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Woman diagnosed with Autism Spectrum Disorder at 37 years old: ‘That feeling of not wanting to live anymore disappeared’

One day, I came across a story on the internet from an autistic woman in another part of the world. A sense of identification resonated deeply inside me. Taking those concerns to my therapist, I heard a devastating message: You can’t be autistic. You communicate well, work, and are financially independent. To other people, those achievements overrode the possibility of me being autistic.

  • 8 months ago
  • September 24, 2023
8 min read
As a child, Andrea Cukier struggled with symptoms of Autism Spectrum Disorder but went undiagnosed until the age of 37. | Photo courtesy of Andrea Cukier As a child, Andrea Cukier struggled with symptoms of Autism Spectrum Disorder but went undiagnosed until the age of 37. | Photo courtesy of Andrea Cukier. | Photo courtesy of Andrea Cukier
INTERVIEW SUBJECT
Andrea Cukier was born in Buenos Aires, where she still resides. She is a sound content creator, working in digital communication and journalism. As a freelance professional, she coordinated the digital communication and entertainment at the festival ‘Campus Party’ in Argentina, Uruguay, and Paraguay. She collaborates annually with the social media team of World Emoji Day. At the end of 2018, she co-founded Drop The Mic Argentina, a local community of producers, hosts, and enthusiasts in the podcast industry, which in 2019 was awarded by the Professional Radio Council of Argentores. She has an Instagram account and podcast for and by Autistic people.
BACKGROUND INFORMATION
The Autistic Self Advocacy Network (ASAN) is a nonprofit organization run by and for autistic people. They espouse the motto “Nothing about us without us.” According to ASAN, “Autism is a developmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are. Autism has always existed. Autistic people are born autistic and we will be autistic our whole lives.” Extensive research indicates women often go undiagnosed, leading to negative outcomes in childhood and adulthood.

BUENOS AIRES, Argentina — I sat in my house with my partner in the middle of the COVID-19 Pandemic as we connected to a video call with my psychiatrist. Fear consumed me. “What if he tells me I am not autistic,” I worried. “How will I find out what is wrong with me?” At 37 years old, I had grappled with immense anguish since childhood.

The low quality of my life left me with a constant, nagging thought: I no longer want to live. The thought persisted relentlessly, and while I never acted on it, I desperately needed an answer – a way to channel what I felt inside. The moment the psychiatrist confirmed my diagnosis of Autism Spectrum Disorder, tears of joy streamed down my cheeks. That feeling of not wanting to live anymore disappeared. The change was automatic, replaced by a sense of euphoria, like I won the lottery.

Read more Autism stories at Orato World Media.

Early indicators of Austism Spectrum Disorder, masking my thoughts and behaviors

For years, I lived in a nebula – a giant cloud of dust and gas in space. My whole life, I bore the weight of feeling wrong and crazy, like no one in the whole world understood me. I knew something different existed inside me, but no one validated it. I always felt strange and broken, like the odd one out, like I never fit in the world.

My point of view often fell outside the parameters of what was considered “normal.” Sometimes that was positive, and sometimes negative. At four years old, I learned to read, and the kindergarten teacher asked me to read stories to my classmates. What should have felt good, turned ugly. The other mothers felt like the teacher gave me special treatment, putting me above their kids. At a young age, I learned quickly, my differences rubbed people the wrong way.  

I began to mask my feelings, beliefs, and behaviors, preferring solitary activities. I got lost in reading, listening to the radio, and recording songs. In public, I strove to behave like everyone else – trying with all my might. I wondered, “Do they believe me, or can they see that I’m different?” I hung pictures of famous actors in my room even though I didn’t like them. Despite my best efforts, my peers alienated me anyway.

