Why Parents Of Newly Diagnosed Kids Should Stay Away From Google


Seven years ago, after an assessment that had gone on for a month, a doctor told me that my son had autism. I went home from that appointment and did what many people would do: I sat at my computer, went onto Google and typed in autism. I started reading and didn’t stop until my husband dragged me to bed with red eyes and an aching back in the early hours of the morning. A pattern started: I would wake up early, read about autism, go to work, come home, read about autism, do mom stuff, put the kids to bed, and read about autism until I was stopped or until I fell asleep at my desk.

After almost a month of this, my doctor – a different one – handed me a prescription for antidepressants, talked me down from a frightening ledge, and gave me a thirty-day ban from looking up anything autism-related on my computer. Looking back, I wish I had seen my doctor sooner. That ban that he imposed on me probably saved me from complete insanity.

When a child is diagnosed with something, the parents instinctively want to find out as much as they can about the condition. They operate under the belief that knowledge is power, and that constant research will yield solutions and methods and answers. In reality, all the constant research yields is more questions and confusion, along with a good dollop of guilt.

Here’s the problem with online research. When you do a Google search of autism, this is what you get:


If you are in that surreal, mind-altered state that comes immediately after your child’s diagnosis, you have no idea how to refine that search. You are so desperate for any information at all that you cannot tell the facts from the fiction, so you just assume that everything you read is true. As a result, you start believing all of those articles that say you caused your child’s autism by vaccinating, or by cooking the wrong foods, or by using bug spray while you were pregnant.

At the same time, you find conflicting information about what you’re supposed to do. How do you choose from a wide range of therapeutic approaches, all of which claim to be the be-all and end-all? Do you medicate or not? Do you start imposing special diets, or do you stick to what you know your child will eat? Do you impose a strict routine to make things easier for your child, or do you switch things up a little in an effort to replicate the “real” world? Do you believe the miracle-cure claims of people who promote hyperbaric oxygen therapy, massive doses of Vitamin D or – God help us – chelation therapy?

The thing is, all of that obsessive research is not necessary. When children are diagnosed with autism or some other condition, most doctors will give the parents a bundle of papers to read: print-outs of articles, information sheets, a diagnostic report containing information and recommendations. In the early days, while you are processing the shock of the diagnosis, that is enough. You have to give yourself time to settle your head before you start going nuts on the Internet. If you absolutely cannot resist the compulsion to do online research, don’t use Google. Ask your doctor for a list of recommended links, and restrict yourself to those.

After a bit of time has passed, you do get to a point where you can do a focused search for information. You get to know which of your child’s quirks are indicative of his or her autism, and you discover what sets off meltdowns and episodes of sensory overload. You are able to conduct your research based not on a distressed response to devastating news, but on a calm assessment of your child’s unique needs and challenges.

In the beginning, though, you don’t need that. What you need more than anything is to be kind to yourself.

This is an original post by Kirsten Doyle. Google search screenshot by the author. Header image attributed to Valeriy Osipov. This picture has a creative commons attribution license.


Too Much Information?

Today’s prompt in the National Health Blog Post Month challenge invites participants to talk about disclosure. How do we decide what to share and what not to share in our posts?

This is a question I grapple with from time to time, as all bloggers should. As soon as you put any aspect of your life onto the Internet, you can say goodbye to privacy. Sometimes that really doesn’t matter. There’s no danger in me posting my race times and less-than-flattering photographs of myself in motion. Any Joe on the street can go online and look up my race times anyway. Since that information is publicly available, I may as well post it in my blog where I can brag about it a little.

I am equally open about my son’s autism and the challenges it presents to my family. This is where the question of disclosure becomes a little tricky, because I am being open about people other than myself. There are certain things that I will not discuss on the Internet, but in general I talk quite freely about the lives of my kids, and to a lesser extent, my husband. It is one thing for me to talk about myself, but my right to make that decision on behalf of my children is a bit of a gray area.

My blog serves multiple purposes. It’s a form of expression for my socially anxious, bad-at-verbal-conversation self. Writers as a breed tend to be a little neurotic and introverted, and I am no exception. This is how we communicate. Writing gives us a voice that we wouldn’t otherwise have.

