Dr. Gray Atherton discusses the critical role of age and age of diagnosis in shaping the quality of life for autistic individuals. She provides a brief history of autism understanding and considers how changes in diagnostic criteria and cultural stigmas have affected the “lost generation.” The speaker details two studies that emphasize the importance of early intervention and how best to support people who receive a late diagnosis. Atherton explains that diagnosis directly affects quality of life, making detection and diagnosis critical for adults. She notes that further research must incorporate lived experiences and underscores the need for investment in care across the lifespan. 

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In this webinar: 

2:30 – Autism prevalence estimates
5:00 – Diagnosis differences by gender
8:30 – Autism through the ages
10:30 – DSM description evolution
13:15 – Special education and the Salamanca Statement
17:10 – Changes in autism assessments
18:20 – The lost generation
21:00 – Study: Age of Diagnosis, Autistic Traits, and Quality of Life
23:25 – Results
27:00 – Quality of life and aging
31:00 – Study recap
31:30 – Study: Lived experiences of late diagnosed adults
33:20 – Themes and results
34:25 – Participant quotes
39:00 – How to disclose
41:20 – Overview of study results
44:35 – Future directions
47:22 – References and contact information
47:30 – Q &A

Introduction

Atherton states that autism is a lifelong condition and highlights that less than 1% of research funding goes to lifespan issues in autism. She discusses differences in prevalence rates by country and gender (3:20) as well as environmental and heritability drivers (6:30). The speaker provides a brief history of autism understanding through the ages, highlighting significant milestones and epidemiological studies from 1943 to today (8:30). She details changes in autism prevalence from 4.5 in 10,000 children in 1966 to 1 in 54 children in 2013 (11:30). Atherton attributes the rise in prevalence to improved diagnostic practice and increased awareness and educational inclusion (12:25). 

The “lost generation” refers to autistic individuals who received an autism diagnosis in adulthood and therefore lost the time and support afforded to those who receive an early diagnosis (18:20). Atherton outlines two recent studies investigating why these individuals are being missed and how it affects their quality of life: 

Study One: Age of Diagnosis, Autistic Traits, and Quality of Life

The first study focused on understanding the impact of age of diagnosis on quality of life and autistic traits. Atherton and her colleagues examined a sample of individuals diagnosed with autism later in life by assessing responses to five autism diagnosis and symptom questionnaires (21:00). Findings revealed that about two-thirds of females were diagnosed over 18. In contrast, the majority of men were diagnosed under 18. Despite being diagnosed later in life, females reported high levels of autistic symptoms (24:45). There was a significant association between late diagnosis in adulthood and lower quality of life. These individuals reported higher levels of autistic traits, including social anxiety, loneliness, and lower satisfaction with life. In contrast, earlier diagnosis was associated with better quality of life outcomes (29:15).

Study Two: Qualitative Interviews with Late Diagnosed Adults

The second study involved qualitative interviews with adults who received an autism diagnosis later in life (31:30). Atherton highlights the importance of exploring their lived experiences to gain insights into the challenges and benefits of late diagnosis. Themes found during interviews included barriers to diagnosis, negative sentiments to non-diagnosis, benefits of diagnosis, and the pros and cons of receiving a diagnosis (33:20). The speaker quotes study participants for each theme, demonstrating the intersectionality of late diagnosis and quality of life. Overall, participants overwhelmingly expressed positive sentiments about receiving a diagnosis in adulthood. One person described it as a signpost that provided answers and guidance on how to approach life differently and feel proud of one’s identity (37:29). Diagnosis brought relief, clarity, access to appropriate support, and personal advocacy. However, participants also expressed some barriers to diagnosis, such as parental perceptions and societal misconceptions about autism (39:20).

Implications of Late Diagnosis

Atherton asserts that these findings underscore the significance of early diagnosis in autism (41:25). She highlights diagnostic disparities between men and women and considers potential drivers. The speaker emphasizes that receiving a late diagnosis matters and assures viewers that, although a late diagnosis may be complex and confusing, the identity and understanding that come with it can have a significant positive impact on personal acceptance (43:15). Early detection enables timely interventions, tailored educational approaches, and access to support services, all of which contribute to better outcomes for autistic individuals.

