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January 13, 2010
Unique Safety Needs of Individuals with ASDs

By Jeanne Holverstott, M.S.

Out of concern for people with autism in their community, police in Scarborough, Maine, have started adding people with special needs to a database that already includes information about residents with Alzheimer’s disease. A member of the police force who has a child with autism says the information will be useful to have when handling missing persons cases.

Let’s face it; the safety of individuals with autism spectrum disorders in the community has not been a hot topic. Early intervention, etiology, cure, insurance—these topics have captured the public’s attention. Safety becomes an issue when it hits home. Families struggle with it daily; schools face it when a “runner” becomes an issue; and, apparently, bureaucracies can change when broken by personal circumstance.

Personally, the safety of individuals with autism spectrum disorders in public has always been a critical issue for me. My first job working with kids on the spectrum landed me in a suburb of Chicago, where I was assigned to work with Nic, then 5. On my first day, little Nic proceeded to dart directly toward a high-traffic street.

My current job in private practice has reaffirmed the need for community-based instruction. I routinely take groups of children and adolescents to restaurants, movie theaters, arcades, museums. While these trips are invaluable, they are also stressful for reasons related to safety.

At a recent holiday party with six adolescents with Asperger’s disorder, the topic of personal safety emerged. One of the boys suggested that the group play hide-and-seek outside; without hesitation, Melanie retorted, “Are you kidding me? I’m a girl. Do you know what can happen to girls in public? I can be abducted and worse.” Her concerns about personal safety speak to the community at large as well as the autism community. But caution is particularly important for individuals with ASD whose naiveté, social cognition difficulties, and tendency toward stress and anxiety render them easy targets.

I applaud Scarborough’s decision to better protect all of its citizens, especially those who struggle to protect and advocate for themselves. Whether an individual with ASD is in “trouble” or sought out by the law, self-identification by an individual with ASD is difficult. Over the years, I’ve encouraged parents to:

· Put small tags on their children’s shoes because reaching into a pocket for an I.D. card can be hard to remember under stress and can appear suspicious to a police officer.

· Write personal information with a sharpie on the inside of LiveStrong bands.

· Give their child a cell phone with preprogrammed numbers and to practice using it everyday to place calls and to text.

· Select a safe spot in every location in case of separation; in the mall, Walmart, and Target, the video game section is a great (if expensive) start.

At latest count, the population of Scarborough was 16,970. Applying the current 1:150 standard incidence of autism spectrum disorders, Scarborough has approximately 113 diagnosed individuals with autism. I service about half that number of children a week in a city with an even higher incidence of ASDs than the national average. I don’t have connections to the police department, but perhaps you do.

NOTE: Jeanne Holverstott, MS is the autism spectrum specialist with Responsive Centers for Psychology and Learning. She has worked with children on the spectrum in a variety of settings and capacities, including a paraeducator, a home therapist, a teacher, a home provider, and a community-based specialist. She regularly appears on this site’s “Ask An Autism Specialist” Q&A, which can be accessed here.

One Response to “Unique Safety Needs of Individuals with ASDs”

  1. Bek says:
    January 13, 2010 at 9:19 pm

    So important! Thanks for writing this!

    I love the livestrong style bracelets but instead of writing the info on the back I had custom ones made for my son. It is less “obvious” and more durable and not expensive. I think I paid $4.50. It has our phone number and medical symbol.
    I got them through reminderbands.com

    Project Lifesaver also exists in many areas(if not in a specific town sometimes county law enforcement participates)… They partner with lojack and local law enforcement to basically provide lojack for people…
    Here’s a link to the lojack info:
    http://www.lojack.com/safetynet/Pages/index.aspx

    I like the shoe suggestion!

    I also found these and I am eyeballing a bracelet for me (I have type 1 diabetes and other health issues + Asperger’s) and the labels for my son (who is 6 and has Asperger’s)
    http://wellalarm.com/store/products.php?productTypeId=2

    (I like that they notify parents on some of their plans!)

    We did get our son a cell phone that only dials numbers we enter- once he is old enough to use it while out and about (for now we use it to wirelessly send him questions and tasks and reminders while at home- he is obsessed with gadgets so this was a great way to get his attention and get him to stay on task and respond rather than zoning us out)we will activate 911, and other emergency contacts.

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The Summer Break: A Catch-22?

By Jeanne Holverstott, M.S.

Question: It seems like summer can be full of pitfalls for my son with Asperger’s — the structure has gone away, and he’s no longer in contact with classmates. He is content to play on the computer all day, but seems to get moody more easily. Should we treat summer vacation as a long break from school-year stress, or what?  

Answer: Summer vacation presents a contradiction: Children with autism spectrum disorders thrive on structure, routine, consistency. Summer vacation throws these principles of ASD parenting and behavior management in flux.

It’s time to search for activities to fill the day that do not involve electronics. You’ll want to set new rules on Wii, DS, Xbox, PS3, computer and television usage. It’s also important to find meaningful opportunities for interaction.
 
