Neurodivergence Behind the Mood Disorder Mask

As I walk through the entrance of a building that still feels like a prison, I visibly shudder hearing the door clang shut behind me as I’m buzzed in. The hallways flicker with fluorescent lighting that still gives me a headache, so I stare down at the unsightly linoleum floors as I push forward, although my nervous system is screaming at me, “It’s not too late to leave!” 

The last time I was here, I was a terrified, angry, overmedicated child lost in a system that seemed to be against me. Now, my work as a nurse case manager has led me back to a place I never wanted to revisit: the only county hospital accepting those admitted against their will. I’m here voluntarily, doing work I love and believe is urgently needed: helping others who share my diagnosis of autism spectrum disorder. 

I’m here for my client, Andrea, who has autism along with several commonly co-occurring conditions, including Tourette syndrome, OCD, and bipolar disorder. Despite months of mood stability, she somehow found herself here.  

Andrea has tics that include grunting and blinking, which worsen when under stress. She also struggles with eye contact and speaks in a tone and pitch that can be interpreted as dismissive, when in reality, she’s using her natural voice and communication style. Andrea was elated to be offered a job as a cashier at a local grocery store but had an unfortunate outburst a few months after she’d started.  

She’d been caught off guard when a customer inquired whether she was “on drugs,” and when she didn’t respond right away, the woman had asked to speak to her manager. Frustrated and fearful she’d lose her job, she banged her hands fast and hard against the conveyor belt, and eventually against her own head, as many people on the spectrum do when they feel overwhelmed, fearful, or unable to control their frustration. This act led to police involvement, a detained drive to the ER, and resulted in her hospital stay. 

When I found out about the circumstances that led to her admission, I knew I had to be there to explain her history during her treatment plan meeting. Unlike my hospital experience a decade before, Andrea will have someone to advocate for her who’s informed about neurodiversity. As I walk into the meeting with the therapist and psychiatrist, I feel my heart drop when I recognize a familiar face. It’s the same provider who wrongly told my parents, “It’s unlikely she’ll ever be self-sufficient.”  

The psychiatrist, busy writing his notes, briefly glances at my face as he reaches to shake my hand, then quickly does a double take and asks, “Have we met?”  

I sheepishly say, “Yes, we’ve actually met here,” and I let him connect the dots. 

During the meeting, I carefully explain Andrea’s history of sensitivity to medications, and the importance of dosing any new medication “low and slow.” I educate them on the fact that her outburst was not the result of mania, but of severe frustration, and encourage them not to stop her very effective antidepressant, as this has taken her from being unable to leave her house to maintaining a part-time job for months until this incident.  

After the meeting, I check on Andrea. She’s lying in the fetal position, back toward the door, sobbing. I knock, and she shouts, “Please, please, don’t turn on the lights!” 

I respond with: “It’s me. I understand, the lights bother me too.” I tell her I can put a note on the door asking others to warn her before turning on the lights. She immediately asks if she lost her job, her regret palpable. I try to reassure her as she lies in her hospital bed, but knowing Andrea’s fear of unknown routines, I spend most of the visit explaining in detail the hospital schedule and the plan for her to be discharged after a 72-hour hold. 

Autism and Medication  

Like many patients on the spectrum, Andrea’s sensitive nervous system makes her more prone to adverse or paradoxical reactions to medications. Unfortunately, there’s very little research on how autistic individuals respond to medications.  

Autism is not a psychiatric condition and does not automatically require medication but co-occurring mental health conditions—often more than one—impact most neurodivergent individuals. The only two FDA-approved medications for autism are Abilify (Aripiprazole) and Risperdal (Risperidone)—but they are only approved for “irritability,” and I often wonder why irritability alone warranted the research.  

It’s not widely recognized that autistic individuals are often misdiagnosed with bipolar disorder, in part because they can be at higher risk for activation—a particularly distressing reaction that’s often mistaken for mania and can occur in response to antidepressants at high starting doses where patients feel irritable, agitated and restless. A brain that’s sensitive to light, sound, texture, and surrounding activity may also be more sensitive to medication. Autistic patients who are given a starting dose of any medication that’s too strong can have catastrophic responses, including increased anxiety, suicidality, or even severe sedation, restlessness, or painful muscle spasms. 