Future Directions

The presenter highlights the need to recognize autism in females and change stereotypes of autism as a male condition. We must also reduce stigmas, continue care into adulthood, and support the “lost generation” as they realize their diagnoses. She asserts the need for increased research into cultural differences, societal perceptions, and access to diagnosis and support (45:00). The speaker also discusses the significance of studying the experiences of individuals from diverse backgrounds, including women, people of color, parents of children with autism, and employment experiences of autistic people.  

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.

Hannah Belcher, Ph.D., Autistic researcher, speaker, and author, discusses the often late and missed diagnosis of autistic females. She dives into the gender gap inherent in autism research, assessments, and clinical understanding, demonstrating how this has led to late and misdiagnosis of autism in women. The speaker presents contemporary research working to uncover a female autism phenotype and discusses masking as implicated in mental health and diagnosis. Belcher continually asserts the societal need for greater understanding and accommodation of autistic womens’ lived experiences and outlines what needs to change before the question and answer session.

Learn more about our speaker Hannah Belcher, Ph.D. HERE

Take the knowledge quiz for this presentation HERE

In this webinar: 

1:27 – About Hannah Belcher
3:09 – Taking off the Mask book highlight
3:36 – Language, terminology, and content warning
5:38 – Key content
6:00 – What do we know about autistic women?
7:30 – Missed diagnosis and current diagnostic basis
8:54 – Autism Quotient background
9:48 – Study: Autism quotient gender bias
11:11 – Study: Assessment measures gender bias
12:45 – Changing prevalence rates
13:30 – Autism gender gap
14:25 – Female phenotype theory
17:30 – Study: Diagnosed vs potentially undiagnosed autistic women
19:30 – Masking and hiding traits
22:45 – Why do autistic people mask?
24:40 – Study: First impressions of autistic women and men
27:29 – Effects of masking on mental health (personal flowchart)
30:05 – Why masking has this effect
34:23 – Clinician bias
37:28 – A hidden population
38:50 – Borderline Personality Disorder
41:38 – What needs to change?
45:10 – Closing, thanks, and Q & A

Belcher provides terminology and underscores identity-first language (autistic person(s)) (3:36). She uses the terms ‘male’ and ‘female’ because the majority of available research uses this binary lens. However, she notes that many autistic people do not identify with these labels. The speaker outlines key content (5:38) and notes that these topics have been discussed anecdotally for decades. However, she states that today, we don’t deal with anecdotes; it’s time for real numbers and research.

What we know about autistic females:

Autism has historically been considered a male disease, and consequently, the voices of women are largely absent from the research literature (7:38). Due to this imbalance in literature and, subsequently, in our foundational understanding of autism, an accurate description of autistic females does not exist (6:00). 

“From the beginning, we have not included women in the research or built our systems and conceptions of autism around their experiences.” 

The foundations of current diagnostic systems:

The speaker describes gender imbalances in the original description of autism and the validation of the Autism Quotient (AQ), the primary diagnostic screening tool in the UK (8:54). She outlines recent studies that revealed the AQ does not measure identical traits in males and females (9:48) and that the ADOS-2, a golden standard assessment, shows signs of significant gender bias (11:11). Therefore, Belcher states the very foundations of current diagnostic systems innately lack the female perspective.

The female phenotype theory:

The Female Phenotype Theory asserts that autistic males and females express autistic traits differently (13:20). Belcher briefs findings that support this theory and concludes that autistic females present as much more social than their male counterparts, which contrasts the idea of autism as a “social disorder” (15:25) and supports the gender biases revealed in the AQ and ADOS-2. 

