First, we are human.
Before reading this post, please remember that this article describes my personal experience, feelings, and perceptions during this journey. My views were influenced by my knowledge, experiences, biases, and assumptions at the time. I do not present them as right or wrong, only as an honest reflection of what I experienced.
Additionally, this account describes events from the past. My understanding and beliefs have evolved over the years, and I now view autism and the autistic experience with a much deeper level of understanding than I did at that time.
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First Signs and Growing Concerns
I am going to be honest: the idea of my son being autistic was off-putting at first. My knowledge and assumptions at the time had created a stereotypical image of autism in my mind.
I am sure few parents would say, “I want my child to face additional challenges in life.” Parenting is often filled with hopes for a healthy, happy, and thriving child. At the time, I did not notice significant differences between my son and my neurotypical children. The differences became more noticeable as time passed and developmental delays, particularly in speech, became more apparent. I kept feeling as though I was waiting for him to “outgrow it.”
Advice from others was often, “It’s just a delay. It’s probably nothing serious.” Naturally, I gravitated toward explanations that aligned with what I wanted to believe. I read books such as The Einstein Syndrome to explore alternative possibilities and calm my worries.
My husband and I noticed the delays, but at first they still seemed within the wide range of typical development. As time went on, however, our concerns grew. I found myself spending countless hours researching possibilities and getting stuck in what I now call the “It’s just…” loop.
It’s just a phase.
It’s just a speech delay.
It’s just me overreacting.
It’s just that he’s too busy to talk.
It’s just that he’s not interested.
As more time passed, those explanations made less and less sense. Our worries continued to grow, and eventually we decided it was time to seek professional advice.
At his two-year checkup, his speech was limited to only a few one-syllable words. Otherwise, he appeared similar to many of his peers. The visit ended with the doctor recommending further evaluation, including an autism assessment.
That doctor’s appointment devastated both my husband and I. Every stereotype I had absorbed through media, popular culture, and limited personal experience immediately flooded my thoughts. I jumped to the worst-case scenarios.
I turned to the internet and began searching for answers. At the time, aside from the speech delay, I did not recognize many of the signs that I associated with autism. I did not see behaviors that I believed were typical for autism, such as rocking or hand flapping. He seemed bright, understood much of what we said, and had boundless energy.
Looking back, what I really meant was that he did not match my limited and stereotypical understanding of autism.
At that moment, denial appeared in full force. Both my husband and I agreed that autism could not possibly explain what we were seeing.
Fear, Denial, and Searching for Answers
Hello, Rebecca and Adam. Meet denial.
My understanding of the situation was, quite simply, wrong. I searched for explanations that felt more comfortable, more likely, or less frightening. I misinterpreted information and dismissed possibilities that made me uncomfortable.
My husband and I unintentionally reinforced each other’s denial. We convinced ourselves that our child could not possibly be autistic. What I was really searching for were answers that would reduce my anxiety.
At the time, I did not realize that avoiding the possibility of autism would only increase our fear, misunderstanding, and unrealistic expectations.
As you can see, much of my fear came from misunderstanding what autism actually was.
My mind drew upon stereotypes, inaccurate media portrayals, and limited information. As I searched online, I encountered countless proposed “solutions,” ranging from dietary interventions to potentially harmful procedures.
The internet provided an overwhelming amount of information, some helpful, some misleading, and some outright harmful. Fortunately, we knew enough to avoid dangerous recommendations.
At the time, my connections to the autistic community were very limited, so much of the information I encountered came through the perspectives and biases of others.
Among the harmful claims were articles promoting chelation therapies, blaming parents for autism, or suggesting that autism could be disciplined away. These ideas were deeply harmful and unsupported by evidence.
During my research, I also encountered the outdated concept of “refrigerator mothers” as a cause of autism. Reading this created additional guilt because I worried that I might somehow be responsible. Thankfully, I later learned that this theory had long been disproven.
Over time, my research helped replace many of my misconceptions with a more evidence-based understanding of autism. I began to understand that autism was not simply hardship or tragedy. It was a complex neurodevelopmental condition with many different presentations and experiences.
One concern that remained, however, was financial. The possibility of evaluations, therapies, and ongoing support created anxiety about the future. Even today, that concern remains real for many families.
Although doubt lingered, my understanding was becoming more realistic and informed.
Despite our doubts, nearly every source emphasized the importance of early intervention and support.
Without fully accepting the possibility of an autism diagnosis, I began looking into speech therapy and other developmental support programs. Eventually, I found a local school-based program that could provide services without requiring us to immediately confront labels we were not yet emotionally prepared to accept.
While we appreciated the support, his speech progress remained limited. By age two and a half, we had not seen the improvement we had hoped for. At that point, we accepted that a comprehensive evaluation was necessary.
Receiving the Diagnosis
Reluctantly, my husband and I moved forward with the evaluation.
