Expert corner

Are You Prepared for a Autism Emergency?
To ensure safety and lower risk for a child or adult with autism, parents and care providers will need to become proactive

A leading cause for for concern are children and adults who run away or wander from parents and care providers. Tragically, children and adults with autism are often attracted to water sources such as pools, ponds, and lakes. For instance, drowning is a leading cause of death for a child or adult who has autism. Wandering can occur anywhere at anytime. The first time is often the worst time. Another concern is preparation in the event that you become incapacitated or injured while caring for a person with autism at home or in the community. An informational handout should be developed, copied and carried with you at all times--at home, in your car, purse or wallet. Also circulate this handout to family members, trusted neighbors, friends and co-workers. The handout will also come in handy if you are in an area other than your neighborhood and are approached by the police. If wandering is a concern, contact law enforcement, fire and ambulance agencies. Ask your local 911 call center to "red flag" this information in their 911 computer data base. Dispatchers can alert patrol officers about your concerns before they arrive. When we provide law enforcement with key information before an incident occurs, we can expect better responses.

Alert your neighbors
The behaviors and characteristics of autism have the potential to attract attention from the public. Law enforcement professionals suggest that you reach out and get to know your neighbors.

  • Decide what information to present to neighbors
  • Plan a brief visit to your neighbors
  • Introduce your child or adult or a photograph
  • Give your neighbor a simple handout with your name, address, and phone number
  • Ask them to call you immediately if they see your son or daughter outside the home This approach may be a good way to avoid problems down the road and will let your neighbors:
    • Know the reason for unusual behaviors
    • Know that you are approachable
    • Have the opportunity to call you before they call 911 Knowing your neighbors can lead to better social interactions for your loved ones with autism.

Prevention
If wandering is an issue for your family, consider contacting a professional locksmith, security company or home improvement professional.

Autism Emergency Contact Handout Model

  • Name of child or adult
  • Current photograph and physical description including height, weight, eye and hair color, any scars or other identifying marks
  • Names, home, cell and pager phone numbers and addresses of parents, other caregivers and emergency contact persons
  • Sensory, medical, or dietary issues and requirements, if any
  • Inclination for elopement and any atypical behaviors or characteristics that may attract attention
  • Favorite attractions and locations where person may be found
  • Likes, dislikes--approach and de-escalation techniques
  • Method of communication, if non-verbal sign language, picture boards, written word
  • ID wear jewelry, tags on clothes, printed handout card
  • Map and address guide to nearby properties with water sources and dangerous locations highlighted
  • Blueprint or drawing of home, with bedrooms of individual highlighted



Autism, Asperger Syndrome and Siblings

In producing two videos about brothers and sisters of kids on the autism spectrum, we've conducted 57 interviews with siblings and parents.


During the past seven months, my wife and I have met an amazing group of people.

In producing two videos about brothers and sisters of kids on the autism spectrum, we've conducted 57 interviews with siblings and parents.

People were incredibly open about their lives. About their hopes, fears, and challenges. Most of all, about the ways they've found to make things better for their families. We went into these videos looking for "best practices" about siblings that we could share with other families. We got that and more.

Working on these programs has kept me from writing articles as often as I'd like, so I thought I'd take a break from editing and share a few comments from our interviews.

One of the videos covers the autism spectrum and the other focuses on Asperger Syndrome. The programs are divided into segments to appeal to siblings of different ages. These quotes are from the autism program's segment for seven to eleven year olds, which I happen to be working on today.

Let's start with Alex, a wonderfully patient eight year old whose younger twin sisters with autism used to bite the tails off his dinosaurs and stomp on his Lego space ship, until he learned to put his toys away where his sisters couldn't find them:

"Sometimes when we go in the car, I have to watch my sisters' movies, and it's Barney, Wiggles or Teletubbies, .really little kid shows...but I have to watch it.because that's what you have to do when you have autistic sisters or brothers."