To determine if there is a female phenotype, researchers investigated 243 diagnosed autistic women and 767 potentially undiagnosed women (PUW), hypothesizing that PUW would present as more exaggerated in these social areas (missed by assessments) (17:30). PUW scored significantly higher on empathy and general functioning measures than diagnosed women. This suggests, Belcher states, that social abilities may be an aspect of the different autism phenotypes. This challenges the idea that autistic people lack empathy and always have a talent for systemizing things (18:20). 

Masking and mental health

Masking is when autistic individuals hide or compensate for their autistic traits to appear more “normal” and fit in with others (19:30). The speaker describes a study assessing differences in first impressions of autistic men and women in a group of people who didn’t know their diagnoses (24:40). Results showed that autistic females rated better than males, that self-reported masking was not related to impressions, and that better first impressions are related to age at diagnosis. Belcher posits that these findings suggest some unconscious physical presentation of autism that affects the age of diagnosis and that non-autistic people pick up on these behaviors (25:40). 

Masking significantly predicts suicidal behaviors in autistic individuals and positively correlates with depression and anxiety. Belcher describes how relentless self-monitoring (conscious or not) and adapting to social situations with different people all day is exhausting and leaves little time for self-expression or care (30:05). Therefore, Belcher insists, 

“We need to minimize and move the onus of fitting in from autistic people masking toward non-autistic people learning to accept autistic people as they are. Consequences are severe if this is not the case… masking natural behaviors and traits denies expression of our true selves and identity.”

Misdiagnosis

Atypical autism presentations (not reported in the research or clinical knowledge) often lead to increased mental health issues and, subsequently, a diagnosis of other psychiatric conditions instead of autism (32:48). In fact, the speaker explains, autistic women often receive their diagnosis as the last in a series of mental health conditions, which is not the case for men (37:28). Borderline Personality Disorder (BPD) (aka emotion regulation disorder) is of particular concern for autistic women as the symptomology significantly overlaps with autism. Belcher describes a study that found 15% of patients attending a clinic for BPD fulfilled the criteria for autism (38:50). Such symptom overlap, coupled with the fact that BPD more often occurs in females, has created a clinical bias toward diagnosing BPD, leaving these individuals without the help and support they need (39:40). 

What needs to change:

To successfully support autistic women moving forward, Belcher says that clinicians need to have more awareness of different autism presentations and how the current tools may miss some cases or look like other conditions (41:38). Similarly, research must address the intersectionality among autistic adults. And finally, as a society, we need to help autistic people reduce the need to mask (42:55). Belcher gives thanks and acknowledgments before opening the question and answer session (45:10).  

Kaustubh Supekar, Ph.D., examines recent findings about gender/sex differences in autism phenotypes and brain organization. He highlights the underrepresentation of females in autism and underscores the need for a large-scale science approach. The speaker details contemporary research methods and outcomes which revealed gender differences in autism symptom presentation and structural and functional brain organization. Supekar provides study implications, discusses limitations, and outlines future research, diagnosis, and treatment priorities.

Learn more about our speaker Kaustubh Supekar, Ph.D. HERE
Take the knowledge quiz for this webinar HERE

In this webinar:

1:00 – Autism and gender heterogeneity
3:45 – Why are there fewer females with autism?
5:23 – Questions of interest and implications
7:15 – Why we know so little
9:40 – Large-scale science approach
12:40 – Question 1
14:00 – Findings and replication studies
17:25 – Study: Co-occurring conditions
19:10 – Age and gendered socio-ecological effects
19:53 – Interim summary
20:27 – Question 2
23:33 – Findings
25:10 – Study: Correlation of symptom presentation and brain structure
27:04 – Interim summary
29:30 – Question 3
32:00 – Clinical vs functional MRI
36:52 – Findings
37:25 – Major finding: Visual-spatial attention systems
38:15 – Robustness and specificity to autism
40:30 – Study: Functional organization patterns associated with RRB
42:02 – Interim summary
44:40 – Overall summary
46:53 – Limitations and priorities for future research
49:35 – Acknowledgments and Q & A

Autism is a highly heterogeneous neurodevelopmental disorder (1:00). Supekar discusses the skewed gender ratio of women to men (ratio of 1 to 4) in autism diagnoses and asserts that this lack of female representation is a key source of heterogeneity in autism symptom presentation, treatments, and research (2:20). He stresses the historical consistency of the sex/gender bias (7:15) and discusses why we know so little about behavioral symptoms and brain signatures of females with autism (4:00). Supekar presents the unanswered question of why there are fewer females with autism as a fundamental building block for the future of autism research and treatments (3:45). 

