Gray Atherton, Ph.D., details the socialization of the female gender experience and how that plays into autism gender biases. The speaker discusses the experiences of autistic women, highlighting that gender is a critical barrier to diagnosis and care. Atherton details recent investigations into implicit gender biases in autism and their impact on medical care and autism understanding. She evidences contemporary shifts in the zeitgeist of gender and autism and provides suggestions for future research. The presenter offers sources and acknowledgments before the Q&A, where she discusses masking, minorities and misdiagnosis, videogaming and autism, and much more. 

In this webinar:

1:00 – Agenda and introduction
4:40 – Gendered development & autism descriptions
8:00 – Female protective effect
10:00 – Male brain theory
12:35 – Gender and autism
16:20 – Masking
18:50 – Study 1: Age of diagnosis and quality of life
26:10 – Effects of late diagnosis
30:00 – Gender biases and a new ratio
35:12 – Study 2: Implicit gender biases against female autism
40:11 – Findings
42:40 – Study 3: The zeitgeist of gender and autism
44:50 – Summary and future research
48:08 – Q&A

Female gender experiences

Atherton discusses the construction and socialization of the female gender experience, underscoring observed differences in toys, colors, expectations, and language used with female versus male children (2:15). She explains that females show more relational aggression (indirect) compared to males by age four (4:40) and tend to consider hierarchies and reputation in social interactions and communication from a very young age (6:15). These differences, the speaker continues, result, in part, from contrasting developmental pressures and environments between females and males. 

Gender and autism

Historical descriptions of autism are skewed toward the male presentation due to classic gender biases (6:40). Atherton outlines two prominent hypotheses that aim to explain observed gender differences in autism: the Female Protective Effect (8:00) and the Male Brain Theory (10:10). While these theories have been widely investigated, contemporary understandings of gender and autism reveal them to be limited in scope and understanding. 

Atherton cites research showing higher rates of gender diversity in autism, where transgender and gender-diverse people are three to four times more likely to be autistic than cisgender people (12:35). She discusses masking (16:20), or the process of copying other people and learning how to socialize, and how repetitive behaviors and other signs of autism can be easily mistaken for the expected “nice” “quiet” or “organized” qualities of girls and women (13:35). 

Age of diagnosis and quality of life

The speaker details a recent investigation into the effect that age at autism diagnosis has on an individual’s quality of life (QoL) (18:50). The study found that women are significantly more likely to be diagnosed in adulthood compared to men and that women actually reported higher thresholds of autistic traits, but were still missed by practitioners (21:13). QoL scores were negatively associated with age of diagnosis and masking. In a subsequent interpretive phenomenological analysis of lived autistic experiences, participants reported that their gender kept them from receiving a diagnosis – that they would have received a diagnosis much younger if they were male (22:16). These findings suggest that women do have autism at least as frequently as men and that women are primarily underdiagnosed in adolescence, which leads to lower overall QoL (25:05).

A study by Rodgaard et al., 2021 found that women who received a late diagnosis were misdiagnosed at least once with depression, anxiety, sleep issues, etc. (28:35). Atherton underscores that without early diagnosis and proper medical care, individuals are more likely to develop co-occurring conditions. In fact, 26% of late-diagnosed women have co-occurring conditions compared to 13% of late-diagnosed males and 3% of the general population (26:10). 

Implicit gender biases

The presenter outlines a study by Burrow et al., 2022 where researchers conducted direct assessments of autism symptoms at six to nine (6-9), twelve to fifteen (12-15), twenty-four (24), and thirty-six to sixty months (36-60) (30:00). Data revealed a 1:1 gender ratio of male/female children with “high concern” for autism – a stark contrast to the historically accepted 4:1 ratio. Clinician notes often referenced ‘monitoring’ girls over time but not needing a diagnosis in the same way as the boys did (33:00). These findings, Atherton asserts, suggest that although there is no biological bias, there seems to be different symptoms in females, perhaps as a result of female socialization, and subsequent bias in autism understandings and diagnosis.

 To determine whether there are implicit biases held against female autism, Atherton and her team paired vignettes of autistic descriptors with male and female names and asked participants to say how autistic each vignette seemed (35:12). She explains that implicit biases may never be cognizantly acted upon, but that they still affect the way we understand and respond to information (38:15). Results from the study showed that participants were slower to respond and made more mistakes when autistic descriptors were paired with female names compared to male names. Item-by-item differences were also recorded, where words that were explicitly autistic were viewed as male, and those that were the opposite of autistic were considered female (40:11). The speaker asserts these findings show implicit biases associated with females being autistic. 

Conceptualizing autism

To properly care for autistic individuals, it is critical to understand the zeitgeist or cultural climate around autism and gender. To test this, the speaker collected photos that represented autism from 163 people. Many participants sent pictures of females and wrote about the struggles that autistic women face. Many participants also noted that we need to reimagine autism in accordance with gender (42:40). 

The speaker summarizes her presentation, highlighting the difficulties in diagnosis and care faced by autistic females, that women have the same amount or more autistic traits compared to men, that there are implicit biases against autism as a female experience, and that the cultural zeitgeist of autism and gender is changing according to the unique struggles and voices of autistic females (44:50). Atherton provides signup information for individuals interested in participating in future research projects about female autism trait presentation, gender diversity in autism, and adult experiences of neurodiverse people, specific to improving QoL (45:50). She provides references and thanks before the Q&A session (48:08). 

Peter Vermeulen, Ph.D., considers a positive approach to psychoeducation for autistic individuals. He draws on over 25 years of experience to illustrate contemporary changes in autism intervention focus and discourse. The speaker outlines critical characteristics of autism psychoeducation and underscores the need to create measurements and questionnaires based on well-being and happiness. He outlines a new psychoeducation program for autism, focusing on skill development, self-understanding, and quality of life. Vermeulen outlines critical understandings to inform positive psychoeducation before the Q&A session. 

