Autism and Respite Care in Texas: A Call to Action

respite care in texas

How to access respite care in Texas?

Today, in just 25 minutes, Charlie displayed everything I’ve been trying to convey to the necessary authorities regarding his extreme and dangerous behaviors—aggression, spitting, self-injury, and pica.

Here, services are scarce, and the waiting lists for respite care in Texas are decades long. Recently, I received a letter stating it would be an additional 15 years before Charlie made it to the top of the list.

There’s a way to access services earlier through a “diversion spot,” reserved for the most extreme cases—kids in crises at risk of institutionalization.

Charlie has been in crisis for almost a year, and today marked one of the final steps in the process of accessing respite care—he had to go through another intellectual disability assessment.

DID – Determination of Intellectual Disability Appointment to access respite care in Texas

We arrived at the appointment a bit early, and Charlie was agitated in the waiting room, hitting me and spitting everywhere. I moved to a chair across from him to avoid getting hit, and he seemed to calm down momentarily. (Picture)

When his name was called, we walked to the evaluation room. Charlie continued spitting and hit me again as soon as he sat down. The psychologist remained composed as Charlie answered questions incorrectly and continued his behaviors.

As the evaluation progressed, Charlie became more agitated, hitting me harder and spitting while rubbing it over the table, his clothes and my body… I offered to clean up, but the psychologist said she would disinfect everything after we left.

Aggression, self-injurious behaviors, and spitting

At one point, Charlie hit me so hard that I let out a “Ouch! That hurt!”. The psychologist stayed unfazed.

A few seconds later, Charlie got up and with SpiderMan dexterity grabbed a post-it sitting in front of the psychologist, his favorite pica item. I managed to get the Post-it back before he could eat it, which only increased his frustration.

At that point, he started hurting himself and alternating between screams and big gobs of spit that I had to wipe off my face.

Leaving the appointment, I felt a mix of emotions—relief that they witnessed Charlie’s behaviors firsthand, but also defeated, hopeless, and terrified for the future.

We need help, and we need it now.

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