At dances, the loud noises left me dazed. All the smells caused me great discomfort. While others drank alcohol, I avoided it because it overstimulated me. To handle all of that, I stayed off to the side, taking people’s coats to be involved at the dance without feeling overwhelmed. When my peers saw me, they pointed and put me down. Harassed and isolated, I never remember feeling happy. I seemed to be different in almost every area of life and by masking, I restricted my own mind.

You communicate well and you have a job: You can’t be autistic

Today, I can look back and recognize my autistic traits throughout my life. I see how too many stimuli dysregulated me. When a music cassette ended, it made a particular sound, and it absolutely terrified me. When I played on the floor as a child, I often lifted my feet up so they would not touch. Today, I understand I was born an autistic person and everything in my brain functions through that autistic lens. I carried that with me into adulthood.

At 18 years old, I took my first job and experienced a crisis – an autistic meltdown. I managed to overcome it but soon, it happened again while taking classes. I suddenly became hyper aware of my surroundings, the people hovering nearby, and my every move. At the same time, something felt very strange – like I could not understand what any of it meant. Despite feeling anchored in time and space, everything seemed foreign.

A deep fear took over and I called my mother who took me to the hospital, where they administered medication. They treated me under a different diagnosis for panic attacks, giving no space for the idea I may be autistic. With no tools or strategies to regulate myself, everything began to overflow, knocking me down little by little.

Though each treatment revealed small improvements, I always returned to my initial state of dysregulation or worse. One day, I came across a story on the internet from an autistic woman in another part of the world. A sense of identification resonated deeply inside me. Taking those concerns to my therapist, I heard a devastating message: You can’t be autistic. You communicate well, work, and are financially independent. To other people, those achievements overrode the possibility of me being autistic.

At 40 years old, I want to live

Frustrated and confused, I acted – going to an autism center to begin the diagnostic process. After wasting so much time and money on professionals who ignored my pleas, a change became necessary. After a lengthy and expensive process, the psychiatrist confirmed my suspicions and gave me the diagnosis of Autism Spectrum Disorder.

My partner and I immediately went out to a restaurant to celebrate what felt like the greatest milestone of my entire life. I quickly began to think deeply about my diagnosis and soon, a desire formed. If I could leave something good in the world that helps other people like me, they may find answers sooner. I am not the first autistic person, nor will I be the last.

I created an Instagram account called Femiautista and began uploading content. Today, I have almost 10,000 followers. I also started the Femiautista podcast – a show about autism and identity in the first-person, without intermediaries. People often speak of autism in childhood, and that’s okay, but what about people like me? Consider the fact that more and more women are being diagnosed in adulthood. We go without support for too long. An autistic male is more likely to be diagnosed in childhood than a female.

Further, research clearly points to higher suicide rates and suicidal ideation in autistic people. Plus, we find it difficult to access support. Now, at 40 years old, I want to live and I want all people like me to defy these troubling statistics.

Challenges remain but I built a new world myself

My journey since diagnosis has not always been easy and I still face obstacles. Many people think being an autistic person is fashionable nowadays. It may seem fashionable, but we still face prejudice and marginalization. Ironically, the worst hate and harassment on social media I faced came from adults – relatives of other autistic people who seek to discredit me.

They say, “You are an adult. You can work, communicate, study and be financially independent.” They imply I have “lower-level” autism and it bothers them. [Practitioners and members of the autistic community have moved away from using the phrase “high-functioning autism” because it discredits the very real challenges people face.]

Despite all of this, I experience the happiest moments of my life today. Yes, I live with the stress of processing stimuli. I face ignorance and I disbelief from other people. Doctors still say ridiculous things like, “Just don’t get stressed,” but my life went from a three or four out of 10, to an eight.

I used to wake up everyday feeling terrible and putting forth enormous effort to not feel so bad. Today, I respect my time, surround myself with people who understand, and enjoy a waiting list of clients. I have lived with autism my entire life and got diagnosed at 37 years old. Finally being able to understand my behavior freed me; I built a new world for myself and I’m thoroughly enjoying it.

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