Discovering My Autism as an Adult and Embracing It

April serves as Autism Acceptance Month, and it's a pivotal time to reflect on the insights and journeys of individuals navigating the spectrum. In this piece, Sydney shares her profound discovery of being on the autism spectrum at the age of 40. This revelation not only reshaped her self-identity but also illuminated her interactions with those around her.

As she recounts her experience, it becomes apparent how understanding autism can lead to deeper empathy and enhanced communication in relationships. Her story is a powerful reminder of the spectrum's diversity and the importance of acceptance. By sharing her journey, she hopes to foster a greater awareness that could resonate with others who might find themselves in similar situations.

Discovering autism as an adult woman

The global pandemic has had a profound impact on many aspects of our lives. For some, it became a time for self-reflection and personal growth. In the midst of uncertainty, many people discovered hidden talents, embraced new hobbies, or re-evaluated their life choices. For me, it was a time of homeschooling, stress-eating, and late-night research sessions that led to a revelation: I discovered that I'm autistic.

At 40, learning that I had been on the spectrum my entire life was both surprising and enlightening. It forced me to re-evaluate my past experiences and relationships in a new light, providing clarity on aspects of my personality and behavior that had always felt different.

Understanding autism awareness and acceptance

Before diving into my discovery, it's essential to discuss what autism is and what it isn't. Autism is often misunderstood, and the goal of this post is to promote awareness and acceptance while debunking common misconceptions.

Many adults, especially women, discover their autism later in life. The journey of self-discovery can be long and winding, but it can also be incredibly empowering. My experience with a diagnosis once known as Asperger's syndrome highlights the importance of understanding the nuances of autism.

While I have enjoyed a relatively independent life, countless individuals face significant challenges due to their autism. Early diagnoses can provide crucial support for children, but adults like me may find themselves navigating the complexities of autism without a clear understanding of what it means.

For broader perspectives on autism, I recommend reading the blogs of Eileen Shaklee and Kate Swenson. They share the realities of raising autistic children, including their fears and triumphs.

Defining what autism is and isn’t

Let's clarify some critical misconceptions about autism. Autism Spectrum Disorder (ASD) is not a mental health disorder; rather, it is a neurological condition marked by physical differences in brain structure and neurotransmitter levels.

The term “neurodivergent” describes individuals with autism and other mental variations, contrasting them with “neurotypicals,” who do not have these differences. Autistic brains are wired uniquely, leading to different ways of processing stimuli, emotions, and social interactions.

Importantly, autism is an invisible condition; an individual does not “look” autistic. This invisibility contributes to misunderstandings and the perpetuation of stereotypes, such as the notion that one must exhibit particular traits to be considered autistic.

The complex and evolving history of autism

Understanding autism requires a grasp of its rich and evolving history. Autism is not a recent phenomenon; it has been documented for over two centuries. The term “autism” was first used in 1908, but significant awareness began only in the mid-20th century when Leo Kanner published his research on autism in children in 1943.

One critical point is that autism is not caused by vaccines. The infamous 1998 study linking the MMR vaccine to autism has been debunked and retracted, and the myth surrounding thimerosal, a mercury-based vaccine preservative, has also been disproven. Currently, no single cause of autism is identified; it is understood to arise from a combination of genetic and environmental factors.

The complexity of ASD means that it manifests uniquely in each person, which is why we refer to it as a “spectrum.” The range of characteristics and severity can vary dramatically, necessitating a more nuanced understanding of what it means to be autistic.

How girls and women have been overlooked or misdiagnosed

Traditionally, autism was thought to primarily affect males. However, increasing research has revealed that girls and women can also be autistic, albeit often presenting differently, making diagnosis more challenging. This discrepancy has led to many women being overlooked or misdiagnosed.

For a deeper understanding, I found a TED talk by Niamh McCann, who discusses hidden Asperger's traits in girls. Her insights resonated with my experiences and those of many others, illustrating how societal expectations can mask autism in females.

The complexities of language and communication often lead to misinterpretations. For instance, phrases like “He bent over backwards” or “She was on the ball” might confuse individuals on the spectrum, who may interpret them literally rather than metaphorically.

Experiencing delays in communication processing

Another trait many autistic individuals share is experiencing delays in processing spoken language. I often find myself asking, “What did you say? Can you repeat that?” This isn't due to hearing loss but rather how my brain processes language differently. Understanding this has helped me navigate conversations more effectively.

Why it’s not called Asperger’s anymore

Interestingly, Asperger's Syndrome is no longer recognized as a separate condition. Originally classified in 1994, it was removed from the DSM in 2013 due to the challenges in distinguishing between various categories of autism.

This change upset many in the Asperger's community who felt their identity was being erased. The decision arose from the understanding that labeling individuals as “high-functioning” or “low-functioning” was misleading and unhelpful.

Moreover, the history of Hans Asperger, who was involved with the Nazis, further complicated the legacy of the term. The shift toward a more inclusive understanding of autism reflects a broader societal movement towards acceptance and recognition of neurodiversity.

Understanding the autism spectrum

It's crucial to realize that the autism spectrum is not linear. Current perspectives favor visualizing it as a color wheel, with strengths and weaknesses represented in a more holistic manner. This representation acknowledges that autism exists on a continuum, and individuals may exhibit varying traits and abilities.

Despite advancements, outdated terminology and misconceptions persist. Many still cling to terms like “high-functioning” and “low-functioning,” which do not encapsulate the complexity of individual experiences. It may take time for these outdated terms to fade from common usage.

