During a press conference on April 16th, Robert F. Kennedy Jr. became the first high-level government official to publicly address profound autism. His words carried deep meaning for me, for my son Aidan, and for families across the country who live with the reality of profound autism every day.
“This isn’t just about numbers. It’s about families—parents, siblings, and caregivers—who live with the impact of profound autism every day.”
— Robert F. Kennedy Jr., April 16, 2025
The Growing Prevalence of Autism in America
Surveillance Year Birth Year Number of ADDM Sites Reporting Combined Prevalence per 1,000 Children (Range Across ADDM Sites) This is about 1 in X children 2022 2014 16 32.2 (9.7 - 53.1) 1 in 31 2020 2012 11 27.6 (23.1-44.9) 1 in 36 2018 2010 11 23.0 (16.5-38.9) 1 in 44 2016 2008 11 18.5 (18.0-19.1) 1 in 54 2014 2006 11 16.8 (13.1-29.3) 1 in 59 2012 2004 11 14.5 (8.2-24.6) 1 in 69 2010 2002 11 14.7 (5.7-21.9) 1 in 68 2008 2000 14 11.3 (4.8-21.2) 1 in 88 2006 1998 11 9.0 (4.2-12.1) 1 in 110 2004 1996 8 8.0 (4.6-9.8) 1 in 125 2002 1994 14 6.6 (3.3-10.6) 1 in 150 2000 1992 6 6.7 (4.5-9.9) 1 in 150
Source: CDC
As you can see, the prevalence of autism has grown exponentially over the past few decades. For far too long, families like mine have struggled to have our voices heard. And while it is long overdue, I’m grateful we are taking a step forward.
What Is Profound Autism?
Previously and inadequately labeled as severe autism, nearly 30% of people on the autism spectrum have profound autism.
Profound autism can express itself in various additional symptoms and co-occurring conditions, including:
Intellectual Disabilities
Many individuals with profound autism have significant cognitive impairments that affect reasoning, problem-solving, and adaptive functioning.
Minimal or Absent Language
Many are nonverbal or have extremely limited communication abilities, relying on gestures, visuals, or assistive technology.
Epilepsy and Seizure Disorders
Seizures occur in a substantial portion of individuals with profound autism, often beginning in childhood or adolescence.
Sensory Processing Issues
Extreme sensitivity to lights, sounds, textures, or other sensory stimuli can result in distress or self-injurious behaviors.
Anxiety and Mood Disorders
High rates of generalized anxiety, panic episodes, and mood instability are observed, often without the ability to express distress.
Obsessive-Compulsive Behaviors (OCD)
Repetitive, rigid, or ritualistic behaviors that interfere with daily life can be common and difficult to redirect.
Sleep Disturbances
Chronic insomnia, irregular sleep-wake cycles, and frequent night waking are often present and hard to treat.
Lack of Safety Awareness
Many individuals with profound autism cannot recognize physical danger and require constant supervision to stay safe.
Autism is not a blessing. The love I have for Aidan is a blessing. The strength and determination he demonstrates every day are blessings. The common bond I share with other families struggling with profound autism is a blessing. But autism, is most definitely not a blessing.
If I could take my son’s autism away, I would do it in a heartbeat.
I advocate for individuals spanning the entire autism spectrum. The fact is, the higher functioning autistic population has the capacity to be independent, hold a job, and eat a meal on their own. My son, and thousands of other individuals throughout New Jersey with profound autism, cannot. They will require support and supervision for the rest of their lives. Unfortunately, they cannot advocate for themselves.
We finally have someone in a position of power who is acknowledging the truth about profound autism and is taking steps to fight back. We are at the forefront of a fundamental movement, and I am grateful to be part of it!
