Monday, January 11, 2016

When Autistic Kids and Teens Are Aggressive or Self-Injurious: Overview


Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism

Why do some autistic children and teens become self-injurious or aggressive? How can parents and caregivers help the kids in their care get through meltdowns safely, protect the kids themselves as well as family members, and anticipate and avoid future incidents?

This was the topic of a recent workshop I moderated at Support for Families of Children With Disabilities, in San Francisco, with speakers Dr. Clarissa Kripke, Brent White, and Lindsey Anderson. The presenters covered a lot of material, which we'll publish here in three parts:
  1. Overview (Shannon Des Roches Rosa)
  2. Medical and trauma-informed practices (Dr. Clarissa Kripke)
  3. Autistic professional and personal insights (Brent White and Lindsey Anderson)
The workshop was well-attended (standing room only), engaged and productive. One of my favorite parts was that, after a short explanation of why "flappause," or flapping one's hands for applause, was more sensory-friendly than clapping, the entire audience flapped instead of clapping.

Here's the overview I presented.

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Lindsey Anderson, Brent White and Nora,
Clarissa Kripke, and Shannon Des Roches Rosa

[image: three white women, one white man,
and one cream-colored small dog, posing for the camera.]
My name is Shannon Des Roches Rosa, I am the parent a fifteen-year-old high support autistic teen. I am also senior editor at Thinking Person’s Guide to Autism. I have the honor of introducing you to three wonderful experts.
Dr. Clarissa Kripke is Clinical Professor of Family and Community Medicine at UCSF and Director of the Office of Developmental Primary Care. The Office of Developmental Primary Care is dedicated to increasing the capacity of the health care system to serve adults with developmental disabilities. Dr. Kripke serves as primary care physician for many of the Bay Area’s most medically fragile and behaviorally complex people with developmental disabilities. Her perspective is also informed through parenting an autistic teen. 
Brent White is Autistic/Neurodivergent/Dyslexic. He designed and directs the ACAT Program ofthe non-profit Ala Costa Centers and the Berkeley Unified School District in Berkeley, CA. He also designed and directs the ACT adult day program. He lives a quiet life in his small apartment with his dog Nora, cat Bill, a few thousand books and an impressive collection of early Disneyland memorabilia.
Lindsey Anderson is a teacher at Ala Costa Adult Transition Program in Berkeley, California. She is a neurodivergent autistic queer activist raised in the South. Lindsey currently works with neurodivergent communities to restructure historical narratives to be written by and to focus on neurodivergent perspectives.
We understand how many of you are here because you experience crises, and need support. We do, too.
This is an emotional topic, and we want to respect that. We also want to reaffirm that it is OK and even necessary to ask for help, if you are in a situation you cannot handle on your own. We want everyone here to be aware of what your options are, and how many options there are.
We’d like to ask people to have respect for their kids’ or clients’ privacy when asking questions. You can ask us questions afterward, privately, and we will answer those questions to the best of our ability, but please know that Dr. Kripke specifically cannot give medical advice to people who are not her patients.
I’d also like to remind people to please respect Lindsey’s and Brent’s experience, especially when it comes to understanding what it’s like to be autistic. Autistic perspectives on these matters are included too rarely, and I personally have been so grateful for the insights of autistic people when it comes to supporting my own son. 
We are here today to discuss reasons why autistic people of all ages may be aggressive or self-injurious, to help keep your kids feeling secure, well-cared for, understood, and safe.
Again, we want to also support parents and families. Being in crisis is not the same as being a failure. Nor is it a personal failure to admit you and your child need help. Nor is everything fixable. But things can usually be so much better if we understand reasons why autistic kid and adults can be aggressive and self-injurious.
Aggression and self-injury triggers can include:
  • Frustration
  • Lack of communication options
  • Illness
  • Abuse
  • Needs and wants not being respected. 
  • Sensory overload.
Sometimes, autistic kids are frustrated because the don’t understand why they are different, or are mad that they’re different. Youshould tell your kids that they’re autistic. To quote one of my favorite autistic writers, Chavisory, “They already know that they’re different. You can’t keep them from knowing they’re different by not telling them.”
Sometimes, these matters can be addressed by modifying a person's environment. Many environments are unfriendly to autistic sensory systems, especially since autistic people can't always filter input the way non-autistic people can. Environmental triggers to be aware of include:
  • Echoes
  • Flickering lights
  • Perfume
  • Sounds (many autistic people have "super hearing, and hear things you don't)
Sometimes communication is a factor — even for those autistic who have some language.
Make sure effective communication is in place. Do not let people discount a person’s need for communication, or say it’s too late. It’s never too late. Often-undiagnosed motor challenges that can interfere with an ability to communicate, or demonstrate an ability to communicate include:
  • Movement difficulties
  • Apraxia
  • Dyspraxia
Sometimes aggression and self-injury happen because non-autistic people do not recognize or respect autistic ways of being. It may seem odd to outsiders for a person to constantly want to have a straw in their mouth, for instance, but holding that straw may be intensely soothing to that person and allow them to function in the world better. So if a person needs their environment just so, or needs to repeat phrases for reassurance, and they are not being disruptive ... the humane option is to accommodate the autistic person's preferences.
Sometimes, autistic people cannot manage without medications. While we need to be aware that autistic people often react atypically and paradoxically to medications, that medications should not be used as chemical restraints, and that the environmental, communication, and understanding-based approaches to support should be tried first, some autistic people do rely on medications to be able to function in the world. This needs to be respected as well.