What I want the community to know – (as a parent of an autistic child)

Portion of my June 2013 Essay – Essay is broken down as blog posts into 4-5 parts. All posts derived from the essay will lead this message to allow you to avoid redundancy if you have already read it.

For the essay in it’s entirety, use:

WHAT I WANT THE COMMUNITY TO KNOW

The following are just a few things I have listed as things I, as one humble man and father of an autistic daughter, thought the public should know.
1- I (the parent) did not choose this path, it chose me. I am just making the best of it that I can. If autism is affecting you for a moment, a minute, an hour, a day, maybe its autism’s way of choosing you, too. I am sorry if this burdens you, but it’s a big part of my life FOR THE REST OF MY LIFE, I have accepted it as I have accepted my own child.
2- Bullies are not what they used to be. Now, it can take the form of an elderly person who does not like their afternoon nap interrupted. It can be school administrator or teacher of my other child that wants to make my OTHER CHILD an example for tardiness or homework issues (this is partly derived from the fact our efforts are divided between to two different schools because the local school isn’t equipped for autism). It can be a friend or family member who doesn’t think you are doing enough (or the right therapies) for your child. Bullies can take many forms and while they are not necessarily formidable physical opponents as would be with a common definition of a bully, they arm themselves (or try to) with home owner’s associations, school districts, CPS, police, neighbors, the list goes on.
3- My child is not a devil child (and, yes, I have been told this among other things), but I can see how it might appear that way if you don’t understand. If you choose not to try to understand, I can’t help you, I am sorry.
a. Feel free to call the police if you don’t like what you hear, err on the side of caution in the name of keeping kids safe. It will be good to see them. It’s been days. They know us by now….and they like us. Most of them have seen autism and know a good, dedicated parent when they see one.
b. Autism is more than a social disorder. The autistic mind is a tumultuous place because autistic people tend to have a difficult time finding consistency in their environment and with how they interpret sensory input. That means they have a difficult time figuring out how to respond to what their five senses are telling them, how to respond to them and how to predict what will happen next. The “odd” and repetitive behaviors and noises they exhibit are primarily caused by their brain making some sort of sense of it all.
c. Tantrums happen and it can get ugly. Being in a constant state of uneasiness can cause an overwhelming feeling that would make any person have a short fuse. Sometimes, the slightest variances in an autistic child’s environment or contradictions to their expectations can create a level of anxiety that is on par with what a typical person would have in a war zone. A “fight or flight” response can be a regular occurrence and difficult to predict.
4- I am probably not as bad a parent as you think I am. And to assume otherwise might be short-sighted.
a. Autism is a spectrum disorder. Every individual autistic child is unique and there are an infinite number of factors in which someone might interpret an individual child’s strengths, weaknesses and sensitivities. What might work for one autistic child might not work for another.
b. The way you guide and/or correct behavior with an autistic child can be counter intuitive. What might be a deterrent for a typical child might be reinforcement for an autistic child. In fact, with autism, what can be a reinforcement of behavior one moment can be a deterrent the next and vise versa. Behaviorally speaking, autism can be a moving target.
c. We are sensitive to how our child’s noises and behaviors affect others. However, understand that we are constantly exposed to it. In order to not have to lock our child up in a padded cell (or have ourselves need to be locked into a padded cell), we have developed a level of tolerance to it that maybe you have not. What you see as a disruption, for us may be background noise. We have to rest, too, but sometimes we rest amongst what you would see as chaos. Afternoon naps and sleeping through the night and quiet when we are sick or have a headache are privileges that we are accustomed to being denied. We are also used to our being interrupted and realize that takes some getting used to.
5- People must co-exist.
a. If you absolutely cannot live with something that my child is doing or saying, please address the issue in a direct, forthright manner. Don’t hide behind the homeowner’s association, the police department or the CPS unless there truly is a concern for yours or someone else’s welfare.
b. Don’t stew about it. I don’t need someone showing up to my door frothing with anger. If you fear confrontation or can’t keep your emotions in check, find a friend that plays well with others to be a neutral third party. Regardless of how you decide to do it, be ready to compromise, that’s how conflicts are resolved.
c. Here is the freshest thought of all. Why don’t you get to know me? …preferably before there is a problem. If you already have a problem, might it be possible to step out of your comfort zone for a little while longer to allow us to develop a relationship? Aren’t conflicts more easily resolved amongst friends than amongst strangers?
6- Autistic people have rights. When people cannot resolve conflict among one another and have reached the limits of compromise, they must defer to the law. Federal law is federal law. State and local laws can vary by location, but they all are fairly consistent. Autistic people are considered “people with disabilities” which require certain accommodations as they pertain. Chances are, the law will favor the people with disabilities and often accommodations for mental disorders. The moral of this story is that it would be in your best interest to resolve your conflicts person to person.
7- Batten down the hatches. The number of children diagnosed with autism has continued to increase in frequency in the last 20 years to epidemic proportions. We are right around the corner of seeing an enormous wave of these children becoming adult (if the wave is not upon us already). If you are one of the few that believe that this the result in a simple change in diagnosis methodology, only time will tell. Who knows, you may just wake up one day and realize that “typically” minded people are actually the ones in the minority and that they are the ones with the disorder.
8- Pay attention. If you are reading this and you are surprised by any of it, take note. If you see that someone is not being given fair consideration, have the courage to ask questions…even if you think you are the only one in the crowd that feels that way. You will probably be pleasantly surprised by what can happen when you speak up. I would not recommend finger-pointing, but at least take the time to inquire enough to answer the question in your own mind as to whether someone is getting a fair shake.
9- If you see someone struggling, let them do their thing (no one knows how to manage their autistic child’s behaviors like their primary care giver), but maybe there is something you can help with (carry a stroller onto a bus, offer to put groceries into a trunk or simply give a gawking onlooker some explanation for what they are witnessing). From someone who has done this exact thing on occasion, I promise you this, you will find that there is nothing more exhilarating than the sense of satisfaction you receive from helping someone in need. Sometimes your offer to help might be turned down, but the offer itself can be encouraging.

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