Trusting the Quiet Voice: From Medical Gaslighting to Autistic Self-Recognition
There was a time when I was ignorant about autism—my understanding shaped by media portrayals, fear-based professional advice, and the quiet panic of not knowing. Some years ago, I viewed autism through a deficit lens, even though I loved my child fiercely. Eventually, my prayer changed. I stopped asking God to “fix” my son and started asking for the strength to truly support him.
That shift did not happen all at once. It came through grief, resistance, learning, and the slow, sometimes painful process of unlearning what I had been told to fear.
The Complexity of Early Therapy
Our journey began with a neuropsychologist who was also a speech therapist, recommended by a specialist pediatrician. She misdiagnosed Arthur with Social Communication Disorder and used her dual authority to dismiss my observations that he's hyperlexic. The first therapist also blamed our parenting style, which I felt was judgmental and not culturally appropriate. Although the environment eventually became one of fear and compliance, I still found genuine value in what I learned there.
While waiting in her office, I read the Hanen books she provided. Through those strategies, I saw Arthur’s comprehension grow and found genuine value in the Hanen People Play principles, which focus on building interaction through shared joy rather than performance.
Two strategies especially resonated with me:
The O.W.L. Strategy
The R.O.C.K. Strategy
We practiced early people games—blanket swings, office-chair spins, water-tap play, and song time. These were moments of connection, about finding a shared language of joy and safety.
But as therapy progressed, the tone shifted.
When I asked about introducing AAC (Augmentative and Alternative Communication), I was told to wait because it might “hinder” speech—a persistent and harmful myth. Research clearly shows that AAC supports, rather than prevents, verbal language development.
By withholding access to communication, Arthur was pushed toward verbal demands his nervous system was not ready for, resulting in frustration, shutdowns, and distress.
Most painfully, when those demands overwhelmed him and he melted down, his responses were labeled tantrums instead of recognized as signs of sensory and emotional overload.
The Search for Real Support
After Arthur received a formal autism diagnosis from a UK-trained psychiatrist, we did not return to our first therapist. We hoped the next professional would listen more deeply.
Instead, we encountered new barriers.
One therapist proposed Oral Placement Therapy (OPT) and suggested removing Arthur’s music, songs, and joyful regulatory stims. Arthur is tactile-aversive, and I knew instinctively that this invasive approach would harm rather than help him. While I understand that some stims—such as skin picking—may need supportive intervention, she was targeting the very activities that helped him regulate and feel safe.
In 2019, we met another speech therapist who initially appeared neuroaffirming. She encouraged the use of PECS (Picture Exchange Communication System), an ABA-based approach that felt transactional and unnatural to us. When I suggested introducing visual supports organically—modelling communication as part of daily life rather than enforcing it—I was dismissed. She tried a visual schedule for a few minutes and concluded it “didn’t work.”
When I shared my discomfort with my husband, he responded with what so many parents hear:
“You’re overthinking. These therapists have studied for years. How can you question their expertise?”
The third therapist became the final straw. I realized that continuing to search for the right expert was costing Arthur his safety and autonomy. I knew then that I had to stop looking for experts and start being the expert Arthur needed.
Becoming the Expert Arthur Needed
This is a barrier many parents face—the assumption that professional authority outweighs lived knowledge. But I didn’t stop seeking understanding. I connected with neuroaffirming speech therapists, accessibility specialists, and—most importantly— AAC users whose lived experiences reshaped my understanding through online communities. Their voices became my most trusted teachers.
Slowly, I realized that what had been dismissed as “mother’s intuition” was, in fact, a growing, embodied awareness of neurodivergent needs—an awareness that deepened when I recognized something else: I am autistic too.
When clinical options proved too rigid to introduce robust AAC in a respectful, natural way, I made the difficult decision to step away and lead Arthur’s language journey myself as an unhomeschooling parent. We use a blend of homeschooling and unschooling, where Arthur is never required to participate in online classes but is always invited to engage at his own pace.
This shift solidified after I attended a workshop by Amanda Merlin, hosted by Meghan Ashburn (Not An Autism Mom). It gave me the courage to presume competence, recognize potential, and advocate for a robust communication system.
The Mirror: Recognizing My Own Identity
Around this time, the psychiatrist who diagnosed Arthur asked a question that changed my life:
“Does anyone in your family have ASD or ADHD?”
That question echoed as I filled out Arthur’s sensory profile. As I checked boxes—my heightened rejection sensitivity, need for movement, processing delays — I realized I was checking every single one for myself too.
Over time, I came to self-recognize as an autistic adult, an ADHDer, with OCD, anxiety, dyspraxia, auditory processing differences with delayed emotional response, rejection sensitivity dysphoria, and a PDA (Pathological Demand Avoidance) profile with more of an internalized presentation.
Why Self-Recognition Is Valid
I intentionally use the term self-recognized, and I do so with confidence:
Limited Training: Many professionals receive minimal education on autism—sometimes no more than a single semester.
Systemic Bias: Diagnostic criteria often rely on outdated stereotypes and are shaped by gendered and racial bias.
Financial Barriers: Formal assessments can cost anywhere from $1,000 to $8,000, making them inaccessible for many families.
Depth of Lived Research: My understanding is grounded in years of specialized courses, webinars, and—most importantly—the lived experiences of autistic and nonspeaking people.
My neurodivergence allows me to recognize patterns in Arthur’s stalls and leaps. My dyspraxia helps me understand his motor planning struggles. My rejection sensitivity made me realize that advice to “ignore” him during meltdowns was not neutral — it was a rejection of his humanity.
Redefining the Goal: A Communication Toolbox
Our goal is no longer normalization. It is access. We have moved away from the idea that speech is the only measure of success and toward a multi-modal world where Arthur can express himself fully, in whatever form he chooses.
As I shared in my webinar, Explore AAC with Me, I believe in providing a robust variety of ways for him to be understood. I am filling his communication toolbox with:
Electronic-based AAC: Modeling on his AAC device to provide a robust vocabulary for complex thoughts.
Backups: A communication book and PicsSeePal for the pool or travel, ensuring he is never without a voice.
Sign Language: Modeling Makaton and ASL.
Pictures, Gestures, Gesture Dictionaries, and Environmental Cues
We prioritize co-accommodation and emotional regulation, recognizing the exhaustion that comes from navigating an ableist world. By providing these tools, we aren’t trying to correct him; we are building a bridge. You can see these tools in action and learn more about our journey in my full webinar here: Explore AAC with Me
Conclusion: Planting Seeds of Change
One to two years after leaving the clinics, I shared my webinar with my former therapists. The centre where the second therapist, who introduced PECS, worked never responded. The first therapist later began learning Makaton. It was a bittersweet victory.
It showed me that what was once dismissed as overthinking was, in fact, insight. And it reminded me that even when we are not believed, our advocacy plants seeds that change how the next child might be treated.
Disability is not a tragedy; it is an identity. It doesn't define a person completely, but it is an essential part of who they are. While disability itself is a different way of being, you do feel challenged and unsupported in a non-accommodating environment.
Our goal is not to change the person, but to accommodate, modify, or do both to the environment—so every voice, including the quiet ones, is heard. By giving Arthur access to communication tools, I am not trying to fix him; I am ensuring that he grows up proud, safe, and empowered.
If you found this reflection helpful, I have written a series of deep dives on these themes for Bambino Therapy, I share the raw heart of parenting in Loving Arthur Means and cover the practical unlearning required for life with a PDA neurotype: from PDA and Equalizing, to Strewing, Listening beyond words, Breaking Communication Barriers, Thinking Aloud, and Access with Autonomy