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:
- Overview (Shannon Des Roches Rosa)
- Medical and trauma-informed practices (Dr. Clarissa Kripke)
- 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.
|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
Aggression and self-injury triggers can include:
- Lack of communication options
- Needs and wants not
- 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:
- Flickering lights
- 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
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.