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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

ASD Emergency Planning Resources: Video Modeling

Testimony from Linda
Produced by the Autism Society of Minnesota

Click the CC button to view captioning

Interviewer: Hello, Linda. Thank you for coming in. We really appreciate the fact that, your, interested in, Autism Society of Minnesota's Emergency Preparedness Program. And, as a member, we would love to, gather your thoughts about what it means for first responders to understand autism and what it means for families to prepare their children for emergency type situations. And so, welcome and, we'd love to hear from you [thank you] and the importance of this event.

Linda: Thanks. Well, I was... I was thrilled to learn about this project for emergency preparedness, for first responders and for families and for community members. My first thought was I think, first responders would... are wonderful, and... and have all the best intentions for helping our vulnerable population of, individuals with autism, but sometimes they don't know, how to approach some of our vulnerable, family members and community members and, if they had the information, it would be a huge help to them and to, our people in peril. So, I'm extremely excited about it.

My experiences have been, I've been with the Autism Society as a parent, for many years, for actually 24 years, and I have a 28-year-old son who, was always known as, a, person of the hi... on the low end of the autism spectrum which means basically that he had a lot of challenges.

He's...he's not very verbal, has no sense of safety and, from a very young age, under age 3, was a runner, not... not always because he wanted to escape, just because he loved to run. But, it was always a big concern to us and from an early age, we had to rely on the assistance of first responders, of police, to help us, keep our son safe.

So, he is now, Keith, our son, is now in a group home, and he has been actually for seven years, and, we are very... actually more that, for... for more than 10 years, and, we, have been very thrilled with, um, how he's developing as an adult, but he has a lot of issues that make him particularly vulnerable and at risk for danger.

One is that he is a kidney transplant recipient, and he is not able to, really communicate about his needs regarding his health, and if he's without his medication for any reason, he's extremely, at risk for health issues.

Another is, of course, this running thing. Just because he got older doesn't mean that he stopped having the joy of running. Because he has to be watched all the time, I think that like any young man, he likes to get out and have some time on his own.

And, he's not always able to communicate or doesn't care to communicate, that he wants to go someplace, and, there's been a real problem over the years where we've had to, watch him and, find him when he gets lost.

In one instance, he did get away from his group home, it's an excellent place, but he still is... is... can be pretty... pretty sneaky, and he was able to get over a fence, through the use of picnic table. It was in March... early March, and, the ice was, still somewhat on the lake but it was in that melting stage.

And, the police were called immediately, to help locate Keith. As the policemen came and saw him in a park that he escaped to, he...he started to go out onto the ice. And that could have been a...horrible situation for... for everybody involved.

I think that if the first responders had known how to approach Keith, and if Keith had been pre-taught about safety, a little bit more, maybe some of these situations could have been avoided. Thankfully, nothing terrible happened at that time, but it really did make us again realize how essential it is to, always be prepared.

Sadly, in, 2008 on Father's Day, my husband and I received a phone call that totally changed our world, when we found out that Keith had walked away from a camp for adults with disabilities. And, at that point, he had been missing for a couple...a couple of hours and we were terrified.

As it turned out, he was missing for an entire week. Thousands of people searched for him, people from the community, people who never knew him, family members, friends, colleagues. And, thankfully, very, very many first responders, police, fire, people, they were just phenomenal in their dedication.

And, the good news is that after a week of being missed, and being missing, he was found alive. Again, he was out without his medication for week, without his kidney medication. Because of that search, he was, he had E. coli, he had pneumonia, he was covered with ticks, many of them were deer ticks.

He... he was in very, very rough shape and, needed extensive hospitalization after that, but he did come through stronger than ever, and I am forever grateful for everybody and especially those first responders who found him, who were the, the police and fire, fire people.

So, aga... again, it shows how important it is to always be prepared and, to have a game plan and action to help our vulnerable, individuals in our society. That's why I'm so happy that, AUSM has taken on this terrific, terrific, cause and, like I said before, we have members of the Autism Society.

It's gone by different names over the decades, but, for 24 years and, I am so grateful for the information, that they are, giving to, first responders and to family members and to, caretakers. I think it's really, really a great cause. Thank you so much.

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