Leading with Compassion and Science at a Time of Rising Autism Rates

The CDC’s latest report on autism prevalence reflects the importance of early diagnosis and access to critical services. According to the data, 1 in 31 eight-year-olds in the United States were identified with autism in 2022—the highest rate ever recorded. This marks an increase from just two years earlier, when the number stood at 1 in 36.

The increase in autism diagnosis is due to a multitude of factors including progress in early screening, greater public awareness, expanded diagnostic criteria, an increase in the number of adults who receive a diagnosis later in life, and better access to diagnostic services—particularly in communities that have historically been overlooked. For the first time, the data show that Black, Hispanic, and Asian/Pacific Islander children are now being diagnosed at higher rates than white children. We also see encouraging gains in the identification of autism in girls. These are signs that we are moving in the right direction toward greater equity. But we cannot stop at diagnosis.

Every family that walks through our doors teaches us that identifying autism is only the beginning. What comes next—intervention, support, and lifelong services (when needed)—is what truly changes lives. And for many families in the country, these services remain difficult to access, unaffordable, or simply unavailable.

This is especially true for profoundly autistic individuals—those who are minimally verbal or nonverbal, have co-occurring intellectual disabilities, and require around-the-clock care. These individuals make up an estimated 27% of the autism population, yet their needs are often left out of the conversation.

To address this, we recently published Profound Autism: A Parent’s Guide, a first-of-its-kind resource from the National Autism Center at May Institute. This guide was created for families who are navigating the complex and often isolating world of profound autism. It offers practical, evidence-based strategies to improve quality of life—not just for the individual, but for the entire family.

We developed this guide because families told us what they needed: tools for building communication skills, managing self-injury, navigating daily living tasks, and coping with the intense stress that often accompanies caregiving. We listened. And we drew on 70 years of experience supporting individuals with significant needs to create a resource grounded in both science and compassion.

A 2023 CDC study found that profoundly autistic children are more likely to be female, born preterm or with low birth weight, and from racially and economically marginalized backgrounds. Many experience severe behaviors and medical complications. These realities demand a robust, targeted response from our field—one that recognizes the urgency of providing tailored services, training more clinicians, and advocating for policy solutions that support families across the lifespan.

We know that autism is a spectrum and is unique to each individual. I have had the privilege of witnessing the accomplishments of autistic individuals in our programs who use assistive technology to communicate, hold jobs, build friendships, create art, and live joyful lives. I have also seen the resilience of families who meet each challenge with courage and love. Their stories are proof that with the right support, meaningful progress is possible.

But these outcomes are not guaranteed. They require a system that is ready and resourced to meet the needs of every individual—regardless of age, race, income, or level of disability.
As a state with a proud tradition of innovation and leadership in human services, Massachusetts is well-positioned to lead this charge. But we cannot do it alone. We need investment in early intervention, inclusive education, adult services, and caregiver supports. We need to build the workforce, strengthen provider networks, and ensure that the voices of profoundly autistic individuals and their families are heard and centered in policy decisions.

This moment calls for focus—and for unity. We must come together as providers, educators, policymakers, and advocates to ensure that our systems rise to meet the growing needs of our community.
At May Institute, we are committed to leading with science, compassion, and integrity. The rising autism prevalence is more than a headline—it’s a reminder that every child and every family deserve our full attention, our best thinking, and our unwavering support.