The speaker describes the large-scale science approach, which collects publicly available data from multiple studies, sites, languages, populations, and investigators (9:40). Such datasets provide large sample sizes, robust and replicable findings, and population variance (10:15). Supekar uses the large-scale science approach to address three research questions (12:04): 

1. What are the behavioral/symptom presentations of autism in females, and how do they differ from those in males (12:40)?

Supekar and his colleagues compared female and male clinical data (13:00) and found that girls with autism exhibit less severe restricted/repetitive behavior (RRB) than autistic boys (14:00). These findings have been replicated in multiple large-scale studies (15:20). The presenter outlines subsequent research on co-occurring conditions (17:25), which revealed a lower prevalence of ADHD and a higher prevalence of epilepsy in autistic females compared to males (18:03). He also describes evidence suggesting an influence of age and gendered socio-ecological contexts on symptom presentation in autistic females (19:10). Supekar states that these findings show significantly different phenotypes between autistic males and females where the female presentation is more nuanced (19:53). 

2. What is the structural organization of autistic brains in females, and how do they differ from those in males (20:27)? 

Researchers applied multivariate pattern analysis (MVPA) (22:18) to clinical and structural MRI data to assess gray matter volume maps. Their findings revealed that structural brain organization in females with autism is significantly different from that of autistic males, especially in brain regions belonging to the motor, language, and visual-motor systems (23:33). Supekar’s team subsequently correlated those brain regions with clinical scores and found a relationship between RRB domains and gray matter volume in girls with autism (25:10). The speaker suggests these results reveal gender discrepancies in autistic structural brain organization that are associated with significantly different sex/gender phenotypes (27:04). 

3. What is the functional organization of autistic brains in females, and how do they differ from those in males (29:30)?

Supekar and his colleagues used deep learning neural networks (33:16) to assess differences in clinical and functional MRIs in multiple brain regions (32:00). Despite the heterogeneity of the dataset, the model was consistently (86%) accurate in differentiating males and females with autism (36:28). Further, this study revealed sex/gender differences in brain systems associated with visual-spatial attention in autistic individuals (37:25). Such findings had never been recorded in autism literature before and have since been replicated in a fully-independent cohort (38:15). 

Brain regions showing differences were subsequently correlated with clinical scores, which revealed that regions belonging to motor systems predicted the severity of RRB in autistic females (40:30) but not in autistic males. Supekar asserts that these findings suggest the presence of domain-specific effects associated with RRB in females and some level of female protective effect (5:54) in those brain regions (41:35).

Supekar summarizes the research findings (44:40), noting that gender differences in autistic structural and functional brain organization significantly differed from normative sex differences (24:16; 39:20). He lists the implications of their results, including the need for sex-specific diagnostic instruments and treatments. The presenter outlines priorities for future research (46:53) before the question and answer session (50:12). 

Gregory Wallace, Ph.D., discusses eating-related behaviors in autism. He examines potential drivers of food neophobia and presents novel studies on the cognitive/behavioral correlates of eating in the absence of hunger (EAH). Wallace defines selective overeating as a new subtype of autism and details recent studies on taste perception and cortical taste pathways in ASD compared to typically developing groups. The presenter highlights limitations to current research and the need for longitudinal studies. Wallace closes with a Q&A discussing picky eating, GI difficulties, ASD and anorexia, and more.

The presenter’s slides are online HERE (English)
Learn more about our speaker Gregory Wallace, Ph.D. HERE
Take the knowledge quiz for this webinar HERE

A Spanish translation of this webinar will be available at a later date.

