The field of autism research evolves as we learn more, from research findings, autistic individuals, and the broader autism community, write Rebecca Flower and Rachel Jellett, postdoctoral research fellows at Olga Tennison Autism Research Centre at La Trobe University in Australia.
THE SCOPE of autism research has broadened significantly in recent years to include topics relevant to adolescents and adults.
We present an overview of five areas gaining researchers’ attention in recent years.
The research presented below mostly relates to individuals with autism and no co-occurring intellectual disability.
We recognise this is an area of focus where more research is needed, and our team is advocating for, and pursuing research in this field, although it is not represented in this article.
Please also note that we have used a mixture of identity-first (e.g., ‘autistic person’) and person-first (e.g., ‘person with autism’) language, to reflect the diversity of preferences in the autism community.
For now, here are five areas in autism research to watch:
Neurodiversity and Participatory Research
The idea of neurodiversity is not new but has been gaining more attention recently. The essence of the term ‘neurodiversity’ is that “there is no single way for a brain to be normal,” as explained in a recently-published editorial by Simon Baron-Cohen, head of the Autism Research Centre in Cambridge (see here & here). Looking at autism from a neurodiversity perspective can help promote inclusion and reduce stigma. It means broadening our understanding to see how social systems can change to be more autism friendly, rather than focusing narrowly on the individual. Supermarket ‘quiet hours’ are a nice example of an environmental change that can have a positive impact for people on the autism spectrum.
How has autistic activism contributed? The neurodiversity movement is a social justice movement promoted by autistic autism rights advocates (see den Houting, 2019). Increasing use of words like Neurodiversity, Neurdivergent, Neurotype; hashtags such as #ActuallyAutistic, and a social media profile followed by Âû are indicators of some of the activism linked to the neurodiversity movement. People who are #ActuallyAutistic are finding more channels through which their voices can be heard, which contributes to changes in how we view and understand autism. By sharing their experiences, they give us the opportunity to learn more about what autism is like from the inside.
What is “participatory research” and why is it important? In a recent editorial, Liz Pellicano and her colleagues (2018) explained the importance of ‘participatory research’, which means including autistic individuals in each stage of the research process. Some different methods of participatory research include using advisory boards, co-developing projects, and removing barriers so autistic researchers can access opportunities to contribute. Using these methods makes it more likely that research will reflect the needs of the community, and that interpretations of research data are consistent with how the autism community would view the data. Want to know more? See here.
Autism in Girls and Women
You might have heard that for every female diagnosed with autism there are roughly three to four males (Fombonne, 2009; Loomes et al., 2017).
But this ratio changes when you consider the person’s language, cognitive abilities, and even their age. The ratio of males to females where there is a co-occurring intellectual disability has been reported at around 1.5:1 (Yeargin-Allsopp et al., 2003), for those without, around 10:1 (Fombonne, 2009), and by adulthood, about 1.8:1 (Rutherford et al., 2016). This pattern tells a two-part story. Firstly, biologically, autism might not affect males and females equally (Ecker et al., 2017). Secondly, autistic girls without co-occurring intellectual disability are being missed (Dworzynski et al., 2012), only to be diagnosed later if at all (Begeer et al., 2013; Loomes et al., 2017).
So, what does autism look like in girls and women? The pattern of behaviours seen in autistic girls and women is known as the ‘female autism phenotype’ (Kopp & Gillberg, 1992). Girls and women might be more inclined, better able, or are taught from a young age to mask their autism (Hull et al., 2019; Lai et al., 2015). They tend to desire friendships and develop strategies like watching and impersonating other girls (Tierney et al., 2016). They can be socially successful, though this becomes more difficult with age, as the complexity of the social world increases and the effort of masking (see section on Masking later in this article) comes at a cost to their wellbeing and sense of identity (Tierney et al., 2016). For these reasons, social difficulties can go unnoticed.
Some girls with autism will have a ‘special interest’. Although the intensity is similar to that of boys with autism, the special interest might not stand out as being unusual (e.g., animals, Disney, creative writing, Harry Potter, manga) and might be ‘gender typical’ (see Lawson, 2019, for a review). Girls might show preferences for routine and struggle with transitions; their rigidity can also present as strong opinions and can mean that they can be very determined. This tendency can make autistic girls wonderful advocates; Swedish teenage environmental activist Greta Thunberg is a testament to this. Like boys, some girls with autism show differences in their sensory processing; for example, they can be sensitive to light, sounds, the feeling of some fabrics, and self- grooming (e.g., having their hair brushed).
Why are girls missed? Girls are less likely to be referred for assessment (Rutherford et al., 2016), and referred girls are less likely to get a diagnosis of autism (Duvekot et al., 2017). Girls might cope with strong emotions by turning them inward (internalising, anxiety, depression) rather than outward (externalising, challenging behaviour), meaning they can fly under the radar. The diagnostic tools we use for autism have a male bias and are less effective for identifying females (Ratto et al., 2018). Diagnosticians who are unfamiliar with the female autism phenotype might carry this male bias, looking for the signs of autism they’re used to seeing in males; girls don’t necessarily fit the stereotype. As part of an assessment process, a range of information is gathered from clinical observations, self-, parent-, and teacher-report. Girls can seem different in the clinic, at school, and at home, which complicates the assessment process. For girls and women, there can be a marked difference between how they seem on the outside, and what they’re experiencing internally.
