Seeing the Unseen
There are unseen people throughout our community. Many do not know they exist, but the people who know and love them recognize that they have high potential despite the insurmountable challenges they face.
April 29, 2025
by Rich Bobby
There are unseen people throughout our community. Many do not know they exist, but the people who know and love them recognize that they have high potential despite the insurmountable challenges they face. They are people with dreams, people who often live in the moment, while most of us obsess about the past or the future. They are people with special interests, who often relish life’s nuances and simplicity. They are often people who have little to no concept of money or wealth. They bring smiles to those they encounter and inspire many with the subtlest actions they achieve. They develop miraculous ways of communicating as they often cannot communicate verbally, and in exceptional situations can produce a limited number of words to speak.
They may be your neighbor, they may be in your child’s school, and you may have never seen them. This is not because someone is purposely hiding them. You have not seen them because very often those who care for them cannot safely bring them out into the public without the right supports.
They are people who have high potential, potential that would be even higher if more of us knew they existed and were willing to support them.
Who are these unseen people?
They are people who have “profound” autism and intellectual disabilities. They are often unseen from the public’s eye not because anyone wants to keep them out of the community; rather it is because of their significant needs and behaviors that can sometimes lead to unsafe situations without the right supports.
You may be thinking, “Wait, I know someone who has autism.” You likely know someone who has autism, or you may even be a parent of a child or adult with autism. You may know someone from your work or school, or someone in your community.
This brings me to a frequent saying in the autism community: “If you’ve met one person who has autism, you’ve met one person who has autism.” This saying is credited to Dr. Stephen Shore, a professor of special education at Adelphi University, who has autism.
The same statement applies to someone who has both autism and an intellectual disability, as well as a typically developing individual. Would you say all people are the same? Of course not. While all people have similarities, we also have differences. So really, if you met one person, you met one person whether or not they have a disability.
The fact is that the levels of support needs vary widely for people with autism, ranging from activities of daily living to behavioral support needs. At the same time, government funding often unintentionally supports the notion that a person with an intellectual and developmental disability (I/DD) in an adult community day service should receive the same funding as someone with a different set of needs. In this situation, the “everyone gets the same” mentality is not equity. Equity for people with autism and intellectual disabilities means they get their needs and wants met, with the understanding that their needs and wants are different than those of others.
What is “profound” autism?
In 2016 the Centers for Disease Control and Prevention (CDC) reported that 4.6 per 1,000 8-year-olds had profound autism. In April of 2023, the CDC officially used the term “profound” autism in a report that distinguished between autism spectrum disorder (ASD) and a much more serious form of autism. This was published in a peer-reviewed official journal in the Office of the U.S. Surgeon General and U.S. Public Health Service.1
The report concludes that, per a 2022 publication by The Lancet Commission2, the term “profound autism” is defined as someone who is nonverbal or has limited verbal skills and who is likely to have self-injurious behaviors, epilepsy, and an IQ score of less than 50. These individuals require “around-the-clock supervision” as compared to people who do not have profound autism.
Now, in 2025, the CDC reports that 1 out of 31 children at age 8 have been diagnosed with ASD, and of those, 26.7% of the children met the criteria for profound autism.
A Parent & Family Perspective
The often-represented societal picture of someone with autism is the person who excels at elevated levels in identifying patterns with numbers and data, a skill most typically developing people lack. Other successes we often think about include someone with an intellectual disability working at a supermarket bagging groceries, or even someone starting their own business. These successes are very real and exciting, and all of them most definitely need to be celebrated.
At the same time, in my 13 years at Little City, a nonprofit human service organization located in Chicago and the northwest suburbs, I have heard countless stories from parents and families about the lifelong struggles they have faced caring for their loved ones with profound autism who have high behavioral support needs. They have shared their intense feelings of shame, guilt, and helplessness in how to safely support their child they love so dearly. Sadly, some have shared these feelings because others in their lives (including their own family members or friends) assume that if they did a better job at parenting, their child would not have such behavioral challenges.
For parents who have had to make the gut-wrenching decision to have their child placed in a children’s residential program, these feelings are often exacerbated by feelings of defeat because they were unable to safely care for their child in their home environment, and not because of a lack of love or skill. The truth is, they are making the best and safest decision for their child and family, as it can be close to impossible at times to provide “around-the-clock” line-of-sight supervision for a child with profound autism, and the only other feasible solution is having full-time caregivers live in one’s home 24-7, 365 days a year.
A Day in the Life for Families
To paint a picture of a day in a life for so many parents and families who have a child with profound autism, here are some scenarios families have experienced or fear experiencing:
- Imagine getting an average of only 3 hours of sleep at night for fear that your loved one with profound autism will wander out the door into the neighborhood and get lost, or even scarier, walk out into traffic because they lack the cognitive skills to understand the danger of walking into moving traffic.
