Understanding Autism Spectrum Disorder Epidemiologically and Theologically

Last spring, Secretary of the U.S. Department of Health and Human Services Robert F. Kennedy, Jr. launched a “massive testing and research effort” to determine “what has caused the autism epidemic.” He added: “We’ll be able to eliminate… exposures.”

While I’m in favor of further autism research, this announcement struck me as odd for several reasons:

1. It suggested that autism is an acute condition calling for an emergency response, like we would have during an infectious disease outbreak or a natural disaster;
2. It declared that autism is facing an epidemic, meaning a rapid and atypical increase in the number of cases;
3. It assumed the causes of autism are preventable; and
4. It insinuated that all autistic individuals are severely disabled, and in some way a burden on society and their loved ones.

As a chronic disease epidemiologist, I’d like to provide guidance on how to understand these assumptions in sequence.

1. Is autism spectrum disorder an acute condition, calling for an emergency response?

An acute condition is one with a severe and sudden onset, and which lasts for a short time. Strep throat is a good example of an acute condition: it comes on suddenly and typically lasts a week or less.

In contrast, autism spectrum disorder (ASD) is a complicated neurological condition that emerges during early development of the brain, typically presenting between ages two and four. It presents with challenges with social communication, restricted interests, and repetitive behaviors.

ASD does not meet the definition of an acute condition. Unlike acute conditions, ASD is a lifelong condition that can be managed but not cured.

2. Is autism currently an epidemic in the U.S.?

How are rates of autism monitored?

An epidemic is a rapid and atypical increase in the number of cases of a particular condition. To determine whether there is an “autism epidemic,” we can begin by comparing past rates of autism diagnoses against current rates.

We can do so through the work of the Autism and Development Disabilities Monitoring (ADDM) Network. At sites across the United States, the ADDM Network tracks the number of children with ASD by gathering information from medical and educational records.

In 2022, the ADDM reported 32.2 cases of autism spectrum disorder per 1000 persons. This number is four times higher than it was 20 years ago.

What is the cause of this increase?

While this increase may seem alarming at first glance, it is widely accepted that it largely reflects changes in the definition used for ASD and the importance placed on ASD by society and educational systems.

Since it was first recognized as a condition in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the definition for ASD has been broadened several times. This included combining a cluster of related neurological disorders into one disorder, relaxing the age of onset, and better classifying the presentation of autism in girls and children of color, leading to more accurate, but higher, numbers.

With broader criteria, medical and educational institutions began to screen for ASD more aggressively. For instance, California has the highest recorded prevalence of ASD among ADDM sites. This may result from two key factors:

• Regional centers that provide evaluations and service coordination for persons with disabilities and their families.
• Initiatives like the Get SET Early Model, which trains pediatricians to screen and refer children for assessment as early as possible.

Increases in insurance reimbursements for services may also play a role in increased ASD diagnoses. Pennsylvania, a state with Medicaid policy that includes care for autistic children regardless of parents’ income, is the site with the second highest prevalence among children aged eight years.

Aside from systemic changes, we should recognize that growing public awareness of autism may also motivate more parents to seek evaluation.

Is autism an epidemic?

We have observed increased rates of autism diagnoses over the past two decades. However, much of this rise can be accounted for by broadened definitions, growing public awareness, and better screening—all of which allows us to identify cases of autism that may otherwise have gone undiagnosed.

3. Are the primary causes of autism preventable, external exposures?

ASD is a complex cluster of related conditions that still need to be better understood.

Unfortunately, that complexity, coupled with the concerns of parents, makes ASD a fertile ground for misinformation.

Genetic or inherited causes

The current body of evidence strongly indicates a genetic or inherited cause for ASD.

Studies of identical twins show that when one twin is autistic, the other twin is also autistic between 60% and 90% of the time. Another study conducted in Sweden, which examined 37,570 pairs of twins, found that 83% of autism diagnoses could be attributed to genetics.

What does the evidence show about acetaminophen use?

In recent months, acetaminophen (Tylenol) use during pregnancy has been raised as a potential cause of autism.

This idea stems from the fact that consuming certain pharmacological products during pregnancy is known to affect the developing fetus, what with their rapid brain development and incomplete blood-brain barrier.

