What we talk about when we talk about "bad outcomes"

Parent expectations, developmental concerns, and why the way we talk about these things matter

I can’t find the original author, so apologies to the person I am (mis)quoting, but I recently saw this sentiment on Twitter:

“Therapy is undoing all the expectations about the type of person that your parents hoped you would become.”

As a therapist, I have a lot of intellectual thoughts about the accuracy of this statement. As a parent, let me just say: Woof. This hit right in my anxieties. While it's incredibly meaningful (and fun!) to learn all about this new family member and imagine who they might become, it’s also terrifying to live in the liminal space of having so much control over a person (“How will I screw him up?!”) while simultaneously feeling like you have no control at all. One day, this little baby blob who can barely sit up will be a walking, talking person with secrets, agency, and independence. I remember being pregnant and feeling a mixture of gratitude and loss whenever I thought about how, after my baby was born, my body and my choices wouldn’t be the main things responsible for keeping him alive anymore. Those mixed feelings only seem to amplify as he grows.

A few recent headline-grabbing publications have made me consider the ways we talk about science related to our children’s future outcomes. JAMA Pediatrics published a small, promising randomized controlled trial on an early parenting intervention to reduce the likelihood of young children receiving an autism diagnosis¹. Nature Reviews Endocrinology published a commentary from a group of researchers who argued that pregnant people should be more cautious when taking acetaminophen (Tylenol), summarizing research from human and animal studies that suggests taking this medication while pregnant may increase the likelihood of some developmental concerns in children².

I’m not going to dive into the specifics of these articles (though they are interesting!). Instead, I want to use them to have a broader discussion around the ways we talk about our behaviors, our choices, and how they relate to “good” versus “bad” outcomes for our children.

On the one hand, developmental concerns and mental illness are associated with disability, distress, and difficulties, things that most (if not all) parents would like to avoid their child experiencing. We don’t want our children’s lives to be any harder than they have to be. If you’re reading this newsletter, I’m taking for granted that you care about mental health. We need better, evidence-based, accessible treatments for these concerns, as well as a fuller understanding of how biology and environment (including parenting choices) intersect in increasing or decreasing the likelihood of these concerns.

On the other hand, when scientists, clinicians, and journalists only write about developmental and mental health concerns as if these are irrefutably “bad outcomes” that all parents would want to “prevent” or “reduce a child’s risk” for, it can trivialize and insult the experiences of people who live with those concerns. Such language can perpetuate discrimination against people who don’t want their experiences to be diminished as solely a disease to be eradicated. Notice even the difference in how it sounds to talk about “risk factors for autism” (risk has connotations of being objectively negative, like how we talk about risk factors for cancer) versus “factors that increase the likelihood of a diagnosis of autism.” While subtle, changes in language like these are supported by autistic people and scholars as alternatives to more ableist phrases³.

Such ableist language abounded in discussing the recent JAMA Pediatrics study, with some news outlets talking about the hope of “curing” autism. This is unfortunate, because that's not what this study is about, and interventions to help improve the quality of life for neurodiverse folks are incredibly important. However, it is just par for the course for how autistic people are generally treated in our culture. Take, for example, the relationship between the anti-vaccine movement and concerns around the likelihood of a child being diagnosed with autism. Due to a since-retracted, fraudulent, unethical, and all around terrible 1998 study by Andrew Wakefield (a now-discredited former physician) that suggested that vaccines increase the likelihood of children developing autism, the anti-vaccination movement was granted “scientific evidence” for their beliefs. Regardless of that bad study and all the valid research that has come afterwards that shows ZERO support for any link between vaccines and autism, there remains the reality that some parents would rather their children and other people’s children suffer from preventable illnesses and potentially die than be autistic, an experience that millions of children and adults experience in the United States alone. This is incredibly demeaning towards autistic individuals, and they have bravely not been quiet about it.

While this is an extreme example, consider the other paper I brought up that summarized literature on the relationship between taking acetaminophen in pregnancy and likelihood of a future autism or ADHD diagnosis (among other outcomes). Here, I’m going to pick on Emily Oster a bit, who wrote about a different study on this relationship a few months ago (link here). While she (helpfully) discussed the methodological concerns related to this specific study, throughout her writing it’s taken for granted that autism and ADHD are “bad outcomes” that one may want to prevent to the extent that a pregnant person decides against taking Tylenol. Now, Oster isn’t a doctor or psychologist, nor do I believe a single newsletter can cover all the nuances around this topic. However, I remember reading her post and wishing that there was some passing acknowledgment around the sheer breadth of experiences that autism and ADHD diagnoses cover, that these may not necessarily be conditions that some parents want to against-all-odds prevent, and that, hey, there are probably lots of readers of this newsletter who have experienced these conditions in themselves or their families.

