Unlocking Autism Communication: Andrew and Jakob’s Journey

Unlocking Autism Communication: Andrew and Jakob’s Journey

Autism and communication are intertwined topics that have been gaining more attention in recent years, particularly for non-speaking individuals or those with unreliable speech.

Two young men I have been working with as an autism/play therapist for almost 20 years, Andrew and Jakob, shared their inspiring journey of gaining communication abilities through spelling in a special event: An Evening of Spelling with Andrew and Jakob: Autism, Apraxia, and Autonomy.

This event held in June provided a powerful platform for understanding the profound challenges and triumphs experienced by individuals on the autism spectrum.

 

Watch the full recorded event

 

Two Handsome Guys Journey Toward Verbal Communication

For many individuals with autism spectrum disorder (ASD), the world is a place full of unspoken thoughts, misunderstood intentions, and silent dreams.

Andrew and Jakob have lived much of their lives struggling with speech and language difficulties not only from their autism, but also from a secondary condition known as apraxia.

Apraxia disrupts the brain’s ability to send clear signals to the muscles required for movement, this includes the muscle movements involved in speech. This disruption can result in unreliable speech that fails to accurately convey their true thoughts.

 

The "A-" in apraxia means TOTAL or COMPLETE loss.
"PRAXIA" means the execution of voluntary muscle movements.
Apraxia = total loss in execution of voluntary muscle movements
Source:  CommunicationforEducation.com

 

The breakthrough for both young men came when they began exploring a method of communication known as text-based communication.

This approach, championed by therapists like Julie Sando of Autistically Inclined, allowed them to bypass the challenges posed by apraxia and finally express the thoughts, emotions, and insights that had been locked inside them for years.

In 2020, Jakob and Andrew began spelling with me under the guidance and direction of Julie Sando, an experienced communication partner and teacher. Jakob’s mother Jenn Jordan and I enrolled in online classes with Julie at Autistically Inclined and began our journey in text-based communication.

Over time, both Jakob and Andrew became skilled in this text based communication method, leading to an emotional milestone in 2023 when they were able to communicate openly for the first time. For their families, this achievement was life-changing, turning a long-held dream into reality.

Andrew and Jakob, along with their therapists and loved ones want others to know that for non-speaking individuals, gaining communication isn’t just about words—it’s about gaining access to relationships, aspirations, and a true sense of autonomy.

 

Jakob's mom, Jenn Jordan discusses the emotional impact of communicating with her son.

 

Exploring Apraxia and Regulation

Understanding the challenges faced by non-speaking individuals with autism requires an appreciation of the underlying role of apraxia and the importance of emotional and sensory regulation.

Apraxia is more than just a barrier to speech; it represents a significant disconnect between the brain’s intentions and the body’s actions. Andrew and Jakob illustrated this disconnect vividly during the event, describing how their external behaviors often mislead others into underestimating their intellectual abilities.

It is like I am living two lives at the same time. One life is the life you see. It is limited to a few select topics that keep my world small. The other life is what you don't see. It is an expansive world full of depth and wonder. ” – Jakob

Effective communication for individuals with autism and communication difficulties hinges on regulation. Regulation refers to the ability to manage sensory input, emotions, and physical responses.

Without proper regulation, accessing reliable communication becomes nearly impossible. Both Andrew and Jakob emphasized how dysregulation—whether from sensory overload, anxiety, or emotional distress—can derail their attempts to communicate.

For example, loops, or repetitive actions and phrases, often emerge as a coping mechanism when they feel dysregulated.

This aspect of autism and communication problems is crucial for caregivers, educators, and therapists to understand. Before meaningful communication can occur, the individual must be in a state of regulation.

This knowledge is embedded in the teaching approaches of therapists like Julie Sando and me, who prioritize creating an environment where individuals feel safe, calm, and ready to communicate.

 

Learn more about the Text-Based Communication Starter Kit for Apraxia and Autism

Text-Based Communication Starter Kit for Apraxia and Autism

 

Overcoming Misconceptions in Autism and Communication

 A theme emphasized throughout the An Evening of Spelling event was the need to dispel the misconceptions surrounding non-speaking individuals with autism.

Historically, non-speaking individuals with ASD have been unfairly labeled as cognitively impaired or intellectually disabled due to their inability to use conventional speech. This misrepresentation has had lasting consequences, resulting in missed educational opportunities, social exclusion, and low expectations from society.

