Pamela Wisniewski, PhD, presents new research about the online and social media experiences of autistic teens and young adults. Her research findings emphasize teaching teens how to leverage technology to their advantage, stay safe while doing so, and cope with online risks when they are encountered. The presenter asserts that, as parents and educators, it is our job to teach autistic teens online safety skills so they can become well-informed and independent adults. She explains how autistic teens can be disproportionately affected (positively and negatively) by social media experiences, making it important to take evidence-based precautions that protect them from harm without limiting their ability to benefit from what the internet has to offer. The speaker highlights that digital guidelines will vary based on each individual’s needs. 

Handouts are online HERE

In this webinar: 

0:35 – Fear-based narratives and online safety
3:55 – Finding the middle ground
5:05 – Study 1: Online exposure diary study
7:20 – Quotes from teens
11:00 – Parents’ knowledge
13:49 – Why teens don’t tell
15:25 – End of study findings
16:35 – Study 2: Ethnographic study on risks and benefits of social media use
18:20 – Benefits of social media use for autistic youth
21:30 – How young autistic adults perceive digital affordances
24:40 – Quotes and examples from the study
28:50 – Effects of mediating social media use
32:30 – What can we do?
36:55 – Online safety as a developmental process
38:40 – Guidelines for parental control software/applications
40:35 – Study 3: Parental control application reviews from teens
41:50 – Resist fear-based narratives
42:45 – Acknowledgements and thanks
43:25 – Q & A

Fear-based narratives and the middle ground

Wisniewski describes the fear-based narratives that surround online safety for teens, particularly in the context of autism (0:35). She asserts that fear-based beliefs lead to reactive, fear-based decisions such as limited access or total abstinence from technology. The speaker states that our aim should be to find ways to protect our children while giving them the opportunity to benefit from what the internet can afford them (1:30). Wisniewski shares a personal story about opportunities her daughtered gained through online learning and highlights that access to the internet allows youth and adults to create relationships, learn, build essential communication and social skills, and much more (3:55). These skills will assist youth and young adults to live well-adjusted and independent lives when they grow up (4:50). 

Study 1: Online exposure diary study

The presenter outlines a diary study of 68 parents and teens (ages 13 – 17) in a representative sample of both neurodiverse and neurotypical individuals (5:05). She notes that although participants did not disclose autism diagnosis, this study shows that we all face the same struggles, regardless of whether or not our teen is autistic (5:35). The study found that the majority of youth did not intentionally seek out risks and that most risks were medium to low severity (6:08). 47% of teens took active measures to cope with online risk, and almost half of reports were resolved within a week. Many reports also showed that online experiences allowed teens to build important social skills, like boundary setting, problem-solving, and empathy (7:00). These findings, Wisniewski asserts, speak to the intelligence and capability of our teens and the need for support and education for online risks. 

Online experiences

Wisniewski states that study findings show clear evidence of the complex and heavy things our youth are seeing online. However, these data should also give hope and a better understanding that youth are intelligent and do know how to protect themselves online (7:20). She reiterates the need for parents and caregivers to readjust and meet young adults where they are and shares a quote: 

“A friend of mine was feeling particularly sexual, and it showed in her texts. It’s not like I planned it, but I certainly wasn’t opposed to it (9:45).” – 16 year old male

The presenter understands that this may make parents uncomfortable at first but asks viewers to remember what they were doing and what they were interested in when they were 16. Interest in sexuality is developmentally normal, she continues, but we need to be sure that both youth and parents/caregivers are being healthy about it. 

Challenges in parent-teen communication

The study found that teens often perceive parents’ attempts to address online issues as lectures or punishments (12:08). Teens also reported that they didn’t ask parents for help due to concerns about unnecessary awkwardness, overreactions, punishments, or making things worse (13:49). Wisniewski highlights that at the end of the study, parents reported significantly lower levels of family communication than in pre-surveys (15:25).

Study 2: Risks and benefits of social media use for autistic adults

The speaker outlines a collaborative ethnographic study that included autistic young adults, parents, and support staff (16:35). Social connections with distant family members, reduction of boredom, pursuit of special interests, and meeting like-minded individuals were identified as valuable aspects (18:20). However, she continues, the sensitivity of autistic youth to negative online experiences was also highlighted. Specific drawbacks included difficulty understanding online social queues, online harassment and social drama, and privacy concerns (19:40). Wisniewski explains that autistic teens and young adults are more likely to take online social drama to heart and may ruminate over these interactions, which can cause additional anxiety even if they are not directly related to the social situation. She highlights the role that parents/caregivers can play in helping youth self-regulate in these instances (21:00). 

