the label of minimally verbal or profound autism by school age. Kasari defines profound autism as children with a developmental quotient (DQ) below 50, aged 8 or older, with poor adaptive skills (often minimally verbal or non-speaking). She notes that this is a relatively new term and considers how early we can predict these outcomes (26:00). The speaker reviews DQ data for a group of 264 children at very young ages. By age 8, 47% did not meet criteria for profound autism, although 25% of this group had a DQ lower than 50 at age 4 (28:30).

Kasari summarizes study takeaways, noting that DQ can help predict later development but is not a perfect predictor on its own. She reiterates the importance of early intervention and highlights understanding the 25% who moved off trajectory as a critical next step (29:25).

Combination interventions and assistive technology (AAC)

The presenter reiterates the heterogeneity in response to interventions, underscoring the need to personalize, tailor, and target interventions according to each person. This will also help us address for whom the intervention works and why. Kasari defines adaptive intervention designs as a sequence of decision rules that specify whether, how, when (timing), and based on which measures, to alter the dosage (duration, frequency, or amount), type, or delivery of treatment(s) at decision stages in the course of care – this is what her group employs (29:45).

Kasari details a study with 61 children, 5-8 years old, who are minimally verbal and had received 2 years of intensive early intervention (most ABA). All children received JASPER plus EMT, a spoken language intervention. Half of the children were randomized to receive AAC devices to test if these supports help with spoken language. Children attended two sessions per week, and at the 12-week follow-up, those assessed as slow responders were re-randomized to either add AAC or to up to 3 sessions per week. Outcomes for socially communicative utterances were assessed after another 12 weeks (31:50). Those who used AAC devices from the beginning showed significant increases and also had more novel words and joint attention language. Those with only JASPER and EMT made slow but steady progress. Researchers also found that from entry to midpoint to exit, parent-initiated engagement stayed the same while child-initiated engagement increased (34:15).

Implications for practice

The speaker notes that assistive technology are still not used regularly with children, be it a device, sign language, or another low-tech augmentative device; they are not being used as much as they should (36:11). Kasari returns to the child from the first video and describes how they changed tactics the second day by lowering the play level and adding an AAC device with button-words (video provided) (40:00). She notes that this child entered regular education at age 7, speaking full sentences. He used the AAC for a few years as a transition to spoken language. The presenter describes another case in which a child used AAC to support communication. He made progress over time, eventually asking the therapist to put phrases that he hears in the AAC device so he can listen to them and learn the sounds. In a follow-up video, the child is speaking in full sentences (45:45).

Kasari summarizes her presentation, highlighting that we can improve social communication and language outcomes for delayed autistic children and that these early skills need to be direct targets for support/intervention strategies. She reiterates how research must inform practice and, therefore, focus on answering questions about personalized interventions (how long do we wait, what do we change to?) (46:45) before the Q&A (48:00).

Emily Ferguson, Ph.D., discusses self-regulation strategies for self-injurious behaviors (SIB). She outlines recent research on the frequency and distribution of different SIBs across a large sample, underscoring the importance of assessing individual behavior severity instead of an overall SIB score. The presenter considers the role of emotion regulation in SIB interventions. Ferguson considers emotion recognition, coping strategies, and prevention methods and provides free online resources for parents and clinicians.

In this webinar:

2:25 – Self-injurious behavior and autism
7:20 – Study: Frequency and distribution of unique SIBs
10:30 – Results
17:25 – Summary
19:45 – Helpful questions
22:20 – Adult self-reports
24:12 – Dialectical behavior therapy (DBT)
27:00 – Emotion regulation (ER) and challenging behaviors
30:45 – Emotion recognition and ER strategies
33:55 – Prevention
39:30 – Resources
42:40 – Q&A

Self-injurious behavior and autism

Ferguson explains that self-injurious behaviors (SIBs) are present in 40 – 50% of autistic people. They often persist in varying forms and intensities across the lifespan and significantly increase the likelihood of tissue damage or physical injury, hospitalization, and more restrictive residential placements (2:25). Common forms of repetitive behaviors include head-banging, skin-scratching, self-hitting, hair-pulling, lip or cheek-biting, nail-biting, skin-picking, and hitting against hard objects. Research shows that lower speech production, lower cognitive functioning, greater emotion dysregulation, greater sensory sensitivity, sex, and age are all linked to greater severity of SIB (6:30). The presenter notes that measurements and conceptualization of SIB vary across studies (5:25).

Frequency and distribution of unique SIBs

The speaker outlines her recent publication on the frequency and distribution of unique SIBs across a large sample. The study uses 593 survey responses to explore speech level, cognitive function, emotion dysregulation, and sensory sensitivities for each of the eleven most common non-suicidal SIBs (7:20).

Roughly 30-50% of caregivers reported mild to severe concerns for many types of SIB, highlighting the importance of looking at severity for every kind of SIB instead of an overall score. Results show that higher emotion dysregulation, or difficulty managing, responding, or calming strong emotions, was significantly associated with greater severity of nine types of SIB ranging from self-hitting to skin-picking (10:30). Higher sensory hypersensitivity was associated with greater severity of self-scratching (with and without tissue damage), repetitive hair-twirling, and skin-picking and lip-biting (with and without tissue damage). Ferguson asserts these findings indicate that these types of SIB may be a means of self-soothing or communicating distress in response to overwhelming sensory stimuli (13:30).