Andrew and Jakob’s stories challenge these outdated stereotypes. Despite being labeled as having the intelligence of a third-grader, Andrew’s intellectual depth and creativity shine through his newly acquired ability to communicate.

He now writes songs, crafts witty humor, and contributes to his family’s business. Jakob, who once faced similar misconceptions, is now pursuing his passions in business, art, and acting.

We must reconsider how we measure intelligence and capability. Just because someone does not speak does not mean they do not have rich, nuanced thoughts and a desire to connect with the world.

The inability to say what I intend is so anxiety producing. Because I appear much simpler than I am. – Andrew

This statement encapsulates the frustration many non-speaking individuals experience, as they are often judged by their external behaviors, such as speaking in a flat voice or repeating words, rather than their internal intelligence.

By challenging these misconceptions, Andrew and Jakob advocate for a more inclusive understanding of autism and communication, one that recognizes the diverse ways people can express themselves.

 

Andrew introduces himself with help from his communication partner, Julie Sando.

 

 

Empowerment and Advocacy in the Autism Community

Gaining the ability to communicate has not only changed Andrew and Jakob’s lives but also transformed them into powerful advocates for the autism community. They emphasize the importance of autonomy and freedom—two concepts that were once out of reach due to their communication barriers.

Now that they can express themselves, they are reclaiming control over their lives, making decisions that align with their true desires, and influencing how others perceive non-speaking individuals.

For Andrew and Jakob, freedom is about having the power to choose without being limited by others’ misconceptions or by their own involuntary impulses.

Freedom is the ability to choose without having your choices hijacked by impulses that lie about who you are. ”  – Andrew

 

Andrew’s statement highlights the constant battle between their inner selves and the outward behaviors imposed by autism and apraxia.

Their advocacy also extends to urging others to believe in the potential of non-speaking individuals. Both young men encouraged the audience to look beyond surface-level behaviors and recognize the capabilities that lie beneath.

They called for more widespread adoption of autism communication strategies like text-based communication, which have proven to be life-changing for them.

Their message was clear: when non-speaking individuals are given the tools to communicate, they can fully participate in society, pursue their dreams, and live fulfilling lives.

 

Jakob introduces himself with help from his communication partner, Julie Sando.

 

Future Aspirations and Achievements

One of the most inspiring aspects of the event was hearing Andrew and Jakob discuss their future aspirations—dreams that were once unimaginable before they gained communication abilities.

Both young men have ambitious goals that reflect their talents, passions, and determination to make a difference in the world.

Andrew has discovered a love for songwriting and music production. He even debuted an original song during the event, showcasing the artistic creativity that was locked inside him for years.

His goal is to pursue a career in music, and he expressed excitement at the possibility of creating more songs.

Jakob has embraced entrepreneurship and creativity. He now runs two shops where he sells his art and merchandise, a venture that brings him immense joy and fulfillment. He’s also landed a lead role in a feature film and an opera.

He envisions a future in public speaking, where he and Andrew can take their message on the road, advocating for more inclusive autism communication strategies and inspiring others along the way.

Their stories are a testament to the transformative power of communication. With the right support and autism communication tools, individuals with autism communication challenges can achieve great things, turning their dreams into reality.

Rethinking Autism and Communication

An Evening of Spelling with Andrew and Jakob was more than just an event; it was a celebration of resilience, determination, and the human need to connect.

Through their stories, Andrew and Jakob have redefined what it means to live with autism and communication difficulties. They have proven that non-speaking individuals or unreliable speech are not limited by their inability to use traditional speech but are instead full of potential waiting to be unlocked.

Their journey underscores the importance of rethinking how we approach autism communication strategies. By providing non-speaking individuals with the tools they need to express themselves, we open up a world of possibilities—possibilities that include autonomy, freedom, and the chance to contribute meaningfully to society.

In a world that often judges by appearances, Andrew and Jakob’s stories remind us that true understanding requires us to look deeper. They are living proof that communication is not just about speaking—it’s about being heard, understood, and ultimately, living a life true to one’s self.

Get Tickets for their Next Event

Andrew and Jakob are holding another event on September 14 in Cincinnati, Ohio called An Afternoon of Spelling with Andrew & Jakob: Two Handsome Guys with Autism, Apraxia and Autonomy.

For more information on the event and to purchase tickets: Learn more about Two Handsome Guys Event

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