Since sometime in the 1970s the month of April has been recognized as “Autism Awareness Month” with April 2nd being “World Autism Awareness Day”. It’s a time dedicated to increasing awareness of this disorder that is affecting an increasing amount of the population. While just how many people may be affected is up for debate, the prevalence is growing. So much so that last I heard, 1 in 50 kids are born with a varying degree of the disorder.
You’ll hear different statistics out there than the 1 in 50 I just quoted since there is disagreement between various camps in the Autism Community. Understanding, diagnosing, and much more so treating autism is difficult by the fact that “Autism” is a blanket term covering the many manifestations of “Autism Spectrum Disorder” (ASD). ASD covers a complex array of conditions, symptoms, and behaviors that someone diagnosed as being “Autistic” can display. People “on the spectrum” can be minimally affected, or “high functioning” or can be “low functioning” if they are profoundly affected. I can’t claim to understand it myself and I’ve been as immersed in it as I’ve ever been over the last few years.
Yesterday was “World Autism Awareness Day” and I’m posting this article on April 3rd. You may be wondering why I didn’t post this up yesterday instead of the recap of the fake “news” stories I posted for April Fools’ Day. I waited for two reasons: one being that while Autism affects my life and my family it is still important to show that life goes on every day. Humor is a big part of our family life out of both fun and necessity. Another reason is that I believe there isn’t anyone reading this that isn’t “aware” that autism is a thing that exists. I can’t imagine there is an EMS professional out there who isn’t aware of autism but if you’re not, here’s a link to the Wikipedia page on it, and here’s a link to the Autism Society of America. Go read and become aware. In fact, it’s probably a good idea to go read and understand more about ASD anyway. There is a lot to know. ASD is challenging and complex and even the so-called (and especially some of the self-proclaimed) “experts” may not know as much about it as they claim to. I’m no expert by far and I want to stay out of the politics of the debate so I’ll just say this. If you’ve seen one person with “autism” you’ve seen one person with autism. Every person is an individual and there is no one right way to think about how every person will manifest their symptoms.
So since you’re all aware of autism now, let’s get to the point of this post: increasing acceptance, understanding, and respect. I’m glad that we’re all aware that autism is a thing, as would most parents of children who are somewhere on the spectrum as well as the people who are on the spectrum themselves. However, I’m sure they would be even happier if they could simply run an errand with their child without having to fear the reaction of other people in public. I’m sure they would really appreciate people not reacting to them or their child out of fear and ignorance should the child manifest typical behaviors or make noise when they go into a restaurant to eat a meal. As a paramedic, I can say that we would really appreciate not having to live in fear of calling 911 and having the responders have absolutely no clue of how to behave towards our son. That’s what I’d say people whose lives are affected by autism really want. While “awareness” is super-neat and all, let’s move on to the next step of making life a little less hard for everyone. Chances are that nobody reading this blog is going to be capable of finding an effective treatment, but everyone reading this can do their part to make the disorder less of a bad thing by working on their own behaviors towards people on the spectrum.
As you may know, my girlfriend Amy has been a huge blessing in my life. Her son, Connor, has some special needs, one of which is being on the autism spectrum, specifically diagnosed as PDD/NOS or Pervasive Developmental Disorder/Non Other Specified. Living with Connor has changed my life in many ways and has taught me more about myself than I thought I could learn. I’m different now, and hopefully it’s for the better. ASD is very complex and I’m as aware of it as I think I can be but I wasn’t always this way.Amy has shown me a lot that I didn’t know I didn’t know. When Amy and I were early in our relationship, she used to come and ride with me on the ambulance on a somewhat regular basis. EMS was as new of a world to her as her world was to me and while never really got anything all that complex while she was riding with me, we did have one call that stands out.
We were the 911 service for a smaller city where everyone knew everyone and the public safety community all hung out together. It was normal for the police, EMS, and firefighters to eat their meals together and we all listened in to each other’s radio frequencies. So one day when I heard the police get called to the local supermarket for “A child wandering the parking lot alone who appears to have autism.” We decided to head over there ourselves with the ambulance to see if we could lend a hand. Amy was with us and she was very interested, and I was the shift officer and approved of us jumping the call.
