Posted by: myautisticmuslimchild | February 23, 2012

Autism and Wandering

Autism and wondering… these are dangerous combinations. I wanted to write about this problem for a very long time, but my recent experience prompted me to be more proactive about this issue.

The other day my doorbell rang in a very early morning hours. In my house if the phone, or the doorbell rings in odd times like this, usually doesn’t mean good news. I sprung out of my bed, and nervously asked who was it. It was security from the front gate, asking me if I am a mother of an autistic child.

When we moved here I made sure that people know that my son is autistic. This place has the least of the tolerance of special need child, and I do not wanted any misunderstanding with and about him.

So they came to tell me that they found my son at the front gate next to a busy street wondering bare footed, no shirt on only a pants. My heart dropped, and in complete disbelief I ran to my son’s room.  He was there in his bed, sleeping peacefully thank God for that.

As I opened the door, I told the security people that my son is sleeping in his bed, and the child they had with them is not mine. (it was a little girl about 4 yrs old.)  She had one of the person’s army jacket on to cover, and she just wanted to slip into my house for warmth. The two nice man were confused and had no idea what to do with this little girl who did not speak English, or any other language they tried to communicate with her. She is a non-verbal child, had many of the autistic characteristic. I told them that she looked familiar and I seen her before at the playground. That was the start, but we still did not know where does she live. After they left in searching for her home, my son just got up and I could not stop hugging him.I was so thankful that he was at home not wandering around and getting lost.

Wondering, and bolting is a very dangerous behavior for ASD kids. Many injuries and even death had been reported from this kind of behavior, yet very little had been done  about this. There are times when the state takes custody of a wandering child, removing them from their own home and accusing the parents of neglecting their own children. Read the story about Ayan.

Because of the need for more understanding and awareness IAN conducted a national survey about wandering of ASD kids.  The preliminary findings are absolutely frightening. According to the initial findings about half of the children between ages of 4 to 10 years old, who are affected by ASD tried  to wonder away from their safe environment, parents/ caretakers. See the graph here.

The more frightening part of this data is that they report that about 35% of these children are never or rarely able to communicate their personal information to others. Just like this little girl, who was found by the army security near the busy road, but luckily she was found by these trustworthy people who kept her and worked very hard to find her home.

Sadly only a small percentage of a parents report that they get any advice from mental health care professionals about wondering. I personally never got any tips about wondering until just recently. The Orange county Police Department launched a program registering ASD and other special needs children with the 911 system. I filled out a paper about my son’s medical history, medicines, everyone who lives in a same household, his schools and persons who are able to pick him up. The program is to help the first responders understand the child’s needs, interest, condition, and medical information. So if I  call 911 my registered phone number will bring all the date on the screen for operator, so they can advise the police and paramedics in case of any emergency. I think this is a good start, and I certainly advocated this service to many other parents with autistic children.

Eloping, wondering, bolting out is a very important issue, that has to be addressed by parents, police, schools, health care professionals, and first responders. Many lives can be saved, many stressful hours can be eliminated. We must acknowledge that wondering is a leading cause of death, and severe injuries amongst ASD kids. We have to be more proactive, and make awareness about this problem.

I personally tell people about my son’s condition where ever I might be. I do get disapproval by family members, and I been accused of attention seeking as well, but I do not care anyone’s opinion about this. I am the one who is taking care of this child 24/7, I am the one who is responsible for his safety as well. To be honest, that early visit from security put some peace in my heart, because. I know if by any chance my son will go out on his own, security will be ringing my doorbell. So if this is what it takes to make awareness to spread the word about a child’s condition, so be it. Is this is attention seeking?…Oh yes, for a good reason. What matters at the end is that my child is safe at home, and people looking out for him. If anyone sees him being alone without me, I know my phone and my doorbell will be ringing right away, and that is what I want to happen, for his sake and my peace of mind.

Here are some resources you might want to read about to be better prepared.

http://masonalert.com/

http://www.childmind.org/en/posts/articles/2011-7-27-autism-and-wandering-risk-kids-worry-parents

http://www.nationalautismassociation.org/bigredsafetybox.htm

http://www.awaare.org

http://www.awaare.org/index.htm

http://www.awaare.org/socialstories.htm

http://www.autismsafetyproject.org/site/c.kuIVKgMZIxF/b.5058283/k.BE40/Home.htm

http://www.autism-society.org/living-with-autism/how-we-can-help/safe-and-sound/take-me-home.html

http://www.projectlifesaver.org/

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Responses

  1. I cannot recommend the Family Wandering Emergency Plan on the AWAARE website enough. Everyone should check it out!!!

    I happen to be the Customer Care Specialist at SafetyNet by LoJack. SafetyNet is a service where the person at risk of wandering wears a bracelet 24/7 that can be tracked by search and rescue personnel in the event they wander and go missing.

    Anyone who is interested should check out our website http://www.safetynetbylojack.com and check for availability in their area. Right now we are waiving the initial $99 enrollment fee (until the end of April). I want people to take advantage of that. Also, if the $30/month might be an issue, give me a call because I work with matching up available grants or funding with folks who need it.

    If anyone has any question, please give us a call at 877-434-6384 or email me directly at jmorrissey@safetynetbylojack.com

    Best,
    Jennifer Morrissey
    Customer Care Specialist
    SafetyNet by LoJack

  2. MashAllah, thank you for raising awareness about this. So many issues relating to Autism that the wider community would have no clue about. Alhamdullilah it was nice to know that the security guards recognised that the child was autistic and that she was safe in your home rather than wandering the streets. I wonder if her family even knew she was missing or if they were going out of their minds with worry?

    It’s so refreshing that you speak so openly about it as well. It’s great that you ignore people who accuse you of ‘attention seeking’. In truth it has nothing to do with attention seeking but rather it has more to do with the fact that they are in denial about the seriousness of the condition and wish to remain ignorant and not have to hear about it so they wished that you prioritised consideration of their ignorance and denial instead of your child’s best interests. It’s a very common attitude and you’re doing the right thing by simply not adhering to that sort of nonsense mentality. I’ve encountered some similar responses when it comes to discussing my own disability.

    Aside from ‘attention seeking’ the other accusation I get is that I “dwell on it too much”. There’s an implicit assumption that they think we can take a break or a holiday from our illnesses every once in a while or have a week where it doesn’t impact our lives in some way so we could just get on with other things without even having to think about it. There’s no concept of how relentless this sort of thing can be or how all encompassing it can be in impacting every single aspect of life from grocery shopping, to visiting friends, to dentist appointments, to getting a haircut- none of it can be handled in a ‘normal’/typical manner without plans and strategies and that leaves little room for just chilling out and enjoying the moment.

    • Thank you Neelu for your comprehensive comment. As always, a great addition to my post.
      I agree with you, many trying to follow the ostrich politics (putting the head into the sand, and if they do not see they assume things do not happen).
      Anyways. Its been almost 8 yrs I am dealing with issues in a daily bases, and that made me stronger, and I really do not care about ignorant remarks. It does affect me time to time, but I would not be a human if it doesn’t.
      This is something all ASD parents have to consider and prevent. We must make awareness, b/c many shamed of what happens with their kids, so they just ignore many warning signs.
      As for this little girl I wrote about, unfortunately her parents are in major denial, and I do fear for her safety. They have a nanny for her, assuming she will be alert 24/7 for the kid, but this event just proved it that she wasn’t aware of the early morning adventure. I offered the mother some links for preventative tips and alarms, but she flat declined, and told me that her child is not like mine. So all is well, I hope she will be always safe and ok.


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