Tuesday, February 2, 2016

A Vacation Destination for Autistic People And Their Families: Surfside Beach, SC

John Ordover

Surfside Beach, South Carolina, a town just South of Myrtle Beach, has declared itself an “autism friendly travel destination.” For a deeper look into what this means on a practical level, John Ordover spoke with Champion Autism Network's Becky Large, the prime mover behind the project. Ms. Large is the parent of an autistic child.


[image: Neon-lit Ferris wheel at night,
behind a downtown entertainment district.]
John Ordover:  Before we get into the specifics of how the town is prepping for autistic kids and their families, what do Surfside and the surrounding area have to offer for vacationers in general?

Becky Large:  Water recreation, the beach, inlet and rivers, with boating, fishing (sea, surf, pier and fresh water), crabbing, clamming, oystering. There’s a Sky Wheel. Myrtle Beach boardwalk. Wacattee Zoo, zip lining, Broadway at the Beach, a museum, an aquarium, mini-golf, golf. Family Kingdom Amusement Park, water parks, go cart racing, laser tag, bouncy houses, roller skating. Myrtle Beach Speedway, Huntington Beach State Park, Myrtle Beach State Park, and Brookgreen Gardens.  I know I'm forgetting something -- there is a TON to do here.

JO: How would people from across the country get there?

BL: It’s only five miles from Myrtle Beach International Airport

JO: So anyone can fly in, or drive if they live close enough. What's Surfside Beach like?

BL: It’s a quiet little haven. The Town Council enforces zoning laws that keep the town small, safe and quiet. Myrtle Beach can get quite rowdy with the many high-rises and the boardwalk, but Surfside is an oasis of calm.

JO: I'm sure you know how worrying it can be for autistic kids and their families to visit new places; what do you see as their major hurdles, and how will Surfside be addressing these issues?

[image: three kids in wetsuits and lying on surfboards,
riding a small wave.]

BL: The first thing you need on a vacation is a place to stay, and local company Surfside Realty, got right on board by arranging for beach houses that are prepped for the safety of kids who might accidentally break things, or have seizures. The South Strand Lions Club and other volunteers will pack away breakables and do whatever else will help the kids and their families feel at home and relaxed.

JO: Will this include hotel rooms as well as beach houses?

BL: Yes, the local Holiday Inn, Surfside Beach Resort and Comfort Inn are ready to go.

JO: What reaction did you get from the realty company and hotels that most surprised you?

BL: When I told them upfront about the difficulties autistic kids face just being in a new place, I thought they might be put off by that -- but it turned out the hospitality industry is used to handling guests with all kinds of different circumstances. Before a family arrives they will make sure that whatever needs to be done to kid-proof the beach houses or hotel rooms will be done. If there is anything in particular you'll need for your kids to feel at home, just let them know when you’re booking your stay. It was wonderful to get this much support

[image: Beach boardwalk with palm trees, at sunset.]
JO: So the whole town is ready?

BL: We're transforming Surfside into a judgment-free zone, both the beach and the surrounding area. Businesses, restaurants are being trained in the needs of our peeps and the response and support have been overwhelming.

JO: Was it difficult to convince the business people and political entities to get on board with the idea? 

BL: Not at all.  I have the honor to serve on the Surfside Beach Business Committee Board and was thrilled to get the enthusiastic support of the entire board, especially from Sammy Truett of Moore and Associates Insurance. The recommendation was approved by the Business Committee and the Town Council issued and approved the resolution unanimously. I'm kind of a force to be reckoned with and don’t have a problem asking people for help, support, and to be involved -- and 90% of the time they jump in and want to help in any way possible.

[image: a small crowd of people on a sandy beach.]
JO: Will respite care, or aides with autism experience, be available for hire?

BL: I am meeting with Autism Service providers to arrange for exactly this. Details will be on our website, Champion Autism Network, by mid-February. The site will also have discount codes and event details as things come together.

JO: So basically, if you can show local businesses they can fill rooms and tables by serving the needs of autistic kids and their families, this can be a win-win for everyone?

BL: I’d call it a win-win-win, as not only are we helping local business and autistic kids and their  families in the moment, but we’re building acceptance and community.

JO: How did you get started with all this?

BL: In 2014 I started the Sensory Friendly Movies at the Grand 14 in Myrtle Beach.  The response was overwhelming and the parents kept asking, “What else is there?!!”  In response to them, in 2015, I wrote a grant and received start-up funds through the United Way of Horry County and started the ACE (Autism Community Education) Program with an Autism services provider down here, SOS Healthcare, Inc. which was to train businesses, venues and restaurants in the needs of our peeps. This initiative is a spin-off on that. It is a constant effort in education and Autism Acceptance, and I never stop sharing.

JO: I take it that when you’re done with Surfside, the rest of America is next?

BL: I do hope that this will build momentum and spread across the country and the globe, and that I'll be a part of those initiatives as well.

JO: If people want more information, or to track your progress, where should they look?

BL: They should go to go to www.championautismnetwork.com, or Champion Autism Network on Facebook, or email us at championautismnetwork@gmail.com.

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.


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.