Further, without having the space (or the expertise) to go into this in great detail, I’m very skeptical around the idea that one specific prenatal factor that (I’m assuming) many, many pregnant people experience (taking Tylenol) actually increases the likelihood of a child being diagnosed with ADHD in particular - a complicated constellation of various difficulties with inattention, impulsivity, and hyperactivity. Mental health diagnosis is not a perfect science; sociodemographic factors play a role, as does good-old-fashioned bias. There are entire books written about the over-diagnosis of ADHD in the United States, arguing that factors such as state-level educational policies play a role in why ADHD diagnosis prevalence differs from state-to-state (see Further Reading). Additionally, I am generally wary of sweeping recommendations like these as they bring with them the baggage of implicit blame placed on pregnant people and especially mothers for the mental health of their children. There is some pretty terrible historical context for (incorrectly) blaming mothers for concerns such as autism and schizophrenia in their children (see: the “refrigerator mother theory”). Even though no one is saying, “You’re a bad mother if you take Tylenol,” it’s the implicit message behind some recommendations that may fail to strike a balance between the concerns of one person (e.g., a pregnant person’s pain) with another (e.g., the future developmental outcomes for a fetus).

This is not to say that ADHD is not a “real” (whatever that means) or serious concern. There appear to be large genetic and prenatal factors that affect the likelihood of a child experiencing attention or hyperactivity difficulties. And of course parenting choices matter for a child's health and wellbeing. However, mental health diagnoses do not occur in a vacuum. They should not be considered as immutable facts, life sentences based on a single (relatively) small decision a parent made while pregnant or after. That’s just not the way things work. We currently don't have the evidence to back up such claims, so we should stop talking about mental health concerns in those ways.

In addition to asking ourselves questions like, “Should I take Tylenol if I’m pregnant?”, we should also consider why are we asking ourselves this question. How are we, as parents, defining “bad” versus “good” outcomes? And what do our answers to this question say about us and our expectations we have for our children’s futures?

It’s important to remember, like all things with parenting, that these decisions are incredibly personal and context-dependent. We’re all doing the best we can, making the best decisions we can with the information we have for ourselves and our families. Informed people will inevitably make different decisions. One can value neurodiversity in all its forms and still want their child to be the healthiest and happiest they can be. It’s our jobs as parents to accept the things we cannot control, make informed decisions based on the things we can, and, regardless of the outcome, embrace our children for who they are.

Further Reading

• Matthew Rozsa, an autistic journalist from Salon.com, discusses his perspective on the JAMA Pediatrics article, along with an interview with one of the study researchers: A Controversial Study Claims Researchers Can “Treat” Some Autism Symptoms in Early Childhood.

• A 2019 Buzzfeed article highlighting members of the autistic community’s experiences related to the anti-vaccine movement: Autistic People Say Anti-Vax Misinformation Is Only Making Matters Worse.

• If you know anything about me, you know I’m obsessed with Emily Oster - I don’t know how I would have gotten through my pregnancy without her books. My criticisms come from a place of deep respect. To her credit, she is great at acknowledging the problem with how sweeping medical recommendations can insult the intelligence of pregnant people and their ability to make their own informed decisions. See, for example, her recent newsletter on the acetaminophen commentary and the Boppy Lounger recall: A Pre-Halloween Scare for Parents.

• The ADHD Explosion: Myths, Medication, Money, and Today’s Push for Performance by Stephen Hinshaw and Richard Scheffler discusses the recent spike in ADHD diagnoses in the United States and some of the misconceptions around this condition, including how sociodemographic factors play a role in diagnosis. For complete transparency: I taught with Stephen Hinshaw during graduate school and know him personally. But he’s great and he knows his stuff!

• These discussions also relate to how we talk about prenatal genetic testing. For a fascinating discussion around the complicated questions this raises, specifically as it pertains to people with Down Syndrome, check out this piece from The Atlantic: The Last Children of Down Syndrome.

1. Whitehouse, A. J., Varcin, K. J., Pillar, S., Billingham, W., Alvares, G. A., Barbaro, J., ... & Hudry, K. (2021). Effect of Preemptive Intervention on Developmental Outcomes Among Infants Showing Early Signs of Autism: A Randomized Clinical Trial of Outcomes to Diagnosis. JAMA Pediatrics, e213298-e213298. https://jamanetwork.com/journals/jamapediatrics/article-abstract/2784066

2. Bauer, A. Z., Swan, S. H., Kriebel, D., Liew, Z., Taylor, H. S., Bornehag, C. G., ... & Kristensen, D. M. (2021). Paracetamol use during pregnancy—a call for precautionary action. Nature Reviews Endocrinology, 1-10. https://www.nature.com/articles/s41574-021-00553-7

3. Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18-29. https://www.liebertpub.com/doi/full/10.1089/aut.2020.0014