"Sometimes my sisters cry at restaurants so my mom or dad has to take them out to the car, but if they keep crying, sometimes we have to leave. So don't get mad at that if they do that, because it's still just natural, because they haven't learned how to behave very well."

"My sisters learn to do things from me because they watch me. Like when I brush my teeth, they usually find a little toothbrush and they use it and they try to do it and it's making their teeth clean because they're starting to brush their teeth more often..."

"When Eliz and I are on the trampoline, we usually like to jump in the middle, but I like to bounce her...and she goes to the side and I bounce her and she laughs even more...and Emily likes that, too."

"Emily and Elizabeth have begun to ask me for help when they can't get anything or need to know how to get it or do something...they grab my hand and pull me to where they need to go."

"I say, 'Elizabeth, say cracker' or 'Emily, say marshmallow.' But I just keep saying it like that and they learn how to say it."

"...if they want to sit down and there's nothing there, sometimes they come and get you and they make you sit and they sit in your lap. So don't get really mad at that, that's just natural."

You've got to be pretty understanding to be willing to serve as an impromptu folding chair for your sisters. We interviewed Alex's mom, too. So we could at least partly see where he got his great attitude. After these interviews, we could almost hear mom's voice gently counseling, "That's just natural."

Make no mistake, not every child we interviewed was as patient as Alex, but they all had their strengths, and many had adapted to meet their siblings' needs.

Here's what Jacqueline said about learning to deal with her brother's meltdowns:

"Actually, nothing helps unless I do something funny. Sometimes I do funny faces or sometimes I just act silly, like run around the house...and he laughs."

DeP, whose brother is very high functioning and is "better at math than my mom and knows more about chemistry than my dad" had another approach:

"When he tries to take it out on me, my mom steps in. Then my dog comes in and she has this cute little face. She helps out my brother a lot. Then I just pick her up and give her to Cass. And he just holds her."

Other kids help their siblings communicate, Like Elianah:

"When he says something and the person that he's talking to doesn't understand him, I can understand him so I tell the person that Jaeden's talking to what he's saying."

Or Jonathan:

"I speak sign language to Kevin because that's the easiest way to communicate with him."

DeP also was one of the kids who explained how their relationships had improved,

"I get along with him a lot better than I used to when I was about six or seven. We used to fight a lot back then, but now, we help each other out and we're pretty much tight brothers."

It was also great to hear kids bragging about their siblings, like Briceño, whose family discovered that his younger brother, who couldn't speak, had suddenly begun using one of his toys as a writing tool.

"Recinto's strengths -- he's really good -- at his last birthday there was just a big explosion. He loves to write letters on the little Magna Doodle thing and he's really good at that."

During our interviews, we found out a lot about how siblings learned to get along with their brothers and sisters and what parents tried that worked and didn't work. We heard about a range of issues, including kids often feeling that their siblings on the spectrum got more attention from mom and dad.

One quick insight. The families that seemed to be dealing best with autism or Asperger Syndrome made an effort to communicate early and often. It turns out many parents tend to think their kids know more about these conditions than they actually do. You might want to test this with your own kids. Sit down with them and talk. Explain why you're doing what you're doing. Ask them how they feel about things. You may get some input you can use to make things better in your family.

Well, I'm going back to editing videos. I may share more input from the interviews in the next few weeks. This project is sort of my world right now.

With all the help kids need from their parents understanding autism or Asperger Syndrome, you can't help but be impressed with some of the insights they come up with on their own. Like Jacqueline, explaining her brother's lack of speech skills:

"He doesn't really know how to talk that much, but I'm sure he's saying something in his mind."

Wow.

ABOUT THE AUTHOR - Dan Coulter plans to release, "Understanding Brothers and Sisters on the Autism Spectrum," in April, 2007 and "Understanding Brothers and Sisters with Asperger Syndrome" in May, 2007. You can find more articles on his website: www.coultervideo.com.

Copyright 2007 Dan Coulter Used by Permission. All Rights Reserved.