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Sarah Hernandez, Assistant Professor of Occupational Therapy at Bay Path University, talked to autistic high school students at High Road Academy in Wallingford Tuesday about dealing with their autism. Hernandez, who has autism, was elected to the Enfield Board of Education in November. She aims to raise autism awareness and is an advocate of ‘neurodiversity’ being a consideration when it comes to inclusion.

As an education and disability advocate, I work with many parents who have kids on the spectrum or who struggle with other disabilities that are not always visible. Many of these disabilities involve behaviors that are expressions of anxiety or depression but that present in confusing, easily-misinterpreted ways. For educators, and even doctors, this frequently leads to a behavior-driven response. This was how ABA, Applied Behavior Analysis, was born.

But when we examine behavior without also looking at the root cause of it, we minimize our kids’ humanity. It’s easy to panic, particularly as parents and teachers.

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There are many reasons that an autistic child might run, self-harm, lash out or melt down. A child might be overwhelmed by their sensory issues, be terrified of being harmed (even by something that seems harmless to someone else), be responding to previous trauma, or simply not understand what is being asked or demanded of them. Or there could be another potential source of distress that is difficult for them to communicate, particularly if a child struggles to speak. My own autistic child speaks easily when he is calm but becomes much less verbal when he is scared.

Something tragic and unspeakable happened in Florida on Feb. 14. To ignore it and the reactions, ramifications and reasons for it, is to deny reality.

Very few of the reasons that an autistic child is “acting up” are because of purposeful defiance or disobedience. Punishment is both inappropriate and cruel, and seclusion, while frequently advertised by its proponents as a way to safely calm down, is in actuality one of the harshest of punishments. A terrified autistic child melts down, confused and overwhelmed, and they are put in a small, confined space to work it out on their own. This isn’t modeling what we want them to do differently next time. This isn’t helping them, soothing them, or looking for a source of their distress.

Restraining a child is similarly damaging. My son was once held face-down on a mat, his hands and feet bent up behind him, because he tried to run out of his classroom. This was at a private, contracted special education school in a suburb of Washington, D.C. He ran because he was afraid of one of the assistants in the room. He had nightmares about this assistant every night. The same assistant is the one who put him in this restraint hold. The school deemed it an appropriate response to a maladaptive behavior.

I was lucky even to be informed. Schools in most states are not currently required to keep records of or inform parents of incidents of seclusion or restraint.

Blue Man cranks it down for the sensory-sensitive

We moved my son to a new school, and it took a full year of intensive therapy to help heal the trauma of his time at his previous school.

Ivar Lovaas, the founder of ABA, once said, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose, and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

From that lens, we get educators and behaviorists who view our children as behavior problems, rather than as humans with thoughts and feelings. They use behavioral training to “fix” what they see as maladaptive behavior without addressing the emotional lives of the children they work with. Worse, we sometimes end up with exasperated, biased adults who would rather our children simply disappear.

To make Legoland Florida Resort more autism-friendly, park leaders are partnering with Autism Speaks to create experiences and spaces for children with autism and their families.

One night my son sobbed in my arms and told me "I'm not a dog, I'm a person. I have feelings." So we began to work with a cognitive behavioral therapist who combined behavioral techniques with talk therapy, empowering my son to understand and contain his response to triggering events. The therapist treated my son like a person, a human with a beating heart.

Schools can use many methods that are safe and supportive to help children with strong behaviors. My son is at a school now where he never runs and rarely melts down. He is still autistic, of course. The difference is in how he is being taught, viewed and understood.

As we discuss the proposed regulations regarding seclusion and restraint in schools here and across the nation, let’s first remind ourselves that our children are people. Even when they have strong behaviors or cannot actively speak about what they need.

Hannah Grieco is an education and disability advocate; she can be reached at www.hgrieco.com.

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