Home > Family Services, In Their Own Words > Making the World Safer for People with Autism

Making the World Safer for People with Autism

This is a guest post by Gene Bensinger. Gene is on the Advisory Committee for the Autism Safety Project, and a parent advocate on issues affecting adults with autism.

November 22, 2005. It was just before Thanksgiving. I was reading the Chicago Tribune when a headline caught my eye:  “Autistic Man Dies in Police Struggle.”  The incident had taken place just two days earlier in a much sought after group home located in Des Plaines, Illinois, a fairly affluent, safe suburb of Chicago. The article went on to describe one escalation after another as police tried to subdue the young man with autism, first in his house, then in the fenced-in backyard. The police were called to the home after the young man had severely bitten a caregiver who had tried to restrain him, the reason for which we’ll never know. 30-year-old Hansel “Yusuf” Cunningham never made it home to spend time with his family that Thanksgiving that year. I thought to myself, “How in the world could this have happened?”

As the parent of a then 12-year-old son, I had an emerging understanding that my easily redirected child would soon be a physically bigger and much more visible teen. He would experience the effects that “raging hormones” deliver during puberty. He would ultimately live as an adult in a community that might appear to him a hostile environment of loud noises, confusion, and chaos. So I decided to study the issue of autism safety in detail.

I learned that safety isn’t yet the important part of the autism toolkit it needs to be for everyone in our community. Unlike so many other issues, this is one where the autism community shares widespread agreement. Let’s build some bridges and speak with one voice so that all of us can live safer lives.

As I see it, a big reason that problems escalate out of control is that the behaviors we see in the autism community on a regular basis are the exact same behaviors law enforcement, security professionals, first responders, and others like school administrators have been instructed to recognize as potentially uncooperative, hostile, or even threatening. The problem is that the “book” they used for training is wrong. The good news is that many are rewriting their “books” and getting the training they need. But there’s still a huge gap to bridge when you consider the target audience we need to reach is over 2.5 million professionals!

Rather than risk triggering a tragedy like the one highlighted above, we as a community need to teach law enforcement and others who interact with people on the spectrum to recognize some simple, basic markers, use common, easy de-escalation techniques when needed, and call for help and support from trained specialists. But it’s also not fair to put all of the responsibility on others.

I don’t think we’re doing nearly enough in the autism community to safeguard ourselves or those in our care.  Everyone needs to understand and work to mitigate the main risks people with autism may face, like wandering, drowning, and becoming easy targets of crime and abuse. These risks are very real and often appear when least expected.

That’s why I am thrilled that Autism Speaks stepped forward to create the Autism Safety Project, a stand alone website that links professionals, individuals with autism, parents, teachers, judges, and others to the tools they need.  If you haven’t yet visited the site, please do! Then reach out and make sure the local professionals in your community or on your team receive specialized training.  If they haven’t yet, ask them to! My experience has been, after they study the issue, the answer is always, “Yes.”

  1. Katie Wright
    June 7, 2010 at 1:32 pm

    So important! It is great AS is making this a priority.
    50 ASD children and adults have died this year due to totally preventable circumstances. It is so heart breaking. The federal govt needs to support this safety project just like they do w/ the Alzeheimers population.

    It is so important that everyone recognize how easily and quickly a ASD child can wander off. Their parents do not deserve blame. Many ASD kids have no awareness of danger and quickly find themselves in scary circumstances. As few months ago a Canadian autistic boy froze to death less than a mile from his home. In the span of minutes he sneaked out of the house and quickly got lost. This boy was nonverbal and could not response to the dozens of rescuers calling his name. He died alone and terrified.

    We desperately need a security device or bracelet to prevent these horrible and tragic deaths.

    • July 5, 2010 at 5:25 pm

      Please check out http://www.idpup.com and its primary offering, the ID Pup System of Personal Identification. This is a simple and unique identification system for those, of any age, who are non verbal.

      Regards,

      Drew deGanahl

    • November 12, 2010 at 12:18 pm

      Hi Katie,

      We are continuing to spread the word of our unique, non-technical and discreet ID Pup System of Personal Identification.

      We also appreciate the efforts of those parents and families who are utilizing our system in getting the word out, as well.

      Most of my efforts are geared to alerting 1st Responders of the meaning of the ID Pup logo and its “hidden” emergency contact information.

      Please let me know if there are any groups or communities that you are involved with that I can send information to.

      Regards,

      Drew deGanahl

  2. Brenda Lee
    June 14, 2010 at 4:21 pm

    Ckicking to site now. My son is 5 and a year ago I called fire, sheriff to find out what registry they have in case of an emergency. They said my area did not have anything in place. I am concerned in case of fire starting, son getting lost or simply a medical emergency. I guess I can just get a medic alert bracelet. Maybe start a campaign for street sign in my neighborhood or post one on my lawn and door bell.