What should health professionals look for? A recent paper sums up the opinions of clinical psychologists experienced in assessing autism in girls with the title “exactly the same but completely different” (Muggleton, McMahon, & Johnston, 2019). By interviewing the psychologists, the researchers found that while the psychologists believed the underlying characteristics of autism seemed the same across girls and boys, psychologists had noticed the way these characteristics presented seemed different. As a clinical psychologist, I (RJ) have personally found that when assessing girls and women, it can be important to look beyond surface social skills and toward deeper social understanding. Look for discrepancies between home and school; are they socially successful but then struggling at home from the effort? Consider a combination of age, cognitive/language ability, and anxiety, as these can help to decide whether social success is coming to them naturally or is effortful compensation. For young girls, investigate their imaginative play skills by changing the idea or script and seeing if they can follow and adapt flexibly. Drop social hints about yourself and see if they pick up on the cue to ask you a question. For women, listen to their descriptions of how they learned social skills and the difficulties they encountered along the way. Look carefully at co-occurring sleep, digestive issues, mood, and anxiety. When assessing for autism, it’s not just about looking, it’s about listening. People’s stories and experiences (including their own and those of parents and partners) can be as important as the behaviours observed in the clinic.
What does diagnosis mean for girls? An accurate autism diagnosis is important for girls and women. Receiving a diagnosis can give girls and women understanding, support, community, and a sense of identity, and can be liberating (Frith, 2013). Many women have received an incorrect diagnosis (Bargiela et al., 2016) on their way to identifying their autism, which can be confusing and lead to inappropriate or even harmful treatments. Increased self-awareness and understanding from others can help prevent some of the secondary difficulties (e.g., mental health concerns) associated with a lack of understanding and support.
What about males and non-binary people? Gender is more complicated than a simple male-female binary, and people with autism show more varied gender presentations (Strang et al., 2014). More research is needed to understand the presentation of autism across the gender spectrum and how autism presents in those who are gender diverse. Of course, there are also individual differences in how autism presents; the points made above can also apply to boys with autism and may not be exclusive to girls (Hull et al., 2019). This is because “the way autism affects individuals is highly variable” (Gould, 2017, p. 704).
Masking, Camouflaging, and Compensating
Camouflaging, masking, blending in, compensating, impression management; we all do this to an extent. Imagine you’re invited to a work dinner with your colleagues. You get ready, thinking about what’s appropriate to wear, what to bring, and some topics to bring up (and avoid) if there are lulls in conversation. In autism, the stakes are higher, and the task is more difficult. When social skills do not come intuitively, getting through this event requires cognitive effort, concentration and learning, a bit like doing complex algebra on the fly.
How do these strategies differ? Camouflaging and compensating are two different processes. Camouflaging and masking refer to ‘hiding’ autistic traits to appear more neurotypical. This can include suppressing stimming (stimming, also known as self-stimulation, is the repetition of physical movements, sounds, words, or moving objects) or talking less than you’d like to about a favourite topic to try not to stand out. Compensatory strategies involve using intellect to find new ways to read and respond to social cues, so those with autism can get by in social situations (Livingston & Happé, 2017). Compensating can be superficial (e.g., laughing along with a joke) or more sophisticated (e.g., recalling similar past experiences and adapting learned responses to a new context). Cognitively, this might be similar to children with dyslexia finding a different way to learn to read (Frith, 2013).
What is the cost of compensation? A recent study found that people who engaged in compensating described it as an effortful process (Livingston, Shah, & Happé 2019). However, they explained that it gave them opportunities they might otherwise have missed. On the flip side, compensating seems to be a risk factor for mental health difficulties, and might even make it difficult to form a clear sense of self-identity. When asked whether it was worth it, many participants said that in hindsight it was, but imagine a world where there was enough awareness, acceptance, and valuing of autism that autistic people could fully participate in life without feeling compensating was required. What’s exciting about this area of research is that it suggests that there is more to autism than meets the eye (Gould, 2017). In the diagnostic process for autism, it is important to consider a combination of autism traits and characteristics, as well as the level of masking/compensation (Hull et al., 2019), the underlying cognitive processes (McPartland, 2019) and subjective experience (Parrish-Morris, 2019). Having a good understanding of all these aspects of autism will enhance the provision of supports and services for those on the spectrum.
Autistic people have a lower rate of employment than non-autistic people worldwide. While accurate and current data are difficult to collect, employment rates for autistic people in English-speaking countries are believed to be between 14% in the United States of America (Roux, Rast, Anderson, & Shattuck, 2017) and 32% in the United Kingdom (National Autistic Society, 2016). And when autistic people are employed, they are likely to be ‘under-employed’, working less hours than they desire, and employed in roles below their level of qualification (Baldwin, Costley, & Warren, 2014). In Australia, the best estimate for employment among individuals on the autism spectrum is only 28 per cent, which includes all employment – even if only a few hours a week, (Australian Bureau of Statistics, 2017). Unfortunately, we are not aware of any data that documents the employment rate of autistic people in New Zealand.