- Imagine your child doubling in size and strength during pubescent years and now posing a physical threat to you or a younger sibling, which can lead to significant injuries and trips to the ER.
- Imagine being afraid of ever going out to eat with your loved one, even to a fast-food restaurant, for fear that they will jump over the counter and put their hands in the fryer to grab French fries. Or fear that they might run around the dining area stealing other customers’ food, because they cannot understand that the food they see is not theirs to eat.
- Imagine not being able to run simple errands such as going to the grocery store for fear that your loved one will open grocery items or have severe behavioral challenges including screaming, lying on the floor in the middle of an aisle, or banging their head against the floor to the point of injury.
- Imagine your loved one being triggered by the sight of paper, any type of paper, resulting in extreme self-injurious behavior leading to head trauma.
- Imagine being evicted from your residence due to frequent property damage incurred by your loved one.
- Imagine a sibling of a child with profound autism being unable to bring friends over to the home due to fear their brother or sister with profound autism may disrobe completely at any given moment.
- Imagine timing every trip to your household bathroom because simply going to the bathroom or showering could mean you will not hear your loved one engaging in self-injurious behavior.
As you imagine these scenarios, please know this is not due to faulty parenting, or a parent just not trying hard enough. In fact, the parents who have a child with profound autism, by far, are some of the strongest, most resilient, loving, and organized people I have met. They truly are superheroes, who rarely, if ever, get a break.
The Realities
These are the realities of living with someone with profound autism. There is no one at fault and no one to blame. These are the cards the child, parents, and family were dealt in life. The child is not a “bad” child or a child who just needs some solid discipline. Their parents are left with very few, if any, options or choices, leading them to keep their child home where they know they will be in a safe, familiar setting, outside the public scrutiny of the “take control of your child” mentality.
This is why people with profound autism are often “unseen” from the public eye. They are not kept at home because their parents and family do not love or care about them. In fact, it is often quite the opposite: the family keeps the child home out of profound love for their child. They are kept at home to keep them safe and for their own child’s dignity.
This might be hard to imagine, but it is a reality that many families live with daily. Their lives are challenged by frequent 911 calls due to behavioral safety concerns, many trips to and from the ER, and limited ability to receive basic healthcare and dental services by professionals who have the skills and expertise to work with those who have profound autism. Many people do not know this, but there are limited to no psychiatric hospitals in the state of Illinois that can admit people with profound autism due to the unique skillset needed to work with this population.
In Illinois, there are fewer than 10 children’s residential programs that serve children with profound autism, and Little City is one of them. Sadly, many youths with profound autism are often transitioned out of state due to Illinois’ lack of capacity to serve them. They can be separated from their families and community, which is a profound loss to all involved.
The Good News: Positive Outcomes are Possible
The good news is that there are solutions. With the right funding to support a highly skilled and qualified workforce of individuals who are willing and able to serve this population, positive outcomes can happen.
At Little City, we have seen positive, life-changing results for children and youth with profound autism, and we have directly witnessed the high potential that can be achieved with the right supports.
Little City’s THRIVE program encompasses children’s residential services and a therapeutic day school for those with profound autism. In residential and classroom settings with no more than four youths per setting, we provide one-to-one staff support, behavior therapists, speech and language pathologists, occupational therapists, mental health counselors, and crisis supports. We have achieved great quality-of-life outcomes through this support system.
A core factor in these positive outcomes is our front-line staff, specifically, our Direct Support Professionals (DSPs), as well as our school’s paraprofessionals and special education teachers. These are the people who dedicate their time and talent to ensure the people Little City serves are better off because of their support.
We have found that in many situations, individuals with profound autism need one-to-one support in a classroom and living environment. The challenge is typically finding people who are willing and able to do this most challenging work with the state-funded wages for front-line staff. Therefore, it is imperative that people working with individuals who have significant behavioral support needs are well compensated, well trained, and well supported.
The state of Illinois has an opportunity to make a difference. The clinical model has been proven, and those doing the work along with their parents and families have directly witnessed the progress and potential of what was once considered a hopeless situation. People do not need to be sent out of state or be separated from their families.
Families with loved ones with profound autism need to be seen, and most definitely can be seen with the right supports.
1Hughes, M., Shaw, K., et al. The Prevalence and Characteristics of Children with Profound Autism, 15 Sites, United States, 2000-2016. Public Health Reports. 2023
2Lord C, Charman T, Havdahl A, et al. The Lancet Commission on the future of care and clinical research in autism. Lancet. 2022