Autism, Inclusion, and Behavior: Don't Leave Us Out!
It has been amazing to see the growth of autism awareness and inclusion. There is a growing understanding of autism and more opportunities for inclusion. There is one characteristic of autism, however, that deserves more attention: challenging behavior. Due to the neurological differences with autistic individuals, struggles with psychological flexibility, anxiety, communication difficulties, sensory processing, and rigid routines often result in challenging behavior. Challenging behavior looks different across people with autism, but the main result is that this behavior stops the autistic person and their families from opportunities they would have otherwise. Additionally, challenging
behavior is viewed differently than other autistic characteristics in schools, extra curricular activities, and the public even though the reason behind the behavior is autism. It is very common for programs and specifically designed for children with autism to reject kids with challenging behavior (or have them try and then kick them out). With 1 in 36 children diagnosed with autism, challenging behavior is a present and large area where our community needs to pay attention.
So what do we do in order to include and support all people with autism, including those that engage in challenging behavior. The first step is to change the conversation about behavior. Here are some ways:
Remove all past blame and talk about the future: When a child engages in problem behavior, the first instinct is often to blame. Blaming the child, blaming the parent, even blaming other teachers or therapists. However, if the reason the behavior is happening is due to the challenges related with the diagnosis, the conversation needs to change to do we support the child moving forward. Irregardless of blame, there is no way to go back in time and change anything, so talking about it is a waste of time and removes attention from what is actually needed. Discussions about challenging behavior should look to future steps everyone can take to support and include the person struggling with challenging behavior.
Establish that the person belongs exactly where they are: The words, "is there a better place?" are like nails in a chalkboard to us. It is constantly said and the answer is easy: No. The only place for a child with autism that engages in challenging behavior is exactly where they are-- their own home, their own school, and their own community. What needs to change is the type of support that occurs in those places. The environment (the stuff, the training of the adults, the daily schedule) is what needs to change, not moving a child to a different place. To truly include all people with autism, ensure that environments are created with them in mind. This may mean fences around playgrounds or classroom materials out of reach. It may mean extra staff training or more therapeutic support. It could mean sensory spaces in the classroom or different classroom work during the day. Whatever it is, to truly include, you need to change the place, not move the person.
Advocate for support: The only thing worse than "is there a better place?" is "we don't have that here." Those words signal, clearly, that advocacy is needed. The only response to "we don't have that here," should be "go get it." We are not trying to minimize the very real difficulties with finding and funding support, however, unless there is advocacy to get the needed supports or the specialized personnel, people with autism that engage in challenging behavior will continue to be pushed aside with little opportunities. So in addition to saying, "go get it," ask questions about who makes the decisions to get that support, what does that person need to make decision to better assist the child, what else can you do. No one bats an eye when a child with cancer needs very expensive treatment and support, so why is it so hard for child with autism and challenging behavior? How can we change that? There are a wide variety of areas in which you can advocate right now.
Challenging behavior is often a part of autism. It should not be forgotten in the conversation about awareness and inclusion.