September 2012

Stop Reading About Autism in the News

by Tim on September 14, 2012

It seems like every other day a new article is posted about some new study or theory about what causes autism. Some of them sound at least somewhat medical, like autism relating to the age of the parents, changes in a gene sequence, or exposure to some chemical. Others are completely kooky like living near suburban highways or the moon phase when the child was conceived. (OK, I made that last one up, but it’s not any more bizarre than some I’ve read.)

People often ask me how on earth we’re supposed to make sense of all these studies and news articles when most of us have little or no scientific background? Very good question. It’s one I think I at last have a response I’m satisfied with. And it’s one I think a number of people won’t like. Here it is.

Stop reading them. All of them.

If you see a headline suggesting anything causes autism, run. If you see a headline suggesting some new treatment for autism, run. Do not click on it. Do not read any part of it. Try to pretend you didn’t even see the headline.

I’m not kidding.

If scientists discover something that actually holds up under exhaustive research and that would make a significant difference in our children’s lives, you will know. There would be no way to remain in the dark about such a momentous discovery. Anything else beyond a rigorously-tested conclusion verified over time by multiple studies is just a distraction to most of us.

You can find a study somewhere suggesting links between autism and literally a thousand different possible causes. They come out about every five minutes. Most of these studies are barely the beginning of the rigorous research required to draw any serious conclusions. And many of them are total crap.

To have any real validity, any findings have to endure the scrutiny of other scientists, be reviewed and tested again and again, and generally withstand the test of time. One small study and a press release do not constitute scientific fact. It is at best step one of a very long process. Many of them are plain worthless.

Reports of these studies get published in the news before