Children with ASDs approach summer with mixed emotions. Many parents probably share this ambivalence. Just like the school year, summer vacation is permeated with ups and downs. So, what do we do with all of that time? Take the following into consideration:
 
·         In seeking consistency and routine, we hope to reduce the unknown and the gray that causes anxiety and opens Pandora’s box. We hope to create a microcosm of predictability in a world of dynamic instability.  Change in the ASD world can be bad. Yet, how helpful and how realistic is our static world? Perhaps the static world we strive for unwittingly weakens the coping skills, frustration tolerance, adaptability and resiliency that undergirds functioning in a dynamic world. Summer could be viewed as a litmus test for how our children with ASD react to change that comes yearly.
·         That being said, I’m not encouraging schedules to be thrown out the door. No, only those game systems. Again, I kid. Make money in this recession and sell them at Game Stop. Schedules are helpful, but overbooking your kids with camps, lessons, and trips might also not be the solution.
·         To help promote a healthy schedule that allows for family time and for time working on those interaction skills, consider picking one or two activities in which you can involve yourself as a parent in some capacity. If your child joins a social skills group, exchange numbers with the other family members and have the kids over on the weekend. If you join a “team,” consider recording the interactions (which many other parents do!) so that you can review your child’s interactions with him or her and compare them to other teammates. If you hear the ice cream truck, make it a teachable moment: Walk with your child to buy that bombpop and shape what develops. In the end, paying for a camp, a class, a lesson is not always necessary. Taking the time to set up meaningful interactions (such as play dates) can provide the same benefit.
·         As for those electronics I suggested you sell, they are a necessary evil as a stress reliever, entertainment and an escape. You can put constraints on game play – the length of time and the time of day – but don’t necessarily follow my father’s adage: The sun is out, you should be too. Video games might prove a nice break midday when the heat is at its worst or after an exciting morning.
 
There is a quote you might appreciate at this time: “The longer the summer vacation, the harder the fall.”

Jeanne Holverstott is an autism spectrum specialist who practices at the Responsive Centers in Overland Park. To ask Jeanne a question about autism, send e-mail to editor@spectrumconnection.net, and put “Question” in the subject line.

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DEVELOPING TALENTS

Intervene, Intervene, Intervene

By Kate Duffy

A while back, Toni, the SpectrumConnection editor, asked me to write about how far parents should go to help their teens on the spectrum land a job. Since then, several of our Hot Topics parents have shared their kids’ job search stories with me, and I realized there was no easy answer to her question. For the most part, though, their stories revolved around the kids’ inability to accurately read situations, to remember instructions and to multitask to make a deadline. Looking at that list, it sounds like business as usual on the job for most of us — which is why it is so very important that our kids start learning about the world of work as soon as they can.

That’s why the short answer to Toni’s question is this: do what you need to do.
And don’t do it alone.
Team up with the people in your life to introduce your teen to the world of work. When you get burned out – and you will – you’ll have reinforcements to soldier on to do the hard work of teaching your kid that he has to work and that not everyone is as fascinated with Pokemon, fighter planes, railroad time schedules as he is. You want your teen to join the outside world in a safe, organized manner, so bring in those folks you think would be good role models and champions for your teen.

How involved should you and your team become with your kid’s job search? There is no one right answer, but remember that our kids are generally younger than their chronological age, so that a 16 year old on the spectrum is more like an 11 or 12 year old emotionally.

The end goal is for your teen to get some work experience and to be out in the world, so he understands more about the way the world operates. Given that, it’s not as important how your teen gets a job, just that he has one.

For many, the first job is sacking groceries. So you definitely want to know your neighborhood grocery store manager. You’ll want to talk to the manager before your teen does, letting him or her know about your teen’s strengths and problems. In addition, you’ll want to let the manager know something about autism, especially how prevalent it is, how it affects families throughout the community. By hiring your teen, tell the manager, the store is helping the autism community, which is loyal to supportive businesses.

Do you need to let your teen know about all your behind-the-scene maneuvering? No, you don’t, and it’s better if you don’t. Each kid is different, and so you have to tailor the approach to the kid. For instance, both of my sons are on the spectrum, but they are very different from each other temperamentally. With my oldest son, Nick, who has a lot of anxiety, I frequently have had to go around his back to get him to try new things. That’s how he started playing chess, which he loves, and is a skill he has made money from for a number of years.

Playing chess on a team and then being the team’s assistant coach for three years was a great experience for Nick. Not only was his chess coach a wonderful mentor for him, he also taught Nick how to be a leader and supervisor. For three years, til he got a paying job as an assistant chess coach, Nick worked with Mr. Cooper and learned the important workplace skills of showing up on time, conversing politely even when you don’t feel like it, and managing others – in this case, kindergartners to 8th graders, not a particularly easy workforce.

When he was 14, he also worked for my friend Necia, building her small business a data base of clients and contacts. Three afternoons a week that summer, he walked to her home-based business a half mile away and got to work. What he didn’t know, though, was that I had asked Necia to let him work for her because I knew she would be a good mentor for him, that he would learn about the world in a safe, organized way with her.

Don’t feel badly about intervening in your teen’s vocational life. There is a lot of competition for jobs right now, and our kids need to be part of a team – even if they don’t think they do. Sign them up for Vocational Rehabilitation services too because the VR counselors will then be a part of your team, which gives you a bit of a breather. Remember, the type of skills it takes to get a job do not come naturally to our teens. That’s why the unemployment and underemployment rate for people on the spectrum is about 92 percent.

So get your team together and remember you are not alone. There are lots of us out there doing behind the scenes coaching with our kids. Just keep the end goal in mind and plug away.

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