On December 18th, The Spokesman-Review reported on a young woman severely affected by autism and enrolled in Shadle High School’s ABLE (Autism Behavior Learning Environment) program, and her father’s efforts to obtain accountability for injuries resulting from, he alleged, poor behavioral management, inappropriate isolation, and general practices of abuse and neglect. (“Dad alleges autistic daughter mistreated at Shadle Park.”) Video of a related incident was posted on YouTube, showing police escorting another student in that program into an ambulance because of behaviors deemed unmanageable by school staff.
The video has since been pulled off the internet, but its images stay with me, and call me to ask how things might have turned out better for these children. I know from my own son’s experience that we can choose to do better.
I have four grown children: one a designer, one a pre-med student, one a steel worker, and one a 24-year-old living with autism who graduated from the ABLE program. School isolation rooms were a feature of my son’s life. On one occasion, I was called to bring him spare clothing, as he’d been spreading feces inside the padded room that staff used to calm students or remediate unwanted behaviors. When I asked how often he was placed there, they reported 13 times within two days – sometimes when he simply refused to do his work. I was stunned, and immediately asked to observe his classroom so I could understand when and why isolation was being used. As I worked with staff and administration on my son’s behalf, they began to make significant changes – in the environment, daily programming, and staff training.
It took resources and the committed effort of those with understanding of evidence-based practices to turn my son’s experience around and to effectively end the need for his seclusion. His trust and thus his willingness to engage with staff increased, and his emotional stability was restored. Teachers and paraprofessionals delighted in the progress he made under their tutelage. They, like all of us, want to know their work makes a difference.
This is not to say my son was “cured,” or never again aggressive; or that the school never again fell short of meeting his needs. He still had autism, and he still could not speak. He is now 6’5” and 255 pounds. If he has a meltdown, it can compromise the safety of others. But there is no question that the intensity and frequency of his meltdowns drastically decrease when he is in a consistently stable, supportive environment. When he is not in crisis, which is most of the time, these same supports help him to spend time with family and friends, successfully navigate a dentist appointment, enjoy a bike ride, swim at the YMCA, and sit with friends at a restaurant ordering ribs and a root beer.
I share his story to illustrate the measurable benefits of investing in the right programming, staffing and environment from the start. We can do this. We can choose to do the right thing. When we do not make that choice, we simply kick the can down the road.
We kick the can when program officials, at their wits’ end, call in law enforcement to address the stress created in an environment ill-suited to a student’s needs, and when the local emergency room becomes a final option “drop off” for a child in crisis. Here the individual is likely to be sequestered once more, often with the use of drugs or physical restraints. Isolation, whether it be in a padded room, a roaring ambulance filled with strangers, or a bustling ER, is a frightening experience for any human being.
This situation reflects our systems’ failure to support the needs of children with disabilities through appropriate supportive housing for high-needs children and adequate state and federal funding for special education and residential supports. It may be that no one individual has done something wrong, but the utter waste of resources is wrong. The undeniable pain to individuals is wrong. We need to make isolation of any kind a truly last and rarely used resort for children and adults with autism and other developmental disabilities; for my son, and certainly for frightened, 15-year-old girls.
Dawn Sidell, RN, is executive director of the Northwest Autism Center and a member of the Every Student Counts Alliance.
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