Tuesday, March 13, 2012

A Real Concern

If you are an autism parent, you have all sorts of information stored in your brain that B.A. (Before Autism) you would have never imagined knowing. You know “1 in 110”. You know about self-funded and fully funded health insurance. You have learned a string of acronyms that made your head spin when you first heard them, but you now rattle off like a maestro conducting Beethoven’s 5th.

If you have done any investigating into research and funding, I am also certain you have come across, as I did when researching for my “Fixing” Autism video, that more children will be diagnosed this year than with AIDS, diabetes and cancer combined.

This is a pretty startling statistic. But bring that statistic up, and right away proponents of other causes go on the defensive. The most common argument that I have seen used is the following:

“AIDS, diabetes and cancer will KILL you! They are terminal! I have never heard of anybody dying of autism!”

It is usually also preceded or followed by insults.

As I have stated many times, nobody is holding a “Condition Off” where my kid’s disorder is worse than yours. It is simply pointing out and making people aware that we can do more to fund autism research.

The problem is that you can see how little these people know about autism and the challenges that parents and individuals on the spectrum face. A fairly common trait amongst those on the spectrum is a lack of understanding or feeling of self-endangerment. If you are not familiar with this characteristic, let me explain it to you.

Bianca LOVES to swim. The problem is, she doesn’t know how. She can manage with floaties or a life-jacket, but left to her own devices, she doesn’t know how to do the physical act of swimming. Walk around a pool with Bianca though and you would never know it. If you let go of her hand for a second, she would walk right into the pool…. happily and without fear. She wouldn’t care about how deep the pool was or if it was 35 degrees outside. She likes to swim. She LOVES to swim. It was one of her first proclamations and songs that she made up herself. It goes like this, “I love to swim. I like the flowers!” Both statements are true, but her swimming fascination is far more dangerous than her floral one.

If I play with Bianca outside of our house, Bianca will walk into the street without even looking. It is such a concern that I don’t often take her outside to play unless I can be right be her side. I have three kids ranging in ages from 6 years of age to 20 months. Keeping Bianca and my young son safe at the same time is a challenge for any individual. You need two people to keep them safe.

When we are inside our house, if a door is unlocked leading to the outside, Bianca will open it and take off... regardless of what she is wearing and how cold it is. This actually happened to my wife not long ago. She had our three kids in the living room and went to get the clothes out of the dryer. She came upstairs into the kitchen to hear our middle daughter yelling, “Mommy!! Mommy!! Bianca is running all around the neighborhood!!”

My wife panicked as she caught a glimpse out the kitchen window of Bianca heading to our neighbors backyard in 30 degree weather without shoes or socks on and snow on the ground. She was heading for our neighbors covered pool. Luckily the Mrs. has a good first step and grabbed Bianca just as she was getting ready to crawl onto the pool cover.

It could happen to anybody. It could have been me. We thought we had taken enough precautions with two locks on the door and a child-proof doorknob cover… we were wrong. Our lesson was learned and we now have another deadbolt about 6 feet up on the door and we lock all 3 when we are in the house. We even have resorted to a lock on the outside of Bianca’s bedroom door so that once she is in her room, she can’t get out. I resisted that for a long time because I think of fires or some emergency which would require Bianca to get out of her room, but as my wife pointed out, there is a far greater chance that Bianca will wake up and leave her room than there is that there will be an emergency.

Luckily our lesson was learned at the expense of a few skipped heartbeats and a week of sleepless anxiety for my wife. Countless other families have not been so fortunate.

Aspergians face danger as well. I have no personal experience with this, but you read about it often. The story usually goes, an Aspie is agitated, authorities are called and things end tragically. Due to accompanying anxiety or social challenges, a person with Asperger’s may not react in typical fashion to law enforcement particularly if that officer has not been trained in handling individuals on the spectrum, or is not aware that he/she is dealing with somebody with ASD.

Then there is always the ever present problem of bullying and depression that can lead to suicide. Not an autism-specific issue by any means, but if a young person on the spectrum is being bullied, I think it is safe to say that they have a lesser chance of seeking out the appropriate help than neuro-typicals.

So what can we as parents do? I would suggest developing a relationship with your local police department. Introduce them to your autistic child (no matter the age) and learn the officer’s names. Get a GPS bracelet for your child that can help track them should they wander off. Secure your doors and windows with locks and/or alarms. Make certain neighbors know that you have a child with special needs and ask them to secure their gates if they own a pool. Ask your town to place a sign on your street warning traffic to slow down.

