A Call for More Inclusive,Patient-Centered Nomenclature for Antipsychotics in the Treatment of Autism Spectrum Disorder

NeuroDevelopments: A Historical Lens on Child Neurology

This is part of a monthly editorial series discussing current issues affecting children and their caregivers with thoughtful consideration of the history of pediatric medicine. If you are interested in contributing, please reach out to the editor of this journal.

In 1943, Dr Leo Kanner published “Autistic Disturbances of Affective Contact,” the first article to describe what we now know as autism spectrum disorder (ASD) as its own condition.^1,2 It was initially not understood how to support those with ASD: some of the children in Kanner's case reports were institutionalized for their behavior. ¹ ASD was also originally confused as a symptom of schizophrenia and was labeled as such in the first version of the DSM in 1952. ² In the 1970s, ASD began to be studied as a condition distinct from schizophrenia. This coincided with increased focus on behavioral interventions and pharmacologic treatments rather than institutionalization.^3–6

The use of the medication class known as antipsychotics in ASD treatment was first investigated with the typical antipsychotic haloperidol in the 1970s, which was effective in reducing behavioral symptoms but had significant side effects.^4–6 Atypical antipsychotics were explored in the 1990s, with the atypical antipsychotics risperidone and aripiprazole proving effective in treating aggression and irritability in ASD.^7–9 These are the only 2 medications approved by the US Food and Drug Administration (FDA) for patients with ASD. ¹⁰

There has been discourse surrounding the nomenclature of antipsychotics since the introduction of chlorpromazine in 1952. ¹¹ Throughout the 1950s, “tranquilizer” and “ataraxic” were used to refer to chlorpromazine and similar drugs. ¹² “Ataraxic” and “tranquilizer” stopped being used because they incorrectly implied the medications created calmness and happiness. “Antipsychotic” gained popularity in the 1960s and is now the most used term for this drug class. This language progression illustrates the evolving understanding of these drugs and the possibility for continued nomenclature change. Antipsychotics are also used with nonpsychotic conditions, such as for mood stabilization in bipolar disorder and behavior regulation in ASD.^13,14 Just as with “ataraxic” and “tranquilizer,” “antipsychotic” needs to be adjusted because it implies the medications are only meant to combat psychosis. When antipsychotics are prescribed in ASD, it is usually to manage irritability and aggression, not psychosis.^6–8 It is confusing for families to hear clinicians recommend an antipsychotic for their child with ASD who likely has no psychosis symptoms, creating barriers to effective treatment. This confusion is compounded when families read about the medication and find it consistently labeled as an antipsychotic, even when prescribed for ASD. We advocate for a change in the terminology used for medications available to the ASD patient population.

Patients with psychotic and nonpsychotic disorders have expressed concern about the term antipsychotic. In one study of patients with schizophrenia taking antipsychotics, 35% felt the medications were linked to stigma and reduced self-esteem. ¹⁵ In a study of patients with bipolar disorder, significantly more participants had a negative reaction to the idea of their health care provider prescribing them an antipsychotic (25%) as compared to a mood stabilizer such as lamotrigine or lithium (6%). Forty percent of participants reported delaying starting an antipsychotic, vs only (22%) delaying a mood stabilizer. ¹⁶

In our clinical practice with patients with autism, we have received preliminary feedback from patient families and guardians regarding their experiences with antipsychotics. Out of 12 parents or guardians surveyed, 8 reported feeling the antipsychotic label was misleading, and 5 reported that the label affected their decision to start the medication. Six of those surveyed supported a name change to “Behavior regulating medication” or “Behavior stabilizing medication.” The hesitancy surrounding the antipsychotic label seen from our patient population highlights the need for more research on this subject to better understand the opinions of patients with autism and their caregivers.

There is precedent for this type of terminology change. Patients with epilepsy are prescribed medications that, for years, were referred to as “anti-epileptic drugs.” The semantics of this name suggest the drug treats epilepsy itself, but it targets the associated seizures, not the underlying disorder. ¹⁷ This prompted advocacy from the epilepsy community for improved nomenclature to describe these medications.^18–20 These drugs are now called antiseizure medications, which more precisely reflects their purpose and mechanism of action. Medication names should describe what they do, helping patients and their loved ones better understand treatment options and make more informed decisions. This is especially pertinent in child neurology, where parents must make care decisions for their children while navigating new, overwhelming diagnoses.

In ASD care, risperidone and aripiprazole should be described using nomenclature that reflects their ability to stabilize behavior, helping providers, patients, and advocates feel comfortable and informed in treatment decisions. Exploring the use of precise, accurate, and nonstigmatizing terminology is vital to ensuring that the language used in ASD treatment helps rather than harms and facilitates the best care possible for patients.