The study found that autistic youth perceive online affordances differently from their non-autistic peers. Four major themes were found:

Sharing content

According to the study, autistic young adults frequently assume that content is directed specifically to them, with a specific purpose (21:40). They also tend to take things literally and may overshare personal information regarding themselves or others without considering the need to protect themselves (26:35).

“I had to do that [share my phone number] because when I made my account, it said phone number or email.” – Participant

Connecting with others

The study showed that boundaries are often very rule-based (i.e., you shouldn’t post this or that) and that autistic young adults find it challenging to process and understand when someone breaks those rules. Participants explained that social media helps autistic youth maintain positive relationships. However, it can sometimes be difficult to differentiate between online and real-life friends, so they may expect more from a digital relationship than others and get hurt when their expectations aren’t met (22:40). 

“[They] have a hard time telling the difference between a Facebook friend and a real friend. So you’re friends on Facebook, you’re friends. When that’s not really what it is.” – Staff

Consuming content

The study revealed that autistic young adults have visceral reactions to emotional content and often trust things at face value instead of considering the possibility that it is false information. Findings suggest that the internet can sometimes lend to addictive consumption as well, as it’s easy to become overly interested in a narrow subject or obsessive tendencies with things like pornography (23:25).  

Networked interactions

Findings showed that online activity enables social engagement with larger communities with shared interests. Simultaneously, however, it connects individuals with strangers who may have malicious intent. Participants reported difficulty in interpreting the intentions of others in a way that facilitates positive interactions and said they are sometimes overly direct, making it difficult to maintain online relationships (23:55). 

“I thought I was her friend, but she said, ‘You’re not because we don’t know each other well enough.’” – Participant

Wisniewski summarizes the findings, explaining that the literal way of thinking common in autism, combined with the unwritten social queues and ambiguity of the internet, make safely navigating the internet especially difficult for autistic individuals and their families (26:35).

How parents and support staff mediated risk

Recorded strategies for online risk mediation included restricted technology access, monitoring/parental control software, and, in rare cases, formal training and curriculum (28:50). “Joint trouble-shooting,” or help from a parent or staff, reinforced appropriate online social behaviors and mediation provided direct support for emotional co-regulation. Wisniewski notes that perceived punishment led youth to go into defense mode and hide their online behaviors. She also highlights the overall reliance on support networks instead of personal problem-solving development and cites a lack of training and education as a root cause (30:40). 

Guidelines for responsible technology use

Wisniewski asserts the need to reframe access to technology as a responsibility instead of a privilege. She relates common online mediation tactics to giving teens the keys to a car but taking away their driving privileges when they get in an accident, even though you didn’t teach them anything about driving. She asserts that being able to use the internet safely is a learned skill. Therefore, parental involvement should focus on teaching responsible online behavior rather than restricting access (32:30). 

The speaker states that online safety should become part of the everyday discussion for developing socio-emotional skills (e.g., bullying), mental health education (e.g., self-harm, depression), and sexual education (e.g., forming a healthy relationship) (34:15). The presenter urges listeners not to treat online risks as more deviant than offline risks and reiterates that the abstinence approach limits open communication. She highlights that teens report wanting to share information with parents/caregivers, so we must allow them to engage with a sense of curiosity and safety instead of judgment (36:00).

Online safety as a developmental process

Successful online safety strategies include setting up parental controls, transparent communication, and gradual increases in privacy as responsible behavior is demonstrated (36:55). For example: 

1. Set parental controls when a child is first given access to technology (ages 8 to 12).
2. Teach them how to navigate potentially risky situations. Focus on risk-coping skills. Give them exit strategies (ages 8 – 14).
   1. Example: Discuss hypothetical situations, walk through the scenario, and teach them the safety skills required for safe sexting, pornography, and healthy relationships.
3. Trust your teen to make good decisions on their own. Set clear boundaries and let them know you are there to help if they need you (ages 15 – 18).

