But, You Don't Look Autistic

Talks

Rhiana Heppenstall

1 talk

But, You Don't Look Autistic

by Rhiana Heppenstall

The video "But, You Don't Look Autistic" features speaker Rhiana Heppenstall at RubyConf AU 2023, emphasizing the diversity of experiences associated with autism. Heppenstall, who has a personal journey with autism and a background in psychology, seeks to illuminate the common misconceptions and stereotypes about autistic individuals, particularly in professional environments.

Key Points Discussed:

Understanding Autism: Heppenstall shares her background and motivation for understanding autism, stemming from her family's experiences.
Debunking Myths: She questions the stereotype encapsulated in the phrase "You don’t look autistic," prompting conversations about the varied manifestations of autism and the importance of recognizing that many individuals may be unaware of their diagnosis.
Stereotypes: The talk critiques media portrayals, such as those in films like "Rain Man," which depict autistic individuals as often socially inept or savants, failing to capture the full spectrum of autism.
Diagnosis and Symptoms: Heppenstall discusses how autism is diagnosed, noting the evolution of diagnostic criteria to a more nuanced understanding that includes a wide array of symptoms, such as sensory sensitivities and communication styles.
Strengths and Challenges: The speaker highlights the strengths of autistic individuals, including detail orientation and strong loyalty, while also exploring their challenges in social contexts and communication.
Workplace Accommodations: The discussion points out the higher unemployment rates among autistic individuals and the need for inclusive workplace practices, such as tailored onboarding processes and facilitating open communication.
Social Engagement: Heppenstall emphasizes that autistic individuals can engage socially, albeit in varying ways, and calls for workplaces to create environments that accommodate diverse social interaction styles.
Mental Health Considerations: Lastly, she warns against burnout and the exhaustion caused by masking one's true self, advocating for a workplace culture that embraces authenticity.

Conclusions:

Heppenstall concludes with a strong message about the necessity of fostering an inclusive environment that respects individual needs. She advocates for open communication and proactive accommodations, which can enhance workplace diversity and improve morale. By sharing her insights, she hopes to empower others to better understand and support both themselves and individuals on the autism spectrum.

The video serves as a call to action for workplaces to learn about and accommodate diverse communication styles and needs, ultimately leading to a more respectful and productive environment.

00:00:00.740 Have you ever worked with anyone who’s on the spectrum? I mean, maybe it’s a spectrum, right? There’s a breadth of experiences to be on.

00:00:05.680 People don’t look autistic, even if they are, and even if they were, they may not necessarily know due to late diagnoses. These are generally hard things to talk about, let alone in a professional context like a workplace.

00:00:18.720 Fortunately, our next speaker is well placed to give us an insight. She was diagnosed with autism 15 years ago and majored in psychology to learn more about it. Rhiana is a front-end developer focused on accessible UX and design. She has a background in educational psychology and made the move to programming ten years ago after attending a Rails and Stormfest.

00:00:38.100 She certainly doesn't look autistic, but can she pair? She says that the main consideration with pair programming and autism is navigating different communication styles. Autistic people tend to be very direct and may remain silent when processing information as opposed to the little 'ums' and 'uhs' that a neurotypical person might say while thinking.

00:01:09.060 We all have a bit of that spectrum in us. Now, to tell us more, please welcome Rhiana Heppenstall, with her talk "But, You Don't Look Autistic"!

00:01:27.659 Oh, thank you very much for that introduction. I’ve been really excited to speak at RubyConf the last few years. I’ve seen many wonderful neurodivergent talks about ADHD and dyslexia, and I thought, why not autism? This is something I have been learning about and researching for the last 20 years or so, ever since my youngest sibling was diagnosed with autism at the age of four when I was 16.

00:01:54.540 At that time, we had no idea what autism was or what it looked like. Nobody had any clear answers for us. This prompted my journey to university, where I became a lifelong learner about autism. Today, I will provide you with a nice introduction to autism, including how it’s diagnosed, some symptoms, and some of the myths and stereotypes associated with it.

00:02:21.540 Part of my talk will focus on debunking these myths and stereotypes. I named this talk "But, You Don’t Look Autistic" because this is a common phrase I hear when I tell people I’m autistic.

00:02:28.319 When I share my diagnosis, they often respond with, "But you don't look autistic." This statement, while often intended as a compliment, made me think: why don’t I look autistic? I started reflecting on what it means to look autistic.

00:02:43.320 As I pondered this, I came across a quote that resonated with me: "If you've met one person with autism, you've met one person with autism." It truly is a spectrum, and autistic individuals can present their traits in various ways.

00:03:04.080 It’s also important to note that many people may have autism but remain unaware of their diagnosis. Additionally, there are many co-diagnoses that can exist alongside autism, such as ADHD, Tourette's, and OCD.

00:03:31.620 In the media, we often see stereotypes about autism that can be harmful. My first exposure to autism in the media was through the film "Rain Man," which features an autistic savant. A savant is someone who has exceptional abilities in one area but may struggle in others.

00:04:01.319 Stereotypes suggest that autistic individuals can be excellent at math or other skills but have significant difficulties in social contexts. This portrayal often resolves around echoing phrases and repetitive movements, which are merely surface-level stereotypes.

00:04:31.680 We must also consider how these representations shape perceptions of autism. There’s a tendency in media representations to depict someone who is intellectually gifted yet struggles in social settings.

00:04:49.020 Historically, figures such as Einstein, Isaac Newton, and Mozart have been speculated to have had autism. Most notably, these historical narratives often focus on white men who were brilliant at specific things.

00:05:16.680 These types of stereotypes can be quite damaging. If an individual does not fit into the typical mold of what an autistic person looks like, it may cause them to feel that perhaps they do not belong and that they don’t have autism. This misunderstanding can create significant barriers in terms of getting diagnosed and obtaining treatment.

