This post originally appeared on StatNews.
On Thursday, the Centers for Disease Control and Prevention announced another increase in the prevalence of autism among children. In a pair of new reports — one focused on 8-year-olds and one on 4-year-olds — the CDC found that 1 out of every 36 children has autism. This is a significant increase from the 2021 estimate of 1 in 44, which was a big jump from 1 in 110 in 2006.
This increase may sound scary. But as autistic adults and as parents of children with autism, we advise you to relax. There is no “epidemic of autism.” Instead, what we face is an epidemic of need.
The main reason we are finding more autism is simple: Clinicians are getting better at spotting what was always there. There is no simple test for autism, so diagnosing it requires substantial training in observational techniques. As a result, diagnosis can vary significantly depending on the population and the competence of clinicians. The CDC reports significant variations in autism rates from state to state and even from one school district to another. Yet there is little biological evidence to explain this. In another example of the variation, prior reports found more autism in white children.
In the new reports, the balance has shifted, with increasing identification among people of color. We see that as an improvement, but we’ve still got a way to go, particularly when it comes to diagnosing autism in girls and women, in people with less visible symptoms, and others. The new CDC report finds a 4-to-1 ratio of male-female diagnoses. But we are skeptical of that number, which has barely changed over the past decade, even as overall prevalence has risen. In our academic work, we find that autistic female students often outnumber autistic male students in college groups. One of us, (D. G.), is a social worker and notes that women in adult settings often come to diagnosis later in life, frequently as mothers and grandmothers. This suggests many females still escape childhood diagnosis today.
Adults tend to compare autistic women with autistic men. But when it comes to their nuanced expressions of autism, it’s more useful to compare autistic women with non-autistic women. We suspect something similar happens with children, leading to an ongoing failure to spot girls with autism. Throughout recent history, every time we’ve heard of a population group that “has no autism,” studies have ultimately revealed it, hidden by cultural factors, and overlooked by diagnosticians.
Identifying autism may seem easiest in autistics with the highest support needs — who have externalizing expressions of autism — but diagnostic errors still happen. Sometimes co-occurring ADHD, anxiety, learning disabilities, or even effects of medications for epilepsy and behavior can drive IQ scores down, suggesting intellectual disability that is not present. This may result in a child being placed in a more segregated school setting, facing lower expectations, and being denied opportunities for learning.
Other autistic people have a more internalizing presentation of autism. They might seem “quiet and shy” rather than “abnormal or disabled.” Their autisms are hard to spot, so clinicians may seize the most obviously presenting feature (such as anxiety or attention issues) and fail to dig deeper to uncover the constellation of combined features that point to autism. This is a recurring problem: When attentional issues, obsessive-compulsive disorder, depression, self-harm, eating challenges, anxiety, and other co-occurring conditions are compartmentally diagnosed, the framework for support remains incomplete. People can end up isolated, disconnected from the neuro-inclusive community who can aid them in the liminal journey of reintegrating their identity. They may be medicated or treated in ways that are not helpful. Similar maltreatment can occur when autistic people present with intersectional gender minority differences.
Better understanding also helps us recognize where our current diagnostic regimens are failing us. Too many marginalized people go undiagnosed thanks to screening tools that are less effective for people of color, those with gender minority identities, and some with cultural differences. As tools and expertise improve, diagnoses will continue rising.
This is critical, because unsupported autism contributes to homelessness, abuse, self-harm, and other preventable damage. The more autism we recognize, the more people we can help.
Most autistics report bullying not only from students but also from therapists and educators. It should not surprise anyone that autistics have poor graduation rates. In adulthood, autistics face under/unemployment and inadequate assistance from rehabilitation agencies. Many autistics of color end up in the school-to-prison pipeline instead of receiving an appropriate diagnosis and the ensuing understanding and essential services. Adults live under pressure to conform to a world that they may not understand, and that does not understand them.
Even with proper diagnosis, anxiety, depression, and suicidal ideation are constant threats. In the medical domain, autistic people are more likely to experience unrelieved suffering from intestinal distress, epilepsy, and other conditions. Sometimes this is a result of communication barriers, whether because someone is nonspeaking or is unable to make consistent use of language. Other autistic vulnerabilities have genetic or idiopathic causes. Whatever the reasons, too many autistics die early from preventable causes.
Autism does not go away, as evidenced by the numbers of adults now getting diagnosed in their 50s, 60s, and 70s. In fact, the most successful autistics (by neurotypical standards) succeed not by outgrowing their condition but by growing into it and learning to use strategies to achieve. But even those who navigate by learned strategies often do so at great costs. For example, many environments encourage masking (the practice of hiding one’s autism) despite research demonstrating the harm that occurs when autistic persons cannot live authentically. Autistics may be unaware of their potential, suffer needlessly, and be unable to attain their personal life goals.
There are supports out there, like vocational rehabilitation, Social Security, and food stamps — but executive functioning disabilities can make them inaccessible to autistic adults. There’s no single application for support; each exists in its own silo. It’s as if the systems combined to create a panopticon of rules, waiting to pounce on unknowing, inexperienced users. We need better systems with easier — or better still, supported — access that considers the limitations an applicant may face.
Despite the importance of a diagnosis, supports work better when focused on needs. Many people assume that services are necessary only for those with the highest, most observable support needs. In reality, functional limitations exist for all autistic persons, and those needs should determine services. Some autistics will need 24/7 support with access to qualified personnel, who must be trained and paid a living wage to provide consistent care. For others, 10 hours a week of in-home support may promote enhanced wellness and balance, so they can return to or enter the workplace. Care should be available as needed, with individual variances in intensity and frequency. Flexibility is essential because living with autism is a dynamic process. Lifetime supports should allow people to flow in and out, as life changes happen.
Too often, autistic adults without the benefit of privileged family live in squalor, at risk of abuse and neglect. Some are institutionalized against their wishes. Anyone taking social services funding is forced into penury, with income capped below the poverty level; their benefits are constantly under restriction, and they endure an unending burden of proof to keep their supports.
This leaves most autistic people and their families ineffectively supported. The implications of this failure are everywhere. In the quest to help their kids, parents (usually mothers) sacrifice their careers and identities, becoming systems navigators for their beloveds. Not everyone has the capacity to learn the systems or can afford to leave their job to become a full-time caretaker.
In the face of these desperate needs, it’s time for our community to stand strong and advocate for the services needed for ourselves and families. Wealth, race, or cognitive/educational privilege should not be the deciding factor predicting who survives and prospers in living an autistic life. The rising autism numbers presented by our CDC should be a wake-up call — there are a lot of us, and what’s truly increasing is the cost of ignoring our needs. It is high for us as individuals and for families — and even higher for society.
John Elder Robison is an autistic adult and the neurodiversity scholar at the College of William & Mary and neurodiversity adviser to Landmark College and the Lawrence Livermore National Lab. He served two terms on the Interagency Autism Coordinating Committee (IACC), which produces and manages the Strategic Plan for Autism for the U.S. government. Dena Gassner is an autistic adult who is an adjunct professor at Towson University and a Ph.D. candidate at Adelphi University. She currently serves on IACC and is a board member for the Institute for Exceptional Care. Both authors are parents of autistic adults.
This post originally appeared on StatNews.