However, studies supporting a connection between acetaminophen use during pregnancy and autism have significant biases, given how difficult it is to accurately ascertain the medication consumed by the mother, at what time in her pregnancy, and at what dose.

In contrast, several high quality studies have refuted such an association. A study of 2.5 million children in Sweden that included sibling control analysis—comparing siblings so as to control against genetic and environmental factors—did not find an association between acetaminophen use during pregnancy and a child’s risk of autism.

What does this all mean?

The cause of ASD appears to be mostly genetic, with some potential environmental causes as well.

In our work to better understand these causes, it is not a good use of resources to repeat studies on well-established scientific evidence or chase popular beliefs about supposed causes. Nor is it helpful to run many rounds of analysis on a dataset until something looks like a causal association (a process called p-hacking), since such findings often reflect statistical noise rather than genuine causation.

Instead, we should turn to the classic scientific approach to research. Proposed research should build on what is already known and identify where deficiencies exist. These gaps in our understanding form the basis for new hypotheses, which in turn result in new and constructive research projects.

This is the scientific method, and it’s what’s needed to truly improve our understanding of the causes of autism.

4. What are the health and support needs associated with ASD?

Secretary Kennedy’s statements insinuate that most or all autistic individuals are severely disabled; this is an inaccurate representation.

ASD presents in a wide range of severities; sometimes with cognitive impairment, and often not.

Many individuals of extraordinary intelligence and skill experience ASD. 14% of the ASD population graduate from college, compared to 32% of the general U.S. population. Of interest to BioLogos readers, 34.3% of young adults with ASD who complete college major in STEM related fields, higher than the 22.8% of students in the general population who do.

These statistics don’t define anyone’s value, but they do illustrate the wide diversity within ASD.

Some autistic individuals face challenges with important social skills like social communication, shared interests, and atypical repetitive behaviors. This can be difficult for autistic individuals, and the families and friends who love them.

The majority of autistic individuals, who are on the moderate to mild scale, need early intervention to improve socialization. And some individuals with significant cognitive impairment, along with physical disability, will need accommodation and support.

It is important that people have a reliable and accurate understanding of neurodivergence (autism is one such example). Only in this way can we demonstrate appropriate inclusivity and empathy, and help individuals live out their personal lives and social interactions with minimal barriers and optimal support.

How is autism to be understood from a theological perspective?

What does Scripture tell us?

In Genesis 1:27, we read, “God created humans in his own image, in the image of God he created them; male and female he created them.”

Humans are God’s representatives here on Earth. We bear the image of God not just individually, but also as a collective. Autistic individuals are fully part of our human community; without them, we would image God incompletely. (Psalm 103:20-22; Isaiah 44:23; Revelation 4:11)

To bear God’s image is not to be free of disability or disease. All humans, including autistic individuals, are created in the image of God, and are given a special calling from God, to reflect God’s glory in this world.

Autistic individuals represent divergence from typical neurological presentation, but they are not deficient.

How can scientists respond?

Understanding disability from a theological perspective requires holding two poles in tension.

Many of us live with disabilities—some visible, some invisible, and each impacting our lives in different ways and to different degrees. These unique characteristics are part of who we are and an opportunity to show the grace of God. They are not a defect or something to stigmatize.

At the same time, scientists are called to be stewards of the natural world. God has given us tools to help people with disabilities receive support and accommodation to flourish.

One way we can do this is by identifying autistic tendencies early in childhood, and providing appropriate psychological, educational and social support services. Doing so can avoid prolonged neglect that can result in additional emotional and relational burden to autistic individuals, and empowers family members and others to appropriately support their autistic loved ones.

Conclusion

ASD is a reflection of diversity, not deficiency. At the same time, it is a disability, one which calls for human kindness, social support, and appropriate policies and programs.

It is not a crisis, nor is it an epidemic. It is a lifelong neurodevelopmental condition that calls for care, attention, and appropriate research funding.

Also read:

• Autism in Personal and Pastoral Reflection
• A Personal Reflection on Autism and Hope
• Diversity and Disability in the Church

ASD exists within individuals who are part of communities. All members of these communities should act with special grace to be “humble and gentle; patient, bearing with one another in love.” (Ephesians 4:2)

Neurodivergent persons are fully part of the Body of Christ, and we should look for God’s special gifts to the church from them.