Other interesting facts about autism

Here are some compelling facts and statistics about autism that shed light on its prevalence and characteristics:

• Approximately 1 in 44 children are diagnosed with ASD in the United States, according to the CDC.
• There is currently no blood test for autism, although brain scans may be a reliable diagnostic tool in the future.
• Autism is a lifelong condition that appears as early as 18 months old; children do not “grow out” of it.
• Autism occurs across all ethnicities and socioeconomic backgrounds, yet minority groups often receive diagnoses later and less frequently.
• About 40% of autistic individuals are non-speaking.
• The DSM-5 classifies autism into three levels: Level 1, Level 2, and Level 3.
• Studies estimate that:
  • 31% of autistic children have an intellectual disability (IQ < 70),
  • 25% are borderline (IQ 71-85), and
  • 44% have average or above average IQ (IQ > 85).
• Approximately 66% of autistic children (ages 6-15) experience bullying, emphasizing the need for better education and understanding in schools.
• Research suggests that between 30-61% of autistic children also have ADHD.
• Early intervention is crucial for improving communication, social skills, and overall development in autistic children.
• Many autistic individuals experience empathy deeply, though they may express it differently, particularly under stress.
• Savant syndrome, previously thought to affect 1 in 10 autistic individuals, may actually be present in 1 in 3, highlighting extraordinary talents alongside cognitive challenges.
• Interestingly, around 50% of savants are autistic and excel in areas such as mathematics, music, language, and art.

How I discovered I’m autistic

My journey of self-discovery began while researching child development, a subject that fascinates me. As a parent, the observations I make about my children's interactions and behaviors lead me down many informative rabbit holes.

One night, while reading about traits associated with Level 1 autism, I experienced a moment of clarity: This describes me perfectly. Initially, I dismissed the thought, but it lingered, prompting further exploration.

My autism self-diagnosis at age 40

After taking an online autism self-assessment test, I anticipated inconclusive results. Instead, the test confirmed what I was beginning to suspect: I am autistic. While self-assessment tools are not definitive, I felt a profound sense of validation.

Communication differences and misunderstandings

Throughout my life, I have often been told that my communication style doesn't align with social norms. Friends and family would express frustration when I didn't grasp underlying meanings or nuances in conversations. Their comments highlighted my challenges in interpreting social cues and responding appropriately.

Despite these encounters being tough to hear, I maintained patience and understanding. My intentions were always positive, even if the outcomes were misunderstood.

After the assessment, I faced a whirlwind of emotions. I felt a mix of excitement, fear, and uncertainty about sharing this revelation with my partner, Sam. Ultimately, I decided to be open and honest.

To my relief, Sam was supportive and curious. He even took the test himself, humorously suggesting that we could be autistic together. His results, however, came back negative, falling within the typical range.

It's essential to note that while self-assessment can be revealing, a formal diagnosis should be sought from qualified professionals. Self-awareness is a powerful tool, and understanding one's own experiences is crucial on the journey to self-acceptance.

Embracing a refined identity

As the months passed, I grew comfortable identifying as autistic. Initially, it felt strange, but as I embraced this aspect of my identity, I found joy in my uniqueness.

I continued to read extensively about autism, leading to numerous enlightening moments. Understanding my thought processes, reactions, and communication styles allowed me to appreciate my individuality.

Glad to keep learning about who I am

While I might have benefited from early awareness of my autism, I also recognize that my current perspective has empowered me to pursue my aspirations without constraints. I am focused on the future and how I can continue to grow.

Thus far, I have only shared my neurodivergent identity with Sam and a select few others. My close friends and family know me as I am, and I don't feel the need to label myself further in those relationships.

This post serves as a means of raising awareness and acceptance of neurodiversity. I hope to educate others about autism while minimizing the fear of judgment or awkwardness in future interactions.

To a more diverse and neurodivergent world

Looking ahead, I am optimistic about ongoing advancements in research, diagnostic methods, and general awareness. It is likely that autism diagnoses will increase, particularly among girls and women, as understanding deepens.

For those interested in notable figures on the spectrum, consider celebrities like Elon Musk, Daryl Hannah, Tim Burton, and Dr. Temple Grandin. Additionally, historical figures such as Albert Einstein and Isaac Newton are speculated to have been on the spectrum, showcasing the diverse talents and contributions of autistic individuals throughout history.

Since my discovery, I have become kinder to myself, and Sam has shown increased patience and understanding. We often share light-hearted moments about my quirks, especially when it comes to interpreting sarcasm in written form.

Look inwards and outwards

My unexpected journey into self-discovery emphasizes the importance of continual learning about ourselves and our surroundings. By deepening our self-understanding, we foster acceptance and compassion towards others.

If you're curious to explore more, I encourage you to read my article, My Autistic Life: From Childhood to My 40s, where I discuss the impact of autism on my life and share resources I've found valuable.

Are you or someone you know on the autism spectrum? What insights have you gained along the way? For those who are less familiar, what aspects of this post resonated with you? Thank you for taking the time to read my story! – Sydney

Sam's thoughts

I am deeply grateful to Sydney for her courage in sharing her story. Writing this post was no easy task, and it has undergone multiple revisions. I admire her willingness to be open about her journey, as it may help others in similar situations.

Even after knowing each other for 25 years, our personalities still differ significantly, which is part of what drew us together initially. Understanding that Sydney may be autistic has prompted me to communicate more clearly and patiently, allowing her the time she needs to process information.

My tendency to joke and seek quick decisions contrasts with her thoughtful approach, reminding me of the beauty in our differences.

To know oneself is the beginning of wisdom,” Socrates once said. Embracing our true selves can be incredibly liberating.

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