    • July 5, 2010 at 5:27 pm

      Hi Brenda Lee,

      A unique identification system for non verbal folks has been developed and is now registered and patent pending. This is the “ID Pup System of Personal Identification”. This system was developed specifically for those who have trouble communicating and who are also tactile defensive.

      We want parents and families of those in the autistic spectrum to know that this system may help to give them one more level of care for their loved ones.

      Regards,

      Drew deGanahl

  3. diana
    June 18, 2010 at 10:41 am

    my son is 20 years old and the city has just started a pilot registry this year .. we are having some issues with my son, and i am terrified to go out alone with him anywhere …

    • July 5, 2010 at 5:28 pm

      Hi Diana,

      A unique identification system for non verbal folks has been developed and is now registered and patent pending. This is the “ID Pup System of Personal Identification”. This system was developed specifically for those who have trouble communicating and who are also tactile defensive.

      We want parents and families of those in the autistic spectrum to know that this system may help to give them one more level of care for their loved ones.

      Regards,

      Drew deGanahl

  4. Lesley
    June 18, 2010 at 4:24 pm

    I have a 9 year old son on the spectrum who is a ‘runner’. He will just take off out of the house early in the morning when I’m still asleep. They have GPS tracking tags that can be sewn into their PJ’s, shirts, etc. There are problems though. Number 1- they’re expensive and I have not been able to find any funding for them. Number 2- either myself or the local police would need to purchase the tracking system. Once again finances are an issue. I use baby gates and alarms on doors and windows that squeal loudly when opened. Once again though, my son is getting older and smarter and has learned to shut off the alarms. He hasn’t found a way thru the gates yet, as I stack them in the hallway outside his room so he has access to the bathroom. Problem is, I have an old bladder…I’m 49, and the gates are between my bladder and the bathroom in the middle of the night. Nothing is perfect but I do the best I can. I also have Medic-alert bracelet and necklace for him to wear. Unfortunatly, his sensory issues won’t allow for him to wear them….yet. One day. Like I said….I do the best I can.:)

    • July 5, 2010 at 5:29 pm

      Hi Lesley,

      A unique identification system for non verbal folks has been developed and is now registered and patent pending. This is the “ID Pup System of Personal Identification”. This system was developed specifically for those who have trouble communicating and who are also tactile defensive. The website is http://www.idpup.com.

      We want parents and families of those in the autistic spectrum to know that this system may help to give them one more level of care for their loved ones.

      Regards,

      Drew deGanahl

  5. lydia
    June 26, 2010 at 12:30 am

    I have a fourteen year old son who also has a tendency to run out of the house when he is anxious. I am now listening to the professionals who recommend that I change the door locks for a combination-keypad lock on the inside of the door to prevent my son from running out of the house. I hope this will work to keep him safe and to give me, his siblings, and caregiver, somewhat of a peace of mind! We want to keep him safe and it is a constant source of stress every time he attempts to run far away from the house. Lets hope this method will work….

    • Angie
      July 2, 2010 at 5:28 pm

      Lydia –

      That works! I have also tried the security locks that require a key to exit and enter. I also had window blocks put on certain windows in the house. Our local MRDD provided the window blocks. My son is 12 and a few years ago he had a habit of running out the door and opening the window on the first floor to get out of the house. It was truly a HUGE burden lifted to install these safety measures. It is rare that he even attempts to exit the house now! Good Luck!

    • July 5, 2010 at 5:29 pm

      Hi Lydia,

      A unique identification system for non verbal folks has been developed and is now registered and patent pending. This is the “ID Pup System of Personal Identification”. This system was developed specifically for those who have trouble communicating and who are also tactile defensive. The website is http://www.idpup.com.

      We want parents and families of those in the autistic spectrum to know that this system may help to give them one more level of care for their loved ones.

      Regards,

      Drew deGanahl

  6. July 5, 2010 at 5:22 pm

    A unique identification system for non verbal folks has been developed and is now registered and patent pending. This is the “ID Pup System of Personal Identification”. This system was developed specifically for those who have trouble communicating and who are also tactile defensive.

    We want parents and families of those in the autistic spectrum to know that this system may help to give them one more level of care for their loved ones.

    Regards,

    Drew deGanahl

    • BW
      August 8, 2010 at 10:31 pm

      Making authorities aware of autism and safety measures on a whole is good. Government, schools, businesses in the service industry that deal with identification systems might ought to have at least a touch on the subject to consider. Please consider telling those of authority about it, not just us and our family and friends. By the way, I am getting tired of seeing the same advertisement again and again. This aspie is getting tired of it while reading, sorry, but I’m being honest as I can. Anyways, everywhere we go, let people know!

  7. November 12, 2010 at 11:31 am

    nice info here ..thks

  1. June 9, 2010 at 7:15 am

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