Self-scratching, self-hitting, and lip-biting (with tissue damage) were significantly associated with lower IQ, suggesting that the presence of intellectual disabilities (ID) might increase the risk of engaging in specific types of SIB. The study also found that youth who speak in full sentences demonstrate lower severity of self-hitting and head-banging than youth who use no words to communicate. Ferguson reiterates that self-hitting and head-banging may be a way of communicating, especially for autistic people with ID who are non-verbal (15:45). 

She summarizes research findings, reiterating the important insights we can gain by examining the severity of unique types of SIB rather than their overall occurrence. She notes that head-banging and self-hitting can result in serious physical harm, posing a greater risk to those with lower IQs and speech ability (17:25). 

The speaker suggests asking these questions to help determine causes and care strategies for SIB (19:45):

• Is the situation placing demands that exceed ER skills? (Adaptive emotion regulation (ER) skills)
• Is the behavior in response to unmet sensory needs or sensory overload? (Sensory dysregulation)
• Are the demands on the individual too high or low for their cognitive level? (Cognitive capacities)
• Does this person have a functional way to communicate? (Adequacy of communication system)

•  Exploring the Heterogeneity of Self-Injurious Behaviors in Autistic Youth: Patterns, Predictors, and Implications for Intervention (Ferguson et al., 2025)

Adult Self-Reports

The presenter outlines a recent study by Moseley and colleagues that asked autistic adults about the perceived role of non-suicidal SIBs (a more extensive list than the previous study). Participants reported hurting themselves in order to feel something, change emotional pain into something physical, relieve stress or pressure, deal with frustration, shock or hurt someone, self-punishment, and to prevent hurting themselves in other ways (22:20). 

• A ‘choice’, an ‘addiction’, a way ‘out of the lost’: exploring self-injury in autistic people without intellectual disability (Moseley et al., 2019)

Dialectical behavior therapy (DBT)

Dialectical Behavior Therapy (DBT) was developed for people with borderline personality disorder but can be applied to people across the spectrum of life. DBT is often a first-line treatment for people who engage in SIB or have suicidal thoughts or tendencies. It works to identify and distinguish repetitive behaviors, accepting the ones that serve a good purpose while changing others that increase the risk of harm to self or others (24:21). 

Emotion regulation and challenging behaviors

The speaker outlines the pathway from difficulties with ER to challenging behavior presentation and considers the role that self-regulation has in SIB interventions (27:00):

 Individual factors (hungry or tired) → precipitating cues (loud/surprising noise) → difficulty identifying and labeling emotions (overwhelmed) →  negative experience continues or increases (no coping strategy) → challenging behavior is expressed.

Emotion recognition

Emotion recognition can be difficult for everyone, and creating a personalized feeling chart can significantly help. Ferguson discusses how to make a feeling chart that captures the sounds and feelings of one’s emotions as well as what someone needs in those moments (30:45). 

Emotion regulation (ER) strategies

ER strategies include coping skills and co-regulation techniques, which the speaker suggests should be practiced daily. For caretakers, it is essential to do these things with their child or patient to model effective coping strategies. Ferguson highlights the benefits of parent skills training and provides a free training video that teaches some quick coping skills for calming down and returning to a place where you can work through problems and big emotions more effectively (31:40). 

• https://www.youtube.com/watch?v=0cq5RuE8SXk

Prevention

SIB prevention techniques focus on reducing the likelihood of distressing situations or contexts. If an SIB consistently occurs in a specific location, consider what about that place may cause distress to you or your child. It’s also helpful to note setting events, like sleep, that can affect irritability and ER throughout the day (33:55). The Research Units in Behavioral Intervention (RUBI) provides free online materials to help with SIB prevention.

• https://academic.oup.com/book/1248/chapter/140180019

Functional behavior analyses of problem behaviors are commonly used to identify antecedents, behaviors, and consequences and can help identify positive and negative communication cycles. Ferguson emphasizes that behavioral approaches must be strengths-based and aimed at reducing negative impact. Other prevention methods include mental health therapies and parent training in behavior management, as outlined in the RUBI resources and Parent-Child Interaction Therapy (ages 2 – 7) (35:55). The speaker shares a clinical guide for treating severe behaviors, toolkits, and ECHO training (39:30) before the Q&A (42:40). 

Resources provided during the talk and in text:

• Article by Dr. Ferguson mentioned in the talk: https://onlinelibrary.wiley.com/doi/full/10.1002/aur.3269
• ECHO Autism Challenging Behavior: https://echoautism.org/challenging-behavior/
• Autism Speaks Challenging Behavior Toolkit: https://www.autismspeaks.org/tool-kit/challenging-behaviors-tool-kit
• RUBI intervention online materials: https://academic.oup.com/book/1248/chapter/140180019
• Moseley article referenced during the talk: https://link.springer.com/content/pdf/10.1186/s13229-019-0267-3.pdf

Originally published December 3, 2024.