All you have to do is Google “autism dies” and you will understand quickly what I am talking about. Autism may not be terminal… but it can kill you. There are countless stories from across the planet of children and adults on the spectrum dying as a direct result of their autistic traits.

Before I start getting slammed for a “campaign of fear” let me say that I am not bringing this up to scare parents or to get sympathy from people. I am bringing this up as a genuine concern. It is part of my reality. I fear not being able to protect my child enough. She is 6 now, but she is getting smarter and bigger every day.

I also bring this issue up to counter the argument that autism can’t kill you. If you still don’t think it can, look up Stephon Watts. Tell his family that autism can’t kill you. Or for that matter, why don’t you contact the families of this short list that I have compiled of kids on the spectrum from loving homes that died way too soon.

John Burton – 7 – Aurora, IN – Drowned to death.

Mohammad Usman Chaudhry – 21 – Hollywood, CA – Shot to death by police. (family awarded $1.7 million)

James Delorey – 7 – Sydney, N.S. Canada – Complications from hypothermia after running out into a blizzard.

David DeSantiago – 11 – Bakersfield, CA – Hit by car.

Devine Justice Farrier – 11 – Seattle, WA – Hit by car.

Kieran (no last name given) - 6 – Geelong, Australia – Hit by train.

Adlai Kugblenu – 8 – Bernards, NJ – Drowned after wandering from home.

Bernard Latimore – 9 – Ocala, FL – Drowned in neighbors pool after wandering from home.

Charlie Manley – 16 - Chicago, il – Fell to his death.

Blake Morrell – 4 - Cushing, OK – Drowned in pond after wandering from home.

Sean Taglione – 12- Troy, Michigan – Hit by car.

Godswill Udoh – 5 - St. Paul, MN – Hit by car.

Trevor Varinecz – 16 – Shot to death by school safety officer.

Kristina Vlassenko – 10 - Arvada, CO - Drowned.

Stephon Watts –15 -  Calumet City, IL – Shot to death by police in his own home.

Au-Juna Banks-Taylor - 9 - Mesa, Arizona - Hit by car.

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  1. So true, Lou, everything you say is so true...
    I think about how many times we have saved our son's life without even knowing we were doing it, just preventing it from happening. 98% of the parents with a 4 year old child will never know how it feels to know that the only way to help your child is to never , ever let the guard down, not even for a second. Communication is key between me and my wife, we don't take a phone call without the other knowing that we'll be distracted for a few minutes, nonetheless a shower. We always know where each one of us is and where is our child. 98% of parents probably think that we are overprotective of our autistic child, we just don't want to become part of the statistics . Thank you Lou.
    Vic, Anna and Andre.

  2. Hi, Lou! I know well the terror of looking away for a few seconds and "losing" my little guy. Ryan is 4, and doesn't speak, so there's no answering my frantic calls. Although our house is surrounded by a wall, he has been able to get out the gate without our knowledge. Janet

  3. This is so true, and so scary, and so devastating every single day, actually every awaken minute in the day. I just hope for our guard to be alert as it should be,and their behavior geting a bit prone to self-preservation in that matter..in time.

  4. What you say is so true Lou just a few weeks ago when I was trying to adjust my son's car seat and he was right next to me Marc almost ran off and luckily he didn't get hit by a car.The autism itself doesnt kill you but the fact they are unaware of fear does and their sorroundings

  5. Thank You for your post Lou! It's so true, we have to stand up for our kids, for Autism, and our rights as parents. It's hard to know where to start when standing up for Autism, but you are an inspiration. I found your blog through your powerful "fix you" video. I cry every time I watch it!

  6. I've been following your blog for a while now, and in yesterday's post on Autism Dad Blogs, I linked it, along with some others. Take a look:

  7. Wow I never knew that the 16 year old kid that was shot by the school safety officer was autistic. I attened that high school graduated in 2003 and when I attended it that same officer was at my school. It's tough to say what I would have done in that same situation, and it makes you look at things in a different light knowing that I have an autistic son myself.

    Anyways I love reading your blogs, and your "fixing" autism video really touches my heart. I cry everytime I watch it. Thank you for posting these blogs, and I will continue to read them, and hopefully one day read the blog that states "They have found a cure!" Until then I will continue to spread awareness, inform others, and raise funds in the hope that one day we will have the answers to the puzzle and have a cure.

  8. This is my greatest fear. That my son, who is currently 2, will get outside.... Because if he does, he's gone