For years, I saw this with my very own eyes as a nurse overseeing clinics for autistic clients with co-occurring mental health conditions. In this capacity, I worked alongside four incredible psychiatrists who were confident enough to treat a complex population without formal guidance, and they taught me about the potential risks of under or over-medicating clients. The doctors would jokingly call me “Dr. Lindsey” and often ask what I thought we should do when things went wrong after medication changes. Doing this work was, as one psychiatrist described it, a “baptism by fire.” 

I loved my unique position there and took pride in assimilating autistic patients back into the community. Helping them find adequate health care, mental health treatment, and job opportunities with appropriate accommodations was deeply rewarding. In a marginalized and underserved community, I was a familiar face who understood their struggles on a level others couldn’t. My caseload ranged from adults who refused to wear winter coats in 0-degree weather (due to the texture) to others who could only drink one flavor of juice because the taste of any other fluid sent them into a panic. 

When one of our psychiatrists retired without significant notice, I searched fruitlessly to find an adolescent psychiatrist willing to treat patients on the spectrum. I loved my job, but I knew I could make a greater difference as a provider. So I cut back on my hours and went back to school. 

The Experience that Became a Calling

Now a nurse practitioner, I realize most of the mental health providers I work with are unaware of how intensely neurodivergence impacts an autistic person’s mental and physical health status. And I have firsthand experience with how damaging inadequate mental health care can be for individuals on the spectrum.  

As a child, school refusal started for me due to bullying. I had no idea how to socialize with my peers, which led to significant social anxiety. I underwent psychological testing with the school psychologist, who told my parents I was oppositional defiant and referred me to therapy and eventually to a psychiatrist. Throughout my childhood and into adolescent years, my parents took me to various specialists, while the school board called in truancy officers who threatened me with jail. From age 10, I was lost in the web of psychiatric treatment. I’m intimately familiar with the medications I prescribe because at one point or another, I took most of them. 

By the time I was 16, psychiatric visits were a rushed 10-15 minutes—me shutting down, my parents begging a doctor to help with my behavioral episodes, which were quickly misdiagnosed as bipolar disorder. My frequent interrupting, rapid speech when I was excited, meltdowns when plans changed, severe social anxiety, and late nights spent absorbed in my special interests were all interpreted as signs of mania. None of the mood stabilizers or neuroleptic medications I was given ever seemed to help. I only got worse, and my “behavior”—mainly school refusal—spiraled further out of control. As that happened, my providers increased medication doses, which needless to say, did not help. 

My previous hospitalization occurred when I spent a night on a cold park bench instead of in my bed, because I chose the peace of the fall wind over the agony of attending another day at an overcrowded school. The police were involved, and I was hospitalized for “running away.”  

By 17, I’d sat across the desk from at least eight different psychiatrists, two psychologists, and four therapists. Never did I feel a connection with any of my providers—not because I wasn’t interested in treatment, but because the entire world felt so overwhelming, and I couldn’t explain why small, everyday things seemed unsurmountable. I lived my life in fear and confusion.  

It wasn’t until one very inquisitive psychiatrist, after talking to my mother and me for well over an hour—most intakes were never more than 30 minutes—shared a new perspective none of the previous helpers seemed to consider. “I don’t believe Lindsey is bipolar, I think she’s Autistic.” My mom, shocked, asked him what he meant. He bluntly stated, “I think she has autism. Take this for sleep. Everything else, I’m stopping.” 

“Autism?” my mom responded in disbelief. My little sister was diagnosed with autism, but hers had been suspected at age three due to developmental delays. All my milestones were early. Never had anyone related my difficulty verbalizing my feelings to her inability to speak or her constant refusals to my inability to go to school. 

I truly believe my life was saved by this psychiatrist who was informed about high-masking autism. His assumption was correct: the reason the meds weren’t working was because I’m neurodivergent, not bipolar. My long rambling about special interests, extreme social anxiety, fear of leaving the house—all of this was explained by the same disorder that had caused my sister’s severe disability. Similar to her, I was just wired different. 

