Healthy Living

Facing Condescension and Misunderstanding with Autism

Facing Condescension and Misunderstanding with Autism

Marta Rusek was unaware that she had autism until her adult life; however, she found it enabled her to be a more powerful version of herself.

Before her autism diagnosis

Marta knew for most of her life that she wasn't like everyone else. She couldn't necessarily put her finger on what it was, but she found difficulty tying her shoes when her friends would be at double knots. She couldn't even imagine catching up to them when they were reading chapter books.

At social gatherings, she would get overwhelmed and exhausted, and she didn't experience the same ease in making friends that everyone else seemed to.

When she grew up, it was hard for her to hold onto her jobs. She would watch how her colleagues would act in their daily life, and try to copy them, just like she did when she was a young student with those around her. However, no matter how hard she tried to connect with those around her, nothing seemed to be working.

Seeing the signs and symptoms

Marta started to realize that the hardships she experienced in her daily life were actually symptoms of a disability. It happened when she was on a bus, on her way to New York City, in 2013. She was looking through an alt-weekly to pass the time, and started reading an entry about a man who had been diagnosed with autism spectrum disorder at the age of 40. She hadn't realized that someone could be diagnosed so much later in their life, and when she read through the symptoms he experienced, she realized that she went through the exact same things. She explains this experience: "If the road to an autism diagnosis was like a 12-step program, this would have been step 1."

After that fateful bus ride, she started to analyze other areas of her life and found even more aspects of her personality that seemed to be completely in tune with autism. She was unable to speak in full sentences until the age of three, she didn't seem to be able to understand facial expressions like others could, and she had a complete need for routines, and if they were disrupted she would become entirely overwhelmed. She also experienced times where she couldn't control her emotions, especially when she felt overstimulated. In these times, she would often yell or cry out.

Seeing a doctor

It was hard for her to find a doctor who even offered diagnostic evaluations for autism in adults, but by the time she did, she already felt certain that she knew what they would say, and she had accepted it. She still was curious to know for certain, but she had little doubt.

She feared that her life would have to change when the doctor would tell her and wondered how her loved ones, employers, and prospective partners would treat her when they learned.

However, she can now say that she still feels the same love from her family and friends, and they are constantly available to her as a support system. By being open and vocal about her disability, she was able to find a job that she truly loves and employers that value her input, while being understanding of her needs. She does not yet have a partner, but feels confident that anyone who would have a problem with her autism isn't someone she'd have any desire to be with anyway.

Dealing with discrimination

When Marta was on the phone with Orbitz, a trip-planning agency, she had special requests for her accommodations due to her disability. While she notes she is usually optimistic, that optimism fled from her when she heard the customer service representative change from upbeat and friendly to slow and condescending after Marta told her of her condition. She decided to tell her that her behavior made her extremely uncomfortable, and requested to talk with her supervisor. Rose put her on hold for approximately ten minutes—twice. Soon after, Marta heard the familiar beep, meaning there was no longer anyone else on the line, and she had been hung up on.

Marta was not entirely surprised by the situation, as she had certainly heard stories of other people facing such discrimination, but she had never experienced it herself first-hand after her diagnosis of adult autism spectrum disorder. This was the first time she had ever been treated differently than anyone else.

Marta sent a complaint to Orbitz about her experience with Rose, and three days later she received an offer for $100 off the next trip she booked with the company. This solidified to her that they were not committed to making meaningful change.

However, despite the frustration associated with her experience, she felt it made her grow. Before her diagnosis, she probably would not have stood up for herself, or been as cognizant of the fact that she was being treated differently. Now, she's demanding respect. She is sure to be bolder and more outspoken, and open about her needs and boundaries. She used to beat herself up, thinking that she was stupid or unworthy, but now she knows that that's never the way to think and that she has to be an advocate both for herself and for others.

The importance of diagnosis

She has been able to become open and proud of who she is, but she knows that not everyone can reach the point she finds herself at due to barriers in adult diagnosis. This is largely due to statistics and support being targeted towards autism in children. A CDC report even stated that one in 68 children have been diagnosed with autism spectrum disorder, but it is nearly impossible to find what such a statistic would be for adults.

She also recognizes the factors that make her luckier than others when it comes to her ability to be diagnosed. The mindset that he parents instilled in her was that nothing was out of reach for her, leading to many of her successes. At her job, she had strong health insurance and her employer supported her when learning about her diagnosis, which is not always common.

People with autism spectrum disorder are also at a disproportionately high risk of experiencing domestic violence or sexual assault, which needs to be changed. Suicide among those with autism is also relatively high. The isolation from society and barriers to communication make these statistics more understandable, but not a bit more acceptable.

Marta says that she wants her story to inspire everyone to treat people with compassion and patience. She wants students, teachers, parents, and everyone in between to understand that everyone has different learning styles, ways of communication, and modes of processing information. Everyone is going through a different battle the outside world knows nothing about, so it is important to support everyone you meet.