Something’s been bothering me for a long time now. It shouldn’t because many of us would be lost without it. Parents get ripped a new one for using it. But, lots of us, not just autism parents, continue to rely on it. What is this thing I’m talking about?
Now, before some of you who lurk on this page have the chance to roll your eyes, please consider how much you yourself use the internet.
Do you shop online?
Do you download music for your iPod or add books to your Kindle?
Do you order stamps, check on deliveries or schedule appointments on the Internet?
Do you do your banking or pay your bills with secure web browsers?
Do you communicate on message boards or Twitter?
Are your circle of friends on Facebook, Google+ or Pinterest?
How many of you keep up with your home team checking the latest stats on the team website? Who’s made financial gains after buying stocks via an e-trading company? What about your taxes? Did you e-file last year or get a direct deposit of your return to your savings account? Have you ever checked in for travel on an airline’s site? Isn’t it amazing in that with just one click of the mouse a getaway trip is confirmed and a jet awaits you at the airport?
The Internet is host to anything and really, just about everything. Just about everything can now be blogged, posted, shared and pinned. Both good news and bad news can be found while cruising the net—from joyous life moments like birth announcements, engagements and holiday adventures to creating memorial pages or charitable trusts for a lost family member. I think it goes without saying, and that many will agree, that the Internet has a great many uses and makes life a lot easier, not just for a few, but for millions across the globe. So, why is it okay for some people to use the Internet to research or promote their thoughts and agendas, but it’s perceived as practically sinful when others, like parents of vaccine-injured children, use it for the same purpose?
Websites provide answers. They list information that would be incredibly difficult to find elsewhere. From mindless entertainment to state-of-the-art advancements, websites reveal a multitude of facts, data, medical breakthroughs and more. It truly is incredible. Within nanoseconds what can be looked up on the internet has helped someone make a life-saving decision or given peace of mind. Who doesn’t appreciate that kind of immediate information and gratification?
I know that some people don’t appreciate what’s accessible on the web, especially when an autism parent finds it and begins to cite it. Those answers, that research, these numbers, that cover up. The information is there as plain as day, but we’re told how foolish we are for looking it. It’s as if we’ve stumbled upon a national secret. Heaven forbid parents take that information and think it beneficial in their search for help! And, they better not share that information with anyone, especially with that doctor who won’t admit he’s got less knowledge than that answer-wielding parent!
For a parent to admit they might have looked something up “online” while face-to-face in an exam room with their child’s medical provider—oh, boy. You would have thought it criminal. Why, that kind of behavior should be outlawed! Parents are told how mistaken they are and how wrong it is to cross that line. Parents being read the riot act for being proactive? That can’t happen, can it? Yes, it does. I should know. I was that parent. I took the time to do a little bit of research. To make simple statements about Ronan’s health that were backed by science. To say, “Hey, doc. If this, then that, right?” Wrong! What follows that kind of input? The hairy eyeball and a condescending how-dare-you look. To top it off, I got a lecture about how it’s not my place to do that kind of research for my child. Hrmpf!
Several incidents within a week’s time had me reeling about how some medical people guard the Internet as if it was their own. Oh, that look of disdain they threw toward me when that word came out of my mouth. Give me a break! Not only do they sound ridiculous, they looked ridiculous as they tried to dismiss my well thought out, educationally-minded, researched contribution about my son’s issues. It wasn’t rubbish. It most certainly wasn’t some back alley mumbo jumbo. What I shared was information reported on credible sites and in online medical journals that they also have access to. I spent as much concentration, time and detail to what I discovered—which would be the same effort that they or any research assistant would have spent on the subject. The subject? My son. The kid standing in front of them. The one with the five-inch thick medical record. The child they promised to help. But won’t and instead choose to fight me on my use of the Internet.
I shouldn’t have to curb what I say to a doctor when it comes to Ronan. When Ronan’s the focus of the conversation, it should be a two-way dialogue I have with his doctor: I state the obvious (He’s sick again. I came to you for your expertise.), and they reply with logic (I can see that; thanks for asking me to help. Tell me more so we can work together.). But it doesn’t always go that way. With some people, it’s only going to be their way or no way, especially if I throw that word Internet into the conversation. Their ego, response and poor attitude that some medical professionals possess will never allow for meaningful conversation. It only delays my hope to reach an important goal—to help a sick child, my child.
As the focus moves far from my child and his needs, I’m told to stay away from the Internet. In fact, don’t use it for any reason. I’m tossed outdated facts and illogical suggestions of useless, watered-down fabrications while Ronan’s health is now completely ignored. I went in asking for help, and I’m presented with nothing more than regurgitated-textbook mantra or worse, quoted studies funded by manufacturers or drug-makers themselves. At that point, I know that it’s time to go.
It’s a shame, really. But it isn’t worth my time or my child’s life to continue speaking with people who cover their ears and then dismiss me the second I utter their sacred word. When I am so bold to say Internet, and if the response is watching grown people throw a hissy fit about it, I know their days on Ronan’s team are numbered. I’ll be forced to search for a suitable replacement. Lucky for me, though, I can use the Internet as my guide! With all that I can find on the web, I will read up on the next doctor’s credentials or that clinic’s success rate or a new therapist’s background. I will do as much as I can, and read everything as possible so that Ronan’s needs aren’t compromised.
I’m constantly on the Internet. I know other parents and many doctors, nurses, administrators, educators, therapists and all sorts of professionals from every field are as well. Most everyone relies on the information they find online for some reason or another. For their personal gain or to share knowledge, the Internet has been a valuable tool. Dodging pointed questions and concerns from a parent who merely wants to be informed, and stating that if they use websites or documents found on the Internet is objectionable—be it information about autism, vaccines, medical procedures, pharmaceuticals or bureaucratic practices—it’s all very absurd.
We live in a big, big world where the Internet has only improved since its inception. It provides more and more, and faster and faster now, too. Countless people are kept abreast with research, with advancements and with the latest and greatest. Information needed and information that is able to save lives can be found on many, many webpages. Limiting that information and telling parents to stop talking about what they find online makes me think someone doesn’t want parents to find out the truth (or better yet, the lies). Deciding who is worthy enough to peek at that information isn’t right. It certainly won’t help parents help their children. And, ultimately, improving their child’s life is the goal. Parents will continue to do all of that and so much more for their children because others willingly left them behind.
Cathy Jameson is a Contributing Editor for Age of Autism.