Why are employment rates low among autistic people? We know there are several barriers to meaningful employment for autistic people, and research is only beginning to investigate these. For example, the job interview is based on verbal and non-verbal communication, including communicating that you are the best person for the role and building rapport with interviewers. This can be a challenge for autistic people given different communication styles and unwritten rules involved in a job interview that change depending on context (e.g., there may be differences in an interview for an office-based role compared to an interview for a role in the hospitality industry). Further, studies exploring community knowledge and understanding of autism have found many people have limited understanding of autism, particularly regarding workplace abilities (e.g., Jones, Akram, Murphy, Myers, & Vickers, 2019). So, is there something specific about the traditional recruitment process that is creating barriers? How are autistic candidates being perceived at job interviews? Are there changes that employers can make to reduce barriers for autistic job seekers? These are questions our team at the Olga Tennison Autism Research Centre is working on answering.
Are things changing? Fortunately, there has been recent interest in several countries in the skills autistic employees can bring to the workforce, and acknowledgement that the traditional recruitment system is creating barriers for autistic job seekers. This movement seeks to create alternative pathways for autistic job seekers into employment by doing things like providing opportunities for job applicants to demonstrate work-related skills (e.g., Flower, Hedley, Spoor, & Dissanayake, 2019). While the movement has gained attention and is increasing, in most countries where these initiatives are occurring, the number of jobseekers far outweighs the number of opportunities. Further, many of these opportunities are in the information technology sector, and the movement hasn’t yet sufficiently expanded into other industries. Lastly, while many of these companies aim to share their experiences via events such as regular Autism@Work summits (see here) the majority of these programmes conduct data collection ‘in-house’, and thus limited objective information is available from which other companies, and researchers, can learn. So, while research has begun to target changes that employers can make (rather than putting the onus on autistic individuals to change) there is still a long way to go.
Increasingly researchers are conducting studies looking at mental health among autistic people. Recent findings have suggested that autistic adults are more likely to experience several mental health conditions than non-autistic adults. Many autistic self-advocates are speaking up about their experiences and encouraging researchers to do more work in this field.
What do we know about mental health for autistic adults? There is evidence that autistic people are more likely than non-autistic people to experience conditions such as generalised anxiety, obsessive compulsive disorder, bipolar disorder, and major depressive disorder, and that these conditions are common across the lifespan (Lai et al., 2019; Uljarevic et al., 2019).
However, here’s where things become a little tricky. The tools clinicians use to diagnose mental health conditions are often tools that have been designed for use among non-autistic people. This can lead to challenges, as the tools are written for a non-autistic client, and it is possible that autistic individuals may experience symptoms differently or understand questions being asked in a different way. For example, symptoms that are associated with anxiety among non-autistic people, may be a sign that the autistic individual is experiencing sensory over-stimulation rather than an anxiety disorder. It is also possible that clinicians unfamiliar with autism may misinterpret symptoms of autism as features of another clinical condition. Conversely, clinicians may ignore or overlook co-occurring conditions, assuming it is part of autism, an issue known as diagnostic overshadowing.
These challenges have prompted researchers to suggest a) mental health evaluations for autistic adults, b) diagnostic tools designed to identify mental health conditions among autistic people, and c) therapies designed specifically for autistic people (Lai et al., 2019; Uljarevic et al., 2019).
As discussed in this article, many people with autism have had to work hard to present in a more ‘neurotypical’ way to succeed in social environments like the workplace. However, this can come at a cost. It can lead to the under-identification of autism (especially in girls/women), workplace discrimination, and has an impact on mental health. This points to the stigma that continues to be experienced by autistic people. With increasing awareness and understanding, thanks in part to the neurodiversity movement, we are hopeful that things will change quickly, and autistic people will feel they can be themselves and embrace their positive autistic identity.
- Dr Rebecca Flower (BPsySc [Hons], PhD) is a Postdoctoral Research Fellow at the Olga Tennison Autism Research Centre at La Trobe University. She is passionate about the transition into adulthood and positive adult outcomes for autistic individuals, with a focus on employment.
- Dr Rachel Jellett (BA[Hons], DPsych[Clin]) is a Postdoctoral Research Fellow at the Olga Tennison Autism Research Centre, and a practicing Clinical Psychologist with an interest in autism. She is passionate about applying her experience as a Clinical Psychologist to autism research.
- The Olga Tennison Autism Research Centre (OTARC) is Australia’s first dedicated autism research centre and is located at La Trobe University in Melbourne, Australia. OTARC works with many international partners, and lead researcher in early detection, Dr Josephine Barbaro, recently trained New Zealand’s Plunket nurses. Other collaborations in New Zealand include Dr Simon Bury’s work with DXC Technology and Untapped Group.
- This article first appeared in Altogether Autism Journal Issue 3, 2019.
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