When we arrived, we found the police out with a male child who couldn’t have been more than 10. He was very afraid of the police, appeared to be non-verbal, and was walking away from them whenever they approached him. When we arrived, he was walking back into the store. I walked up to the police sergeant and offered our assistance. I told them that our ride-along had a child with autism herself. That seemed to be enough for them. They parted like the Red Sea and let Amy take charge without knowing her from anyone. We followed the kid through the store keeping a respectable distance and watched him as he searched the aisles. Finally, the boy walked up to a man who was perusing the frozen foods section and got uncomfortably close to him. Being “official” like I was in my EMS uniform, I stepped between them until Amy grabbed me. “That’s his dad Chris, chill out.”
It was his dad and he was not aware of the fact that two paramedics, three police officers, and a ride-along were very concerned about what his child was doing wandering the aisles and parking lot of a grocery store. The kid hadn’t done anything wrong and neither had his father, but we were all highly aware of the fact that we were uncomfortable dealing with a situation that was normal for the father of the child. Sure, he probably should have been watching the kid more closely, but how often would the parents of a typically developing child let their 10 year old walk alone in a grocery store. I’m not overprotective and I know that my 9yo step-daughter is capable of fending off kidnappers should I let her go pick out a box of cereal while I look for a gallon of milk… should this father be condemned for the same?
This event got me thinking that I really didn’t know as much about autism or the world of special needs children, but an event Amy and I shared later really hit home for me. We were watching Annie, the girl-child, play a little league game in a local park when I saw a man mowing his lawn which was adjacent to the ball field. He mowed row after row of grass all with a teenage boy following him in lock step about 3 feet behind. Back and forth they walked together silently, the man mowing and the boy following. I thought it was odd but Amy’s perspective snapped me into focus, “He must not be able to leave his son alone in the house while he mows his lawn. I used to have to mow my lawn at night when the kids were in bed because I couldn’t leave Connor alone for that long.”
At that moment, I realized that there was a whole world I didn’t know about. Even though I had been a paramedic for years and thought that I knew some things, I was ignorant to how the special needs community lives and gets through daily events that are easy and normal for most. I was ashamed. I realized that the reason the police and both my partner and I were so quick to let Amy handle the little boy with Autism in the grocery store was because we were scared. We didn’t know what to do with something we didn’t understand. Give us a car accident, a robbery, a cardiac arrest and we’d be fine working as a team… but give us a small boy that didn’t understand that we were there to help him and couldn’t communicate back with us and we failed.
As a paramedic, I live in fear of the day that I have to call 911 for my step-son. I know most of the EMS people that would respond to a call for help in most of the jurisdictions that we travel in and while darn near all of them are top-notch, I’m still scared. I’m scared because I would be scared of the medic that I was just two years ago. Sure, I was “aware” of autism as being a thing, but I had absolutely no understanding of what it meant. I had no idea of how to manage behaviors from a person with ASD, and I really didn’t know how to manage my own behavior towards them. I had awareness without understanding. Even though now I’m much more well-versed in my behavior towards people with ASD and other special needs, I’m still not as good as I want to be. The subject is complex and requires a lot of study and personal growth. One day I might be as good as I want to be but today’s not that day. I still have a lot to learn.
As I said before, “Awareness” is super-neat and all and as the step-dad of someone with ASD I thank you for knowing that autism exists. Now I ask you to take the next step and give us all a little acceptance and understanding. Nobody here is probably going to find the next revolutionary therapy but we all can stop being rude when we see someone with ASD having a meltdown in public. We can give a little understanding and courtesy when someone with ASD is being themselves in a way that isn’t quite within the social norm because we understand they cannot help it. As caregivers, we can react with kindness and patience when we realize that someone’s communicative needs and thoughts on the situation at hand aren’t what we may expect them to be.
So you can go blue for autism. You can proudly display your puzzle-pieces. Heck, you might even put a ribbon on your car. However all I’m asking is that you give people a little leeway to be themselves and just be nice to people. Not everyone is the same and we all need your respect and maybe even a little help sometimes. That’s what would be really nice.
So in honor of all of those with Special Needs and also the people who love them, Happy Autism Month y'all.
If you’re looking for training for your police, fire, or EMS agency on Autism, I recommend this group: http://autismalert.org/
If you’re looking for a window on understanding the world of families with children who have special needs, I recommend the “Imperfect community” at: www.ShutUpAbout.com