In this webinar: 

2:50 – Why study eating in ASD?
4:00 – Nutritional intake and focus on exercise
5:00 – Appetitive traits
5:40 – Food neophobia and “picky” eating is autism
8:15 – Studies: Food neophobia in ASD during childhood & FN in adolescents and adults with autism
9:18 – Study: Possible underpinnings of food selectivity
11:40 – Clinical significance and ARFID
12:38 – Summary of findings
14:10 – Eating in the absence of hunger in autism
15:00 – Study: Cognitive/behavioral correlates of EAH in ASD
17:55 – Study: Relationship between EAH and BMI in children with ASD
21:18 – Summary of findings
25:56 – Selective overeating in autism – a new subtype & study
28:50 – Study – Infrequency of food type consumption by eating subtype in children with ASD
29:53 – Neural correlates of eating-related behaviors in ASD
31:13 – Study: Taste perception in autism
33:37 – Cortical taste pathway explanation
37:02 – Study: fMRI self-report and gustatory mapping
41:24 – Summary of findings
42:50 – Presentation summary, study limitations, and links to more information
45:16 – Q & A

Suboptimal health outcomes are common in individuals with autism. Studies have found an increased risk for obesity, high cholesterol, hypertension, and diabetes in individuals with ASD compared to the general population (2:50). Wallace discusses diminished nutritional intake (4:00), hyperfocus on exercise (4:10), and appetitive traits as contributors to poor health outcomes. Food neophobia (FN), or a fear of trying new foods, is a common and seemingly adaptive appetitive trait of early eating that generally diminishes across child development (5:40). However, FN and other selective eating symptoms often persist into adulthood in autistic individuals and interfere with everyday function (7:20). 

Wallace examines sensory processing differences and behavioral/cognitive inflexibility as potential drivers of persistent selective eating in autism (9:18). He presents studies on the possible causes of food selectivity (9:50) and the clinical significance of Avoidant Restrictive Food Intake Disorder (ARFID) in autism (11:40). Other selective eating symptoms like eating in the absence of hunger (EAH) are scarcely studied in ASD (14:10). The speaker outlines two new studies that assess the relationship between EAH and 1) cognitive/behavioral correlates in ASD (15:00) and 2) body mass index (BMI) (17:55). Findings reveal that EAH is positively associated with behavioral inflexibility and BMI and that EAH is more prevalent in individuals with ASD than the general population (21:18).  

The speaker defines selective overeating (a new autism subtype) as the co-occurrence of picky eating and overeating (25:56). A novel study using parent ratings of autistic versus typically developing children found a greater number of children with ASD linked to selective eating and selective overeating. Further, Wallace explains, autistic children with EAH had significantly higher rates of selective eating than children without EAH (26:00). Combining these findings with those of the first two studies, Wallace asserts that increased behavioral inflexibility is most elevated for individuals who engage in selective overeating (28:50). 

Individuals with autism have divergent sensory processing experiences across all sensory systems. Therefore, Wallace states, taste perception/processing is a prime candidate for assessing neural correlates related to eating behaviors (30:20). Multiple studies suggest that while individuals with ASD can perceive taste, they struggle with taste identification or sensory integration (31:13). The speaker defines sensory integration difficulties as a cortical issue and briefly describes the cortical taste pathway (33:37) and using functional magnetic resonance imaging (fMRI) to assess brain blood flow in response to stimuli (34:33). Wallace outlines a 2018 study using gustatory mapping (fMRI) (37:45) and self-reports (37:02) to assess (35:50) response to tastants (taste samples) in the gustatory cortex and their relation to self-reported taste reactivity in autism. 

Researchers found no differences in neural response to tastants between ASD and typically developing age-matched groups (39:15). They also found no association between self-rated taste reactivity and brain response to sweet tastants in the neurotypical group. However, autistic individuals who self-rated as highly taste-reactive showed a strong positive relationship with gustatory response to the sweet tastants relative to the neutral flavor (40:13). Wallace explains that although there is no evidence of overall atypical gustatory cortical function in ASD, findings suggest that individual differences in self-rated taste reactivity modulate activity in the gustatory cortex. The speaker posits that these findings also suggest atypical brain functions for individuals with autism and food selectivity that could impact BMI through diet variation (41:24). 