Most importantly, Wisniewski reiterates, take a deep breath and withhold judgment. Note that the appropriate age for each step will vary according to the individual. The speaker provides guidelines for parental control software/applications (38:40). She outlines an app review study from Google Play that found teens often feel parental control apps harm their relationships with their parents (40:35). No app can guarantee safety – so parents and caregivers must be involved. Wisniewski reminds viewers to resist fear-based narratives and suggests that instead, we figure out the ways to best support autistic young adults in their lives online and offline (41:50). She provides thanks and acknowledgments (42:45) before the Q & A (3:25).

Dr. Judy Van de Water, Ph.D., explores the role of gestational factors in the development of autism. She explains how maternal immune activation, antibody patterns, and immune markers play significant roles in neurodevelopment and may contribute to the etiology and phenotypic variation of autism. The speaker presents various investigations and critical findings. She asserts the need for further research on the interaction of these gestational influences with other genetic and environmental factors. Van de Water provides thanks and acknowledgments before the Q&A.

Take the knowledge quiz for this presentation HERE

In this webinar:

1:02 – Potential etiologies of autism
3:03 – Maternal Immune Activation Model
5:30 – Research sample characteristics
7:40 – Study: Maternal prenatal cytokines
11:05 – Study: Newborn immune markers
15:06 – Study: Effect of sex on newborn immune system profile
17:30 – Maternal autoantibody related autism subtype (MARA)
19:25 – Target proteins and brain development
20:46 – Study: MAR antibody test
24:26 – Study: Early markers of autism – prenatal validation
27:40 – MAR antibody patterns phenotypes
29:30 – Summary of clinical findings
31:03 – Study: Translational animal model
34:15 – Rodent model findings
38:40 – Conclusions
41:55 – Q & A

Introduction

Van de Water lists potential etiologies for autism, including genetic predisposition, immune dysregulation, and infections during gestation. She explains that maternal infection, specifically inflammation resulting from infection, has been implicated as a risk factor for autism and schizophrenia (1:02). The speaker introduces the Maternal Immune Activation Model, which proposes that when an inflammatory event occurs during pregnancy, the mother’s immune response may be more active, leading to the transfer of different factors to the fetal compartment (e.g., cytokines) Such immune dysregulation can increase the risk of altered fetal neurodevelopment (3:03). Van de Water notes that genetic susceptibility, gestational timing, intensity of immune response and other postnatal events all play a role in autism etiology (5:00). 

Inflammatory response during pregnancy

The presenter describes recent investigations into risk factors for autism and developmental delays (5:30). She summarizes sample collection and research methods for a study that assessed maternal prenatal cytokines in mothers of autistic children with intellectual delays (ID), mothers of autistic children without ID, and mothers of children with ID but not autism (7:40). Researchers found that mothers of autistic children with ID had the highest levels of inflammatory cytokines and chemokines compared to all other groups. This suggests, Van de Water continues, a lack of selective immune regulation in these women and a potential link between immune activation and ID in autistic individuals (10:08). A second study found that newborns diagnosed with autism and delayed development (DD) had lower levels of specific cytokines and chemokines at birth compared to those with typical development or DD without autism (11:05). Van de Water discusses particular chemokines and cytokines that may impact autism etiology (13:30). 

The speaker details another study investigating the effect of offspring sex on immune profiles at birth (15:06). Researchers found that neonatal immune signatures differ by sex regardless of the neurodevelopmental outcome. However, control males had higher levels of certain immune markers than females, and autistic females with DD had higher levels than males with autism (17:20). The speaker asserts that such sex-specific differences in immune markers may contribute to the variability in autism phenotypes, highlighting the need for individualized treatments (16:15). 

Maternal autoantibody-related autism

Van de Water discusses the maternal autoantibody-related autism subtype (MAR) (around 20% of cases), where mothers have antibodies that are reactive against proteins in the developing brain (17:30). She explains that during fetal development, the mother’s antibodies cross the placenta to provide immune protection for the fetus. In the case of MAR, some antibodies can bind to pre-neuronal cells, which leads to different brain development. The speaker presents a MAR antibody test designed by her team (20:46). Initial findings revealed antibody patterns specific to autism in 20% of the sample and that mothers with these antibodies were 31 times more likely to have a child with autism (22:30). 