By the end of the assessment, we were told that he met the diagnostic criteria for Autism Spectrum Disorder. At the time, because of the extent of his speech delay, he was diagnosed as Level 2, reflecting the support needs observed during the evaluation.
Even then, denial lingered. We still struggled to see what the evaluators saw. Despite our uncertainty, we pursued recommended support and services.
It took months before I fully accepted the diagnosis and allowed myself to move forward. The stress affected both my husband and I. Ultimately, however, we wanted to provide our son with the best opportunity to navigate the challenges he might face and build the skills he needed to thrive.
Acceptance, Support, and Understanding
Today, we have no doubt that our son is autistic, although his presentation looks very different from the stereotypes we once associated with autism. Many people who meet him are unaware of his diagnosis and simply describe him as energetic, creative, or silly.
Once we began working through our denial, we started to see our son more clearly for who he was rather than who we feared he might become. We paid closer attention to his actions, his frustrations, and the ways he experienced the world around him.
Over time, we realized that this had been a journey for him as well.
He understood far more than many people realized, yet he had fewer ways to communicate his thoughts, needs, and feelings. People often assumed that because he struggled to communicate verbally, he struggled to understand. Too often, he was directed rather than included. He was talked at rather than talked with. Adults and children sometimes moved him physically or made decisions for him without first trying to communicate or gain his cooperation.
Looking back, I can only imagine how frustrating that must have been for him.
As we observed more interactions between him and others, we became stronger advocates for him. We moved beyond simply accepting a diagnosis and began focusing on understanding his experiences and helping others understand them as well.
My husband and I sometimes feel guilty that it took us so long to reach that point. However, understanding does not appear overnight. It comes through learning, experience, self-reflection, and growth. We had to work through our fears before we could fully support him in the ways he needed.
Receiving the diagnosis prompted us to become more proactive in seeking support and resources.
Many professionals and organizations emphasized the value of early intervention and support in helping autistic children develop skills, navigate challenges, and improve their quality of life. We began researching available programs and services, although many had limited availability or eligibility requirements.
I frequently asked providers for recommendations, resources, and educational materials. As our knowledge expanded, we also began discovering autistic voices and perspectives within the broader autism community. These perspectives helped us better understand autism beyond the clinical descriptions and stereotypes we had previously encountered.
Over time, we explored various supports and services while trying to find the combination that best met our son’s needs and worked within our family’s practical limitations, including finances, scheduling, and other responsibilities.
Looking back, I believe many parents experience some version of the emotional journey we went through. While every family’s story is different, uncertainty, fear, grief, hope, confusion, and growth often coexist during the diagnostic process.
The diagnosis was challenging for everyone involved, and our patience was tested many times.
Since then, our journey has been one of continual learning and growth. We continue to learn more about our son, autism, and the many ways individuals experience and interact with the world.
There have been difficult moments, but there have also been meaningful and rewarding ones. Some of our greatest lessons came from experiences that were initially uncomfortable or challenging. Those experiences pushed us to reconsider assumptions, adapt our approaches, and better understand our son’s needs.
Today, our son has grown tremendously, and so have we. Our understanding continues to evolve, and we recognize that learning is an ongoing process rather than a destination.
Why We Share Our Story
When I look back on those early years, I see many things I misunderstood.
Today, I recognize behaviors that I overlooked at the time. I see the stimming, the intense interests, the social challenges, and the unique ways he processes and experiences the world.
More importantly, I no longer view those traits solely as symptoms. I see them as part of who he is.
Many of the frustrations we experienced were not acts of defiance or stubbornness. They were often the result of unmet needs, communication barriers, sensory overwhelm, or situations that exceeded his ability to cope in that moment.
What we once interpreted as tantrums were often meltdowns caused by overwhelming circumstances. What we viewed as resistance was sometimes confusion, anxiety, or difficulty communicating.
However, we are human.
We made mistakes. We misunderstood things. We reacted based on the information and beliefs we had at the time.
Looking back, I can see how fear and misinformation created unnecessary anxiety and reinforced stereotypes that ultimately did not help our family. Yet those mistakes also became opportunities for growth. Through them, we learned to question assumptions, seek better information, and become more thoughtful advocates.
While I wish some parts of the journey had been easier, I also recognize that those experiences helped us arrive at a place of greater understanding, empathy, and connection.
Reflecting on this journey reminds us why we have chosen to share our story.
We share it because there may be another parent standing where we once stood feeling overwhelmed, uncertain, afraid, and searching for answers.
We share it because misunderstandings about autism still exist, and those misunderstandings can create unnecessary fear for families beginning this journey.
Most importantly, we share it because we want to advocate for our son and for the community that has become part of our lives.
Our goal is not to speak over autistic voices but to help build understanding between autistic individuals, their families, educators, professionals, and the broader community. If sharing our experiences helps even one family feel less alone or encourages one person to approach autism with greater understanding and compassion, then sharing our journey has been worthwhile.
Our son’s diagnosis did not change who he was. It changed how we understood him. That understanding has made all the difference.