Profound autism is a term that received a formal definition in late 2021. It describes people with autism that require lifelong, around-the-clock care.
The guidance behind this definition is meant to improve the clinical research options and general treatment plan care that individuals receive. Additional recommendations that came from the effort to develop this definition include more personalized medicine, funding prioritization, and adaptive services. [[1]]
For Ram and Kellee Hernandez, the journey they encountered with profound autism with their son, Luka, was an unexpected challenge. They found it more challenging to find the therapy and support that fit his specific needs as he got older.
They decided to do what many other families have done to support themselves. They created a nonprofit program to help Luka, and figured they could do the same for others caught in their situation.
People with Profound Autism Tend to Fall Through the Cracks
Most communities have extensive services available for high-functioning individuals with autism or other disabilities.
The people who seem to have been forgotten when developing services are those who have the most needs. “We remember being new parents and being so excited for our son’s future,” said Kellee. “Sometimes, life throws you a curveball, and that happened to us when Luka was two years old and diagnosed with autism.” [[2]]
Ram and Kellee are raising funds for The Estuary Center, which is a nonprofit that could help Luka and others with profound autism.
“We see [The Estuary Center] as that bridge,” said Ram. “Being able to connect people with autism into the community, and also for the community to embrace those with autism and nurture and look after them in a way people will grow and thrive in their communities.”
When The Estuary Center is operational, it will provide 35 hours of weekly one-on-one therapy programs for ages 13 to 21. The goal would be to teach and practice life skills, such as visiting the dentist or paying for groceries. [[3]]
Once the basics are learned, the one-on-one approach would help to practice those skills in the community.
"80% of adults with autism live at home with their parents, and they will never live unsupervised,” said Kellee. “Simply put – we cannot die.
The Estuary Center recently received a $20,000 grant from the Oregon Community Foundation. The Hernandez family says that’s just the start of this process.
What Are the Signs and Symptoms of Autism?
The intensity of ASD’s early signs varies widely. Some infants show the first hints of this disorder in their first months, while it takes until the age of two or three for others to show obvious signs. [[4]]
Kids of any age can experience a persistent preference for solitude, avoid eye contact, and experience delayed language development with ASD. There could be restricted interests, repetitive behaviors, and intense or unusual reactions to environmental stimuli.
The following signs and symptoms could indicate that a child is at risk for an autism spectrum disorder diagnosis.
| Child’s Age | Potential Signs and Symptoms of Autism Spectrum Disorder |
| Six Months | A child might display no eye contact or attempt to limit this interaction. There could be fewer smiles or other engaging expressions. |
| Nine Months | There could be fewer sharing of facial expressions and sounds when interacting with others. |
| 12 Months | Kids at this age might display minimal babbling, gestures when interacting with the environment or others, or recognition of their name. |
| 16 Months | When other kids are talking at this age, a child with ASD diagnosis risks might offer few, if any, words. |
| 24 Months | Minimal two-word phrases, not including repeating or imitating, are part of a child’s vocabulary. |
Anyone with concerns about ASD should have their child screened by a local healthcare provider. If you’re unsure, you can also try the M-CHAT-R questionnaire to determine if further evaluation is warranted. [[5]]
Why Autism Supports Are Crucial Now More Than Ever
More children are being identified with autism spectrum disorder than ever before. The U.S. Department of Health and Human Services reports that about 1 in 68 kids will receive an ASD diagnosis.
Although autism affects boys four times more often than girls, it impacts children in all socioeconomic, ethnic, and racial groups. Since symptoms are on a spectrum, everyone has different needs, challenges, and skills.
There is no cure for ASD, but early interventions help children learn the skills they need to improve their daily living activities. Even when a profound autism diagnosis occurs, kids can learn, find paths toward success, and thrive with the help of their families, counselors, specialists, doctors, and communities.
That final component is what the Hernandez family wants to bring into the equation for their son and others.
“The Estuary Center’s therapeutic approach will be centered in Applied Behavior Analysis with a modernized perspective and application,” says the nonprofit’s website. “Our emphasis will be on community-based and natural environment learning.” [[6]]
For the Hernandez family, the goal is to create a place where each person's autonomy, safety, uniqueness, and dignity are paramount. All plans are set in collaboration with caregivers, families, and students, with passion-driven engagement.
More information about the effort from Ram and Kaylee Hernandez is available at https://theestuarycenter.org.
References:
[[1]] https://www.spectrumnews.org/news/first-of-its-kind-commission-defines-profound-autism-issues-recommendations/; [[2]] https://www.koin.com/news/oregon/local-family-raising-funds-for-nonprofit-center-to-help-those-with-autism/; [[3]] https://www.facebook.com/watch/?v=1502910006769365; [[4]]https://www.autismspeaks.org/signs-autism; [[5]] https://www.autismspeaks.org/screen-your-child; [[6]] https://theestuarycenter.org/program