Wallace summarizes his presentation, noting that more work is needed to establish longitudinal relationships between eating-related behaviors, their causes, and their outcomes. He touches on the need for more interventions for food-related behaviors to improve physical health and overall quality of life for individuals with autism (42:50). Wallace discusses the limitations of the presented studies (43:50) and provides links to more information (44:50) before the question and answer session (45:16). 

Dr. Wenn Lawson discusses “nothing about us without us” and capacity building to enable the benefits of participatory research co-production. He differentiates traditional, participatory, and co-production research methodologies and recounts his experiences in conventional autism research studies. Lawson shares videos about co-production within research and society and considers the necessary steps to creating a collaborative and inclusive atmosphere. The presenter underscores that, as with any team, co-production projects require diverse communication pathways and a safe and comfortable environment for each person. Lawson asserts that researchers must evolve into co-facilitators as investigation methods move away from classical hierarchical structures. He provides necessary considerations for creating a co-production project before the Q&A.

Take the knowledge quiz for this presentation HERE

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

In this webinar: 

0:00 – World Autism Organization Introduction
3:25 – ARI Introduction
5:10 – Australian Autism Cooperative Research Center (CRC)
6:08 – Nothing about us without us
7:01 – Traditional methodology
9:02 – Participatory methodology
10:20 – Co-researching together
11:30 – Informative video: What is co-production?
14:44 – What Co-production isn’t
16:20 – Partnerships
18:05 – CRC co-production studies
21:31 – Process of autistic and non-autistic researchers coming together
25:15 – Who are autistic researchers?
26:56 – Communication
30:23 – Questions for researchers and institutions
32:11 – Informative video: Participatory vs. Co-production
35:03 – How to make co-produced researcher
37:20 – Remaining questions and classical hierarchies
40:10 – Q & A

What is co-researching/co-production?

Dr. Lawson introduces co-production as the absolute foundation of autism research (5:10). Co-production, he continues, exemplifies the saying “nothing about us without us” as it seeks to bring together autistic people and researchers in an equal exchange of ideas and investigative thought (6:08). The speaker defines traditional research methods where one researcher or team collects data from multiple subjects, analyzes said data, and informs the literature discussion on that topic (7:01). He recalls his own experiences as a subject in autism research studies, highlighting that results were rarely shared with him (8:04) and how he was paid in flowers instead of dollars, unlike non-autistic researchers (28:25). Participatory research methods, Lawson continues, include focus groups, participatory inquiry, and multi-stakeholder engagement (9:02). While this ensures that autistic voices are recorded and analyzed, such methods do not account for disparities in points of view or defined measurements between autistic individuals and researchers (9:50). 

Co-production/co-researching is a specific kind of participatory research where participants have control over a project’s agenda, process, questions, and actions. Any one person or group does not dominate such projects. Instead, every aspect of the investigation, including research topics, methodologies, data collection and analysis, and action item implementation, are done together – “It’s all a joint affair where no one person has power over any other” (10:20). Lawson provides a short video/pictorial explanation of co-production in the context of public services (11:30). The “principle that services should be co-owned by the state and citizens and that all people have something of value to contribute” is the foundation of this idea (12:40). These concepts apply to the co-production of public services as well as holistic and inclusive research methods. Within this mindset, the first question an organization (research or otherwise) must ask is no longer, “What do they (citizens/public) need from us?” but, “What can everyone give, and how can we all work together?” (14:44). 