My parents were hesitant but agreed to wean me off all my medication and try a small dose of a sleeping pill. With accommodations, instead of overmedication, I found my spark again. I graduated high school early, through a community college program. I continued my studies, transferred to a state university, and graduated with a bachelor’s degree in nursing with a 4.0 GPA. Most people would be proud of this. For me, learning facts or taking tests was never challenging. My struggle has always been with processing the many demands of everyday interactions, something I still sometimes find difficult. 

The Cost of Being Missed

By the time Eliza found herself in my office, she told me she felt completely defeated by her search for a prescriber who was familiar with neurodiversity. She plopped down on my couch, crossed her arms, and stared at the floor, almost hyperventilating. When I asked her how I could help her, she shouted in frustration, “Maybe you can help me understand what’s going on, because no one else seems to know!” I felt a pit in my stomach. It was not a gentle introduction.  

Typically, when someone begins an intake by listing their frustrations with multiple providers, it’s easy to assume they are “difficult” or “too demanding.” But I took a deep breath, smiled, and worked to quiet my own judgment so I could see the situation as objectively as possible. “Let’s talk about what brought you in,” I responded.  

Eliza was diagnosed with OCD and social anxiety as a teenager. She religiously kept receipts and records of her days, filling her home with countless binders of information. She tells me about her ongoing struggle to make friends, her tendency to unintentionally offend coworkers, and her history of being fired from multiple jobs, despite vehemently denying any wrongdoing or mistreatment of others.  

Her depression has never improved with any of the medications she’s tried, some of which have left her body with permanent damage. The high dose lithium she once took, normally very effective for bipolar disorder, has left her with thyroid and kidney damage. This was challenging considering her diet was already limited by her sensitivity to certain textures, and her insurance status was constantly changing due to her inability to keep a job. All of this perplexed her.  

She teared up as she stared at the floor while handing me a stack of papers. I noticed her nails had been bitten down and her cuticles were covered in scabs from being gnawed on. The papers were two psychological evaluations, containing the Autism Diagnostic Observation Schedule (ADOS) test which is considered the “gold standard” of screening for autism, from two psychologists she’d gone to see after her psychiatrist had declared that he didn’t know what to do with her. 

The first assessment was negative. The summary explained she was struggling with bipolar disorder and OCD, not autism. The second assessment, using the same diagnostic test, reached a different conclusion: major depressive disorder, social anxiety, and autism spectrum disorder, level 1. How do two “gold standard” screenings get such different conclusions?  

The first evaluation stated that Eliza had a “preoccupation with being on the spectrum.” The psychologist considered it suspicious that she came to the assessment with a binder organized by DSM-V sections, complete with bullet-pointed examples of how she met the criteria. Rather than seeing preparation, the psychologist saw malingering. What she failed to realize was that Eliza loved binders and found comfort in organizing every detail of her life.  

So Eliza decided to leave the binder at home when she got a second assessment. Five thousand dollars later, she’s in my office, explaining, “I just want help!” It saddens me that medical providers often unknowingly deepen the trauma of someone already struggling to find answers within a web of referrals, diagnoses, and stigma. 

I ask Eliza when she first thought she was autistic.  

“When I first saw a video about women with autism,” she shares. “I thought, that’s it! This is what’s wrong with me!” She excitedly read as much as she could about the condition, staying up all night with newfound relief and self-understanding. She had no idea how hard she was about to fight to find a mental health provider who agreed.  

Her psychiatrist adamantly disagreed, telling her the late-night research was textbook mania. She increased her dose of the medication that caused sedation. Eliza reluctantly took the medication but made an appointment in four months with a psychologist for an evaluation. 

Eliza grew up in a Latino household where mental health was not openly discussed. She shares a lot of similarities with her “quirky” grandmother, including her distinct palate for foods, sensitivity to noise, and an intense urge to collect and organize items like newspaper articles and receipts. She cries as she explains her fruitless efforts to make friends at school and work. She was consistently bullied for reasons she couldn’t understand. 

Eliza had called many offices before finding mine. She was visibly relieved when I told her I agreed she was Autistic without a doubt, and we discussed options for care. 