Printable handouts (.pdf) are online HERE

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

In this webinar

0:00 – 6:20 – Introductions
6:40 – Psychoeducation and autism
9:27 – Self-knowledge in autism
12:00 – Shifting the focus of psychoeducation
14:50 – Pychoeducation must be meaningful and functional
18:15 – Pychoeducation must be positive
20:15 – Psychoeducation must be fun and interactive
23:28 – Pschoeducation must put autism into context
28:25 – Psychoeducation must focus on wellbeing
35:30 – Four pillars of psychoeducation for autism
39:00 – H.A.P.P.Y.
41:50 – Q&A

Introduction

Vermeulen defines psychoeducation as the “practice of explaining a diagnosis to people who have the diagnosis” and notes that this is a relatively new area of study within autism (6:40). He draws on past experiences to illustrate how the focus of psychoeducation has shifted over the last quarter century, highlighting that it is autistic people themselves who are entitled to learn about autism first (7:35). The speaker cites a study which found that autistic children “know” they are different and have some notion of what their differences and difficulties are. However, he continues, many have difficulty understanding and developing a nuanced and coherent concept of self (10:34). Vermeulen emphasizes the empowering potential of well-constructed psychoeducation. 

Characteristics of psychoeducation

The presenter describes his first published interactive psychoeducation program for autism, entitled, I Am Special (12:00). In the 25 years since its publication, Vermeulen continues, he realized that the focus of autism psychoeducation needed to shift from a clinical explanation and deficit-centered language to include information that autistic people actually need in a way that is easy for them to understand and empowers them to know themselves (13:55). He discusses four critical aspects of successful autism psychoeducation: 

Make it meaningful and functional

The word functional, in this sense, means that a given program is administered in a way that participants can relate to the information and, therefore, apply it to their lives almost immediately (14:50). He underscores that abstract and general information does not teach coping skills and that we must use language that reinforces self-understanding and builds navigating/coping skills (16:00). He provides this example: 

Instead of: You have difficulty with these kinds of situations.

We say: These kinds of situations can be difficult for you because of the sensory environment and… These are some things you can try that may help with …”

Make it positive

Vermeulen asserts the need to do away with the deficit perspective/discourse and focus on the positive aspects of autism. Individuals need to understand the benefits of their differences and their strengths. There are several positive autistic role models in the media. However, he continues, referring to things an individual can realistically achieve is also essential. Most people aren’t geniuses, so personal goals should be attainable – make it positive, but be honest (18:15). 

Make it fun and interactive

The presenter states that activities in autism psychoeducation programs should be interactive and encourage participants to do something. In his first publication, I Am Special, the activities were simple worksheets like those children receive in school, which can be boring and tedious (20:15). Vermeulen asserts the benefits of including activities that involve the surrounding environments. For example, he continues, have someone trace their body on a large piece of paper and then measure the lengths of each part (22:14).

Put autism into context

Vermeulen reminds viewers that autism is not the only title autistic people wear; it is not their sole defining characteristic. He urges families and practitioners not to make autism bigger than it is. This diagnosis is only part of each person, and psychoeducation programs must be sure to put this in context (23:28). The speaker recounts an interaction with someone who hated the I Am Special course because he didn’t want to be special; he wanted to be just like everyone else (25:00). 

Focus on wellbeing

He touches on the concept of neuroharmony and the need to focus on our commonalities instead of our differences (26:15). Maslow’s Hierarchy of Needs says that we all have physiological needs and safety needs, we all want to belong, have self-esteem, and be fulfilled (30:00). Vermeulen asserts that in terms of behavior, mind, and necessities, no one person is so different from the next. 

A recent study on autism intervention goals found that most investigations used DSM-5 criteria or other behavioral characteristics as success measurements. Such measurements have no correlation with quality of life (QoL), age, IQ, or symptom severity (32:00). Another study found that parents and autistic children would like intervention goals to include things like happiness, self-esteem, and mental health management (33:00). The presenter asserts the need to develop questionnaires and intervention goals based on what makes autistic people happy, not about their difficulties or differences (34:30). He urges families and practitioners to shift focus from being “less autistic” to being “autistically happy.”

H.A.P.P.Y.

Vermeulen describes his most recent psychoeducation program as an autism-friendly plan for well-being. It encompasses the aspects outlined above and has adapted evidence-based well-being strategies for autistic individuals (35:30). Vermeulen has created four pillars to inform programs for happiness and well-being for autistic people (37:40):

1. Happiness is within reach of all people with autism, regardless of the nature and profile of their autism, their intellectual abilities, and their age
2. Evidence-based scientific findings should underpin a program for happiness and well-being
3. A program for happiness and well-being should make evidence-based well-being interventions autism friendly
4. A program should be individualized and should be what works for you. 

His new program, H.A.P.P.Y., uses ten evidence-based well-being strategies, including accepting and loving yourself, Good Feeling toolbox, flow activities, physical exercise, problem-focused and emotion-focused coping strategies, positive thinking, gratitude, kindness, and personal projects (learning something new) (39:00). Versions (online and physical) for children and young adults are available for individuals or groups. There is no fixed number of sessions. The speaker provides concrete examples for a Good Feeling Box and flow activities. He reiterates the need for psychoeducation programs to be more than a list of all the things an individual must do or learn (40:00). Vermeulen summarizes his presentation, underscoring the five critical aspects of psychoeducation (41:15) before the Q&A where he discusses how H.A.P.P.Y. could work for individuals with intellectual disabilities and seniors, how to find what autistic people prefer, and much more (41:50).