Apart from fulfilling my own need for self-expression, my blog gives hope to other parents of special needs children who might be feeling a little lost and alone. From time to time, I get emails from readers telling me how my writing has made them feel less overwhelmed, and more able to cope. Those emails make everything truly worthwhile, because at the end of the day, what I want is to do my small part to make the world a better place for our kids, for the parents and siblings, for everybody.

At the same time, I hope to smash the stigmas surrounding autism, and the way I see it, the best way to do that is to be frank about it all. People are afraid of what they don’t understand, and in talking about autism, I hope to give it a human face, to give people the message that although there are little kids with autism, they are first and foremost little kids.

There are aspects of my kids’ lives that I will never talk about on my blog. My basic rule is this: if I cannot talk about it in public, I cannot talk about it on my blog. I agonize over many of my posts, weighing the benefits of sharing information against the risk of anyone getting hurt. I have written entire posts and then deleted them without publishing them.

It’s a delicate balancing act sometimes, and I find that as long as I listen to my gut instinct, it’s OK.

How do you decide what information to share on your blog? Have you ever shared something and later regretted it?

(Photo credit: John “Pathfinder” Lester. This picture has a creative commons attribution license.)


Twitter Tuesday: A Day Late (#thingsbetterthanSOPA)

The only reason I save blog posts about Twitter for Tuesdays is that the words Twitter and Tuesday happen to start with the same letter. If there’s nothing Tweetworthy happening on Tuesdays, I simply give Twitter Tuesday a miss until the following week.

If, on the other hand, the Tweetworthy stuff happens on Wednesdays, I write about it anyway, and then claim that Twitter Tuesday was a day late. Even if I’ve already posted to my blog on said Wednesday, about a topic that has nothing to do with Twitter. Or Wednesdays. Or, for that matter, Tuesdays.

Today, Twitter Tuesday is a day late. In keeping with the general theme of the day, the trending topic I’m following is… *drumroll please*… #thingsbetterthanSOPA.

For those who don’t know, SOPA is proposed anti-piracy legislation. There are fears that if the bill is passed, the Internet could be crippled by the American government taking sites offline. The seemingly overwhelming consensus is that SOPA – dubbed by many as Internet censorship – will not have the desired effect of protecting intellectual property. Instead, it will impede free speech and interfere with the flow of information. Although SOPA would be American legislation, it would have effects that stretch far beyond American borders.

The following tweets suggest that – well, anything is better than SOPA.

* Getting a prostate exam from Edward Scissorhands #thingsbetterthanSOPA (@browland1)

* #thingsbetterthanSOPA Bullying. Why doesn’t the government try to stop that, which affects a larger number of people and it’s more dangerous? (@thisKINGDarren)

* #thingsbetterthanSOPA river dancing bare foot in a bunch of lego blocks (@vivesmariano)

* #thingsbetterthanSOPA Bacon (@ERIC_CARTMAN)

* Masturbating with a cheese grater #thingsbetterthanSOPA (@thunt27)

* keeping up with the kardasians #thingsbetterthansopa (@ItsBennyBlanco)

*paper cuts between your fingers #thingsbetterthanSOPA (@AlwaysxTeen)

* #thingsbetterthanSOPA Status quo: One episode of MTV cribs is enough to show you that nobody is suffering from copyright infringement.

* #thingsbetterthanSOPA Harry bloody Potter (@JoRowlingNet)

* #thingsbetterthanSOPA Stabbing myself multiple times in the face with a fork (@lucky kpak)

* Standing on hot coal while reciting the alphabet #thingsbetterthanSOPA (@Mz_redhott88)

* #thingsbetterthanSOPA Slidingdown a banister of razorblades into a pool of rubbing alcohol (@WittleKayl)

* #ThingsbetterthanSOPA watching white paint dry (@Killin_Ninjas)

* being kicked in the nuts #thingsbetterthanSOPA (@SamEzraYoung)

* #thingsbetterthanSOPA being eaten by a duck. (@imquitegood)

What, in your opinion, is better than SOPA? What about things that are worse than SOPA?