As a psychiatric nurse practitioner specializing in neurodiversity, I see appropriate therapy and support as the first step toward understanding and self-regulation, followed by treatment of co-occurring mental health conditions. Some of the most meaningful interventions don’t come in the form of medication, but through accommodation and coping skills developed through therapy. Finding these resources is incredibly difficult, as there are not many therapists who feel confident treating Autistic clients, and even fewer psychiatric prescribers willing to manage their medications. 

I do end up prescribing a medication for Eliza—a low-dose antidepressant for anxiety and OCD, and a beta blocker that’s been shown to help with “fight or flight” symptoms that can occur during social interactions or when overstimulated. I also recommend NAC, a supplement that’s been shown to help with rumination and skin picking.  

We go over coping strategies that work for her, like box breathing (a simple strategy of breathing in and out in counts of four) and Little Ouchie pain fidgets (small rings covered with spikes that can trigger a release of endorphins to calm and soothe distress) when she feels overwhelmed. I also write a letter asking for accommodations for Eliza at work, including increased ability to work from home. A month later she comes back for a follow-up, sharing that her company let her go. Sadly, this is not the first time a patient has told me they were fired or laid off from a job after requesting accommodations.  

Although she’s in the position of having to search for a job again, Eliza’s outlook on life has improved significantly. Her fingernails are growing back, and she’s feeling more confident in her interactions with others. She’s given herself more alone time and focused on self-care. She’s stopped shaming herself for the things she can’t change and began embracing her love of special interests, including organizing binders of information. 

Every day, neurodivergent people suffer because of a lack of access to effective healthcare. The recent prevalence of autism per the CDC is believed to be 1 in 31 people. That number hasn’t climbed because of an epidemic, overdiagnosis, use of Tylenol, or vaccines. It was lower in decades past because so many neurodivergent people have slipped through the cracks in traditional mental health settings. 

No Test Diagnoses Autism

The ADOS assessment was developed in 1989, at a time when Asperger’s was still used as a diagnosis for so-called “high-functioning autism.” Many now view the term, “high functioning” as an invalidating misnomer, given the herculean effort many expend to maintain a job, sustain a social life, and function in a neurotypical world—often at great cost to their mental health.  

Although the ADOS has been updated to reflect changes in DSM-V criteria, criticism of the ADOS-2 centers on high rates of false negatives in Autistic adults who camouflage, and potential racial and gender biases. The ADOS-2 is expensive and time-intensive to administer. As a result, waiting lists grow months to years long, and many people are left seeking answers from therapists and prescribers who may have little formal training in autism. 

The ADOS-2 is a valuable tool for children and nonverbal patients. Autism doesn’t always look the same, and not all tools are appropriate for each patient. Only using one or two screenings for a population of people with very different presentations doesn’t translate to neurodivergent-affirming care and most providers don’t realize that a test like the ADOS isn’t required to diagnose autism. No single test diagnoses autism: clinicians do. 

Why is it that most providers feel comfortable diagnosing ADHD—a complex neurological mental health condition that’s widely treated—without complex psychological evaluations, whereas the needs of patients with autism remain largely unmet? 

Autism doesn’t always look like the stereotypes portrayed in the media. People on the spectrum can look just like anyone else, while silently struggling every day to function in a system that too often refuses to recognize their needs. 

Approximately 10–15 percent of people with bipolar disorder are estimated to die by suicide, yet Autistic individuals face a similarly elevated risk. It makes me wonder how many neurodivergent adults have been lost within that statistic, never finding relief or even a name for the emotional turmoil they carry. How many undiagnosed Autistic patients are searching for answers behind the mood disorder mask—misunderstood and misdiagnosed, harmed by a system meant to protect them. 

 If I could go back in time to that scared, over-medicated, misdiagnosed 16-year-old girl huddled in an oversized hoodie on a park bench on a cold November night, I would tell her how strong she is. I would tell her that if her doctor said she’s a hopeless case, she should tell him to be careful—one day she may be his colleague.  

I wish her journey had been less grueling, but I’m not ashamed of her for coping the only way she knew how. This dark, difficult time will be her survival story one day. Her resilience will make her a strong advocate for those who are dismissed, unsupported, and unseen. Most of all, I would tell her to keep going and do what she was called to do: heal, as a provider and as a patient.