00:05:49.740 Being actually autistic can mean many things that diverge from the more common stereotypes. For instance, one prevalent myth is that autistic individuals lack empathy. This misconception persists despite the fact that autistic people do indeed have emotions and can feel empathy.

00:06:06.000 The difference lies in how they demonstrate that empathy within social interactions. Communication styles can vary greatly across neurodivergent individuals. It's crucial to understand that autistic individuals may exhibit empathy differently than neurotypical people.

00:06:45.600 Now let's delve into the actual symptoms of autism. In the past, diagnosing autism involved scoring a person against a 50-point checklist; you needed to obtain a specific score to be diagnosed.

00:07:05.520 Now, we have a more nuanced understanding of autism through tools like the Autistic Wheel, which illustrates a wide range of symptoms that can manifest in varying degrees.

00:07:23.160 For example, someone might have a strong fixation on a specific interest. For me, that interest happens to be autism itself. Others might be fixated on art, dinosaurs, or any other number of things.

00:07:55.680 There are also symptoms like noise sensitivity, light sensitivity, or food sensitivity. Many autistic people have restrictive diets related to their sensory sensitivities.

00:08:18.240 Moreover, you might see stimming behaviors, which are actions like fidgeting that help manage anxiety. Eye contact is another area that can present on a spectrum—some people excel at it while others struggle.

00:08:40.479 If all of this feels overwhelming, let me provide some comic relief: I am convinced that cats can exhibit autism-like traits as well. My cat and I have a strict routine and a specific diet. Just like autistic individuals, both my cat and I dislike when our routines get disrupted.

00:09:07.740 When we discuss the strengths and weaknesses associated with autism, we acknowledge that individuals often possess high attention to detail—this can be advantageous while working.

00:09:36.060 Additionally, autistic individuals may have issues interpreting figurative language, leading to misunderstandings in communication. In workplace settings, it’s essential to be precise and direct to mitigate any miscommunication.

00:10:08.760 Additionally, many autistic individuals exhibit strong loyalty and a strong sense of justice, making them excellent advocates for fairness.

00:10:35.460 However, autistic people may find it difficult to put themselves in someone else’s shoes, which can affect communication and social interactions.

00:10:59.220 When we speak about the causes of autism, the short answer is that we’re still not sure. Many studies have indicated a genetic component, as autism is highly heritable. Women, in particular, are often diagnosed later in life.

00:11:33.720 There’s also considerable research focusing on brain structures and possible differences in mirror neurons, which autistic individuals may struggle with. Other theories focus on in utero conditions and parent age.

00:12:02.640 It is critical to highlight that vaccination does not cause autism. This myth originated from a discredited study and has been debunked multiple times.

00:12:28.200 Another common myth is that all autistic individuals are savants or geniuses, which is misleading. While savantism is rare—less than 1%—most autistic individuals may face challenges, such as co-occurring conditions like anxiety, depression, or ADHD.

00:12:55.680 It is essential to understand that autism is not a ‘male disorder.’ Due to societal biases, many girls with autism are misdiagnosed or diagnosed much later in life.

00:13:24.240 This can lead to damaging repercussions, such as inadequate access to support or treatment. It is vital that research and diagnostics be inclusive of all genders.

00:13:54.360 To help support those with autism, we must acknowledge that there are many treatment options available, although there is no specific medication for autism itself.

00:14:16.080 Instead, we focus on early detection and intervention, with various therapies and support systems tailored to individual strengths and weaknesses.

00:14:50.640 From an employment standpoint, the unemployment rate for autistic individuals is far higher than for those without disabilities, highlighting the need for inclusive workplaces.

00:15:20.760 Participating in the job market can be particularly challenging due to social and communication barriers. Organizations that focus on helping individuals with disabilities gain employment can make a significant difference.

00:15:45.480 The NDIS plays a pivotal role in providing funding to support children with autism in schools, and job access initiatives improve understanding and inclusivity within organizations.

00:16:08.760 It is also essential to dispel harmful stereotypes about autistic individuals regarding their sociability. Many people assume that autistic individuals are anti-social, which can lead to inadequate support for social development.

00:16:31.680 Autistic individuals can engage in meaningful social interactions, even if it may not look the same as interactions between neurotypical individuals. For example, many autistic people excel at parallel play.

00:17:01.500 In workplace settings, inclusivity and sensitivity to diverse communication styles can help foster appropriate connections.

00:17:29.520 Providing a structured onboarding and mentoring process can help autistic employees feel supported and understood. Clear communication is key.

00:17:51.600 Understanding that accommodations may be necessary is vital; for example, some autistic employees may benefit from flexible working conditions that allow them to manage sensory overload.

00:18:16.200 Clearly defining roles and offering predictable routines can create stability and comfort for autistic individuals in the workplace. Opportunity for mentorship can also improve outcomes.

00:18:42.840 Lastly, offering optional social engagements can allow individuals to participate at their comfort level, which is crucial for everyone’s wellbeing.

00:19:07.380 However, it's vital to prevent burnout, as autistic individuals may push themselves to meet expectations at the risk of mental health.

00:19:33.600 Masking, or hiding one’s true self, is common in social situations and can lead to exhaustion. Building a workplace culture where individuals can be true to themselves ultimately enhances productivity.

00:20:05.520 In conclusion, fostering an inclusive and accepting environment is paramount for everyone in a workplace. Asking individuals about their needs and implementing accommodations proactively can promote belonging and respect.

00:20:30.900 Accepting that people may need to express themselves differently, whether through stimming or other methods, can enrich workplace diversity and improve morale.

00:20:53.280 Thank you all for listening!

RubyConf AU 2023