Invisible Diversity: A Story Of Undiagnosed Autism | Carrie Beckwith-Fellows | TEDxVilnius

Summary

In this powerful talk, Tanya Cushman shares her deeply personal journey of being diagnosed with autism at the age of 35. She explores the unique challenges autistic people face, such as sensory issues, social communication difficulties, and executive function struggles. Tanya emphasizes the dangerous impact of masking autism, which often leads to misdiagnoses and mental health issues. She advocates for embracing autistic individuals' true selves and stopping the harmful practices of forcing them to conform. Ultimately, she calls for greater understanding, acceptance, and support for autistic people to thrive.

Takeaways

• 😀 Autism is not a straight line; it is a spectrum with a range of traits and variations. It's like a kaleidoscope of colors rather than a simple continuum.
• 😀 Autistic people may experience sensory issues, where they perceive the world differently, like heightened or muted sensitivity to sounds, lights, and other stimuli.
• 😀 Communication can be challenging for autistic individuals. They may struggle with understanding body language, sarcasm, and figurative speech, taking things literally.
• 😀 Executive function issues in autism can make tasks like planning, organizing, and time management difficult, affecting daily life and work.
• 😀 Repetitive behaviors, such as deep interests or stimming, are common and serve as important coping mechanisms for autistic individuals.
• 😀 The labels of 'high-functioning' and 'low-functioning' autism are often misleading and fail to accurately represent the full spectrum of abilities and challenges.
• 😀 Autistic people feel emotions intensely, sometimes much stronger than others, but may struggle to identify or name those emotions.
• 😀 Anxiety is a major aspect of living with autism, with everyday routines serving as a way to manage overwhelming emotions and sensory overload.
• 😀 Meltdowns in autistic people are not tantrums but intense, uncontrollable emotional and sensory breakdowns, akin to a seizure, requiring time to recover.
• 😀 Masking autism—concealing true autistic traits to fit in—can have serious consequences, leading to identity struggles and even mental health issues like self-harm and eating disorders.
• 😀 Society often forces autistic individuals to mask their behaviors, which can be harmful to their mental health. Autistic children should be encouraged to express their true selves and allowed to embrace their unique qualities.

Q & A

What is autism, and how does it affect those who have it?

Autism is a condition that affects how a person communicates, relates to others, and experiences the world. Autistic people see, hear, and feel the world differently. While no two autistic people are the same, they often share common traits such as sensory issues, difficulties with social communication, executive function challenges, repetitive behaviors, and stimming.

How is autism often misunderstood in terms of severity?

Many people believe autism is a spectrum with severe autism at one end and mild autism at the other, but this is inaccurate. Autism is more like a kaleidoscope, where traits blend into each other, and the severity is not a straight line. The terms 'high-functioning' and 'low-functioning' are often misused and don't fully capture the complexity of autism.

What are some common traits of autism?

Common traits of autism include sensory issues (heightened or reduced sensitivity to sensory stimuli), social communication challenges (difficulty understanding body language, sarcasm, or humor), executive function difficulties (trouble planning and organizing), repetitive behaviors (intense focus on specific interests), and stimming (self-soothing behaviors).

How does anxiety manifest in someone with autism?

For many autistic individuals, anxiety is a dominant experience. It often manifests as intense emotions that are hard to identify. They may feel emotions 200-400% stronger than others but struggle to name or describe them, leading to chaos in their emotional world. Anxiety can also be triggered by disruptions in routines, leading to meltdowns or other stress responses.

What is a meltdown for an autistic person?

A meltdown is an intense and uncontrollable emotional and sensory overload. It's not a tantrum, but rather a seizure-like experience where the person cannot stop it, even though they may be semi-aware. After a meltdown, the individual is often left exhausted and needs time to recover.

How does sensory overload impact people with autism?

Sensory overload occurs when the volume of sensory input becomes overwhelming. For example, an autistic person might hear multiple sounds in a coffee shop, like a milk frother, coffee grinder, and conversations, making it hard to focus on just one thing. Similarly, bright sunlight or certain colors can feel painful. The sensory experience is often heightened or multiplied compared to what non-autistic people experience.

What is the significance of stimming for an autistic person?

Stimming refers to repetitive behaviors, such as hand-flapping or finger-twitching, that serve as a form of communication, emotional regulation, or sensory filtering. It is crucial for autistic individuals as it helps them process overwhelming emotions, block out sensory overload, and even prevent meltdowns. However, stimming is often discouraged in social settings, which can lead to difficulties in emotional expression.

What is 'masking' and why is it harmful?

Masking is the act of hiding or suppressing one's autistic behaviors to fit in with societal expectations. It involves mimicking social behaviors like eye contact and conversation patterns. While it might help an individual appear more socially acceptable, it can be exhausting and damaging, leading to a loss of identity and increasing mental health struggles.

How does the expectation of 'masking' affect autistic individuals, especially girls?

Girls with autism are particularly adept at masking their true selves. They learn from a young age to hide their autism by copying others' behaviors and suppressing their natural responses, like stimming. This makes it harder to diagnose autism in girls and leads to greater emotional strain as they grow up, sometimes resulting in mental health issues like eating disorders or self-harm.

How did the speaker's autism go undiagnosed for so long?

The speaker's autism went undiagnosed for 35 years because of the societal emphasis on social behaviors like eye contact and making friends, which are not natural for autistic individuals. The speaker learned to mask her autism, hide her confusion, and suppress her behaviors. As a result, doctors misdiagnosed her with conditions like bipolar disorder and depression, leading to ineffective treatments and psychiatric interventions.