5 Things I wish people understood about profound autism

5 Things I wish people understood about profound autism

1. Communication isn’t just words.

Many individuals with profound autism are nonverbal, but that doesn’t mean they don’t have a voice. Communication comes in many forms—sign language, behaviors, or AAC devices—and it’s up to us to learn their language.

2. Behaviors can’t just be taught away.

I wish… but for many people with profound autism and intellectual disability, understanding cause and effect isn’t always possible. Behaviors like running into the street, swallowing dangerous objects, smashing objects or self-harm aren’t easily corrected through just talking about it or typical behavior strategies.

3. Safety is a daily concern.

From wandering, self-harm, and pica to aggression, profound autism often comes with serious safety challenges. Caregivers are constantly on alert, to make sure their loved ones are safe in a world that isn’t built for their needs.

4. Caregiving is relentless.

Parents and caregivers often sacrifice careers, relationships, and their own well-being to provide 24/7 care, knowing that their child may never live independently.

5. The future is uncertain.

For many families, the question of “Who will take care of my child when I’m gone?” is a constant source of anxiety. Support systems and resources for profoundly autistic children and adults are often severely lacking.