Co-production research and what it entails 

The speaker outlines what co-production is not (15:00) and details recent co-research projects he has worked on, where individuals who shared their stories also participated in project design and carried out data collection and analysis (17:00). Lawson touches on the variety of needs and accommodation present in a group of autistic and non-autistic people and underscores the need for equity (vs. equality) (18:05). He introduces the Australian Autism Cooperative Research Center (CRC) and their academy which brings autistic adults together for three (3) days to learn the basic principles of research (i.e., terminology, methods, ideas, practice, dissemination, etc.). The speaker details the experiences of one cohort that attended the CRC Academy and created a visual dictionary of research terminology (19:45). During the academy stay, autistic adults and researchers were brought together on neutral turf for one day. Although this brought up the damage done to autistic people in previous research, where they felt used and hurt, the group was able to debrief their histories and create a new sense of meaning and relief in collaborative research (21:35). Lawson recalls that some non-autistic researchers were also scared to meet autistic people (perhaps scared to meet them as equals). 

Those present were separated randomly into four (4) groups, each with one researcher. The researchers were then allowed to share their thoughts about autism on pieces of paper, and those were ranked by the group (22:40). This was a very telling exercise, Lawson continues, because “until you know how you see and feel about autism yourself, working in research with autistic people is going to be a challenge because you may not have those positive attitudes that we need to be bringing in.” (23:15). Following this exercise, autistic individuals discussed what they feared would negatively impact their research. This provided a practical understanding of what each individual needed to perform best (i.e., need to read ahead, no video, just audio, sensory support, thinking time, etc.). Given such open discussions, some non-autistic researchers could state that some of those things also happen to them. Still, they had never had an opportunity to share such preferences with a team (23:30). Lawson highlights that, in reality, all teams need to work these things out. Accommodation needs vary significantly from person to person, which is true for any team (26:00). 

Accommodations, communication, and inclusivity 

The speaker notes that autistic researchers come in all shapes and sizes and details how the academy considers individual needs to create the most comfortable circumstances for the whole team. This translates into built-in breaks and thinking time in meetings and various communication devices and options, among other things. The needs of autistic researchers must be accommodated as they bring enriching perspectives, authenticity, and credibility to research in ways not available if they are included (25:15). Lawson highlights communication as a primary avenue of inclusivity and asserts the need to double-check and put into practice various forms of communication to accommodate an entire team (26:56). He discusses his experiences with co-production (28:25) and provides questions for researchers and institutions to ask themselves as they move toward a more accepting and inclusive future. He states that actions speak louder than words and urges viewers to consider what meaningful and inclusive partnerships with autistic people mean to them (30:23). 

Lawson presents another video on the differences between co-production and participation (32:11), where participation only sometimes translates to shared power and collaboration. Co-production, the video states, takes participation further as it involves everyone concerned with the subject in an equal partnership from start to finish. This is a considerable shift from traditional research methods and is challenging to achieve. However, it can be done, and so is something that researchers and institutions should aspire to accomplish (34:01). 

To realize co-production research, Lawson says, researchers and institutions must consider the following (35:03): 

• People: name everyone involved in the project
• Skills: who brings what to the table
• Environment: safe and comfortable for each person
• Communication: diverse communication devices and pathways for each need
• Continuity: everyone is always in this project together
• Community: in such an inclusive and understanding environment, communities innately form

Co-facilitators and the end of classical hierarchies 

Lawson asserts that collaborative co-production requires users (participants) to be experts in their own circumstances and capable of making decisions. Simultaneously, professionals must transition from being “fixers” to “facilitators” (36:36). He touches on remaining questions about co-produced projects (37:20) and recounts classical hierarchical research methods where participants had no power and shared themselves and their stories without any sense of connection to the studies (38:20). In the case of autism research, the speaker continues, it must be, “nothing about me without me” and autistic people need to be wholly involved from A to Z. Such inclusive and collaborative methodologies are already making an incredible difference in research in Australia and the UK. Lawson underscores the need to move away from classical hierarchical structures and reasserts that whatever conditions exist within a team must be accommodated (39:12). During the question and answer session (40:10), the speaker discusses ways to support higher needs individuals in co-production studies, recommendations for participatory research designs, what a coordinator(s) looks like in such collaborative and equitable settings (43:05), how to include non-verbal individuals in co-production (47:20), alternative forms of communication (50:00), informed consent (55:58), diversity limitations innate to such studies (58:05), and more.