UNDERSTANDING SOCIAL BEHAVIOR IN AUTISM: A DIVERSE WORLD OF UNIQUE PEOPLE

Julia Parish-Morris, PhD

04/27/2022


People use language to tell others what they want and need. In autism, some kinds of social communication (like language, eye contact, and hand movements) can be challenging. The goal of my lab at the Center for Autism Research is to understand and support social success for autistic people, especially in the areas of speech and language.

How do researchers study people? One way is to break things down into what we see and what we hear. Technology like cameras and microphones, combined with computer programs, can find tiny patterns in the way people talk. Then, if something doesn’t go well in a conversation, the exact problem can be found and things can be changed so it goes more smoothly next time. In my lab, we try to study conversations that are as “real” as possible. Why? Because measuring autism in the real world is important for understanding how to help people get what they want, like having friends, getting a job, and maybe even getting married.

Speaking of the real world, the “real world” isn’t the same for everyone. The truth is, the world treats people differently based on how they look, how they talk, where they are from, and what they do – and this kind of treatment is often unfair. Sometimes people assume that a person doesn’t know very much because they are young, or think that a person isn’t educated because they speak with a certain accent. Studying autism means understanding that autistic people each have unique bodies, minds, and cultures. To study autism, it is important for researchers to work together with the autistic community and focus on respecting each person’s life experience. Seeing the unique strengths and challenges of each autistic individual allows researchers to do work that makes sense for the whole autistic community. Otherwise, we risk working on things that don’t matter for everyone, and we might create clinical tools that don’t meet everyone’s needs.

Understanding social behavior in autistic girls and women – a group that is often ignored – is a main research goal in our lab. The Centers for Disease Control (CDC) estimates that 1 girl is diagnosed with autism for every 4 boys1, and girls are often diagnosed late, diagnosed with something besides autism, or not diagnosed at all – even when they have similar autism symptoms to boys2,3. Why? Recent studies suggest that clinicians aren’t always “looking” for autism in girls, and since autistic girls behave differently than autistic boys in some ways, it might be harder to diagnose them. For example, studies from our lab show that strangers rate autistic girls as being socially better than matched autistic boys4, and autistic girls talk more about social topics5 and look more at faces6 than autistic boys. But this brings up another question: once we find autistic girls, how can we best support them?

Girls live in different social “worlds” than boys, especially during the teen years. In fact, research shows that most cultures have a wide range of social rules that people are supposed to follow, and these rules are often different for girls and boys. There are rules about feelings, including when and how much girls and boys should show their feelings7 and how often they should smile8. Autistic or not, girls and boys are taught these rules from birth. Thus, the fact that autism may look different in girls and boys does not mean that girls aren’t autistic. Instead, it means that autistic girls are not currently well-understood. This lack of understanding (driven by not enough research) leads to fewer referrals, missed or late diagnoses, services that don’t work exactly right for girls, and poorer long-term outcomes including higher rates of depression and suicide in autistic girls9. Autistic girls and other less-researched autistic subgroups deserve BETTER, which is why our lab is committed to understanding and supporting autistic people in all their beautiful complexity.

 

Word count: 645

References cited:

 

1.         Maenner, M. J. et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. 70, 20 (2021).

2.         Dworzynski, K., Ronald, A., Bolton, P. & Happé, F. How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? J. Am. Acad. Child Adolesc. Psychiatry 51, 788–797 (2012).

3.         Bargiela, S., Steward, R. & Mandy, W. The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. J. Autism Dev. Disord. 46, 3281–3294 (2016).

4.         Cola, M. L. et al. Sex differences in the first impressions made by girls and boys with autism. Mol. Autism 11, (2020).

5.         Cola, M. et al. Friend matters: sex differences in social language during autism diagnostic interviews. Mol. Autism 13, 5 (2022).

6.         Harrop, C. et al. Visual attention to faces in children with autism spectrum disorder: are there sex differences? Mol. Autism 10, (2019).

7.         L.R. Brody & Hall, J. A. Gender and emotion in context. in Handbook of emotions vol. 3 395–408 (2008).

8.         Briton, N. J. & Hall, J. A. Gender-based expectancies and observer judgments of smiling. J. Nonverbal Behav. 19, 49–65 (1995).

9.         South, M., Costa, A. P. & McMorris, C. Death by Suicide Among People With Autism: Beyond Zebrafish. JAMA Netw. Open 4, e2034018 (2021).