The presenter outlines a second study that validated the MAR antibody test with prenatal data (24:26). They also found that specific MAR antibody patterns were associated with phenotypic differences in autism. Van de Water therefore asserts that these patterns could not only serve as autism biomarkers but could also inform more specific and individualized interventions (27:40). She summarizes clinical findings from the previous studies and notes that as autism incidence increases, they see an increase in MAR as well (29:30). 

Translational animal models 

The speaker details translational animal models and why they are essential in preclinical trials. She explains how they used animal models to determine whether MAR autoantibodies are related to etiology or are just biomarkers (31:03). Animal studies generally include measures of behavior, brain scans, and cell cultures (32:15). Van de Water outlines an antibody study that found both mice and rats showed altered social behavior, self-grooming, and increased repetitive behaviors and produced the same antibodies found in humans with autism (34:15). These data, she continues, also exhibit differences in brain volume, with males and females displaying distinct patterns of brain development (37:30). 

Van de Water summarizes the main conclusions from the animal models. She highlights that gestational immune dysregulation may contribute to altered neurodevelopment and that antibodies localize to developing animals’ brains. The speaker emphasizes that we see enlarged brains in humans, mice, monkeys, and rats with gestational exposure to MAR autoantibodies and underscores the structural effects of MAR antibodies and the usefulness of animal models (38:40). She provides acknowledgments and thanks to collaborators before the Q & A (41:55). 

Dean Alexander, Ph.D., discusses pica, the ingestion of non-food substances, which has received insufficient attention as a common, sometimes lethal, form of self-injurious behavior. He discusses the prevalence of pica in autistic individuals and the long-term health implications associated with pica behavior. The speaker details numerous case studies and highlights the need for multidisciplinary collaborative treatment strategies based on functional behavior assessments. Alexander describes available treatment strategies and presents the SMART acronym for treatment recommendations. e.

Handouts are available for download (PDF) HERE
Take the knowledge quiz for this presentation HERE

This is a joint presentation by ARI and the World Autism Organisation.

In this webinar: 

2:12 – What is pica
5:22 – Study: Soda can and rubber ball
8:00 – Challenges with behavioral treatments
13:00 – Sensory stimulation and pica
14:20 – Pica prevalence and impact
16:08 – Study: GI symptoms and pica
17:30 – Study: Autism, GI symptoms, and pica
19:00 – Study: Pica prevalence in autistic adults
25:25 – Pica as a phenotypic subgroup
26:30 – Studies: polyvisol, vivinex, iron supplements, zinc and antioxidant therapy
29:46 – Metabolic profiles and phenotypic subgroups
31:57 – Why nutritional interventions
34:04 – Comprehensive vitamin-mineral interventions
36:10 – Dietary changes
38:21 – Study: Homeopathic treatment
44:28 – SMART interventions

Pica and behavioral treatments

Pica is the ingestion of inedible substances and is the most dangerous form of self-injurious behavior associated with autism (2:12). Items frequently ingested include generally harmless things like dirt, leaves, and grass, as well as dangerous and potentially lethal items like rubber gloves, clothing tags, and screws (3:30). Alexander details a case study involving a 50-year-old autistic man who ingested cigarette butts. The presenter explains how treatment strategies capitalized on the individual’s preferences by incorporating soda cans and a red rubber ball into his walk to work. Over six months, the client’s nicotine and cotinine levels decreased from those of a chain smoker to zero (5:22). Alexander highlights the simplicity of this case, noting the trial and error implicit in creating holistic treatment strategies (6:43). 

Establishing effective behavioral treatments for pica can be challenging due to costs, availability, environmental restrictions, and the generality of treatments across time (8:00). The presenter notes the importance of functional behavioral assessments, which help identify the factors that drive and maintain pica behavior, like attention-seeking, sensory issues, pain attenuation, or escape/avoidance (11:00). Sensory stimulation, he continues, is often a significant factor in maintaining pica behavior and can be challenging to address. Solutions to sensory drivers can include finding substitute foods with similar sensory properties (i.e., grape nuts in place of dirt) or engaging individuals with play during unstructured hours (13:00). The presenter notes that pain attenuation is often related to dental issues (14:01). 

Pica Prevalence and Impact

Around 23.2% of autistic children and up to 60% of autistic adults experience pica (14:20). The speaker outlines two studies on the intersection of autism, pica, and GI issues in children (16:08). Researchers found that autistic children and children with developmental disorders who also have pica have a higher prevalence of GI signs, symptoms, and diseases compared to those without pica (15:24). Prevalence of food cravings and specific GI conditions like irritable bowel syndrome (IBS) and gastroesophageal reflux (GERD) are also higher in autistic children with pica than those without (17:30). To assess the prevalence and co-occurring conditions in adults, researchers examined ten years of medical records compared to a comprehensive list of symptoms and diseases (19:00). Four groups were assessed: autism only, autism and pica, pica without autism, and a control group of developmentally disabled individuals without pica. Findings revealed that the prevalence rates across the ten most frequently occurring diseases were two to three times higher for individuals with pica, where the autism and pica group had the highest rate (22:33). Alexander emphasizes that pica takes a severe toll on the body over time which can lead to shorter life expectancy and higher mortality rates. He asserts that autistic individuals with pica may represent a phenotypic subgroup characterized by GI symptoms and requiring specialized treatments (25:25). 

Intervention Options

Alexander outlines research showing that autistic children have relatively less diversity in gut bacteria and generally have fewer healthy bacteria than unhealthy (30:55). These findings emphasize the importance of including nutritional interventions in treating pica. The speaker underscores that dietary interventions do not necessarily rely upon practitioner availability and so may be more accessible (27:36). He details promising research using iron supplements, liquid multivitamins (poly-vi-sol), specialized formulations (vivinex) (26:30), and zinc supplements and antioxidant therapy (28:42) to reduce pica behaviors like coprophagy (ingestion of feces) in autistic individuals. The presenter discusses a study that revealed significant differences in metabolic profiles between autistic children and their non-autistic peers (29:46). Targeted nutritional therapies, including folinic acid, betaine, and methyl B12, succeeded in correcting metabolic imbalances. Alexander asserts these findings suggest the presence of a metabolic phenotype and that aspects of autism are treatable. 

Maintaining a healthy gut is critical for the body’s ability to fight infection, digest food and produce vitamins (31:57). The presenter outlines other nutritional treatment approaches, including gluten-free, casein-free, and Mediterranean diets (37:17), as well as comprehensive vitamin-mineral interventions (34:04). Alexander details a case study where a seven-year-olds pica behaviors stopped just one week after implementing a gluten/casein free diet (36:10). The speaker summarizes the behavioral, dietary, and vitamin/mineral based interventions and highlights the need to try and assess each strategy. He outlines a homeopathic treatment study that showed remarkable improvements in a 15-year-old boy with severe autism. Supplemental behavioral interventions alongside homeopathic recommendations significantly improved the child’s functions, behavior, communication, and quality of life (38:21). 

S.M.A.R.T. Interventions

Alexander highlights the need for collaborative treatment strategies and introduces the SMART acronym for treatment recommendations (44:28): 

Safety: Safety precautions are critical. Potential dangers and treatment environments must be appropriately assessed based on individual needs.

Medical issues related to eating habits, food cravings, stomach pain, antibiotic use, and mouth sensitivities must be addressed. It is best to be assessed by a team of professionals including, but not limited to, a dentist, GI specialists, and nutritionist (45:33). 

Analysis/assessments of behavior function and consequences are best practices. Such assessments are critical for accurately identifying drivers and potential treatments for pica behavior (47:40). 

Reinforcement inventory or a “menu” of activities or objects that help minimize Pica behavior (e.g., soda cans and rubber balls). These can aid in implementing differential reinforcement strategies and finding alternatives. 

Treatment packages or a combination of various approaches to create a collaborative treatment strategy. Treatment packages include psychotherapy, pharmacological treatments, behavioral techniques, and nutritional support. Such holistic therapies are generally the most effective (49:44). 

Dean Alexander, Ph.D., discusses pica, the ingestion of non-food substances, which has received insufficient attention as a common, sometimes lethal, form of self-injurious behavior. Behavioral approaches to treatment, more often than not, fall short. Biological intervention, if supported, may hold out new promise.

Handouts are available for download (PDF) HERE

This is a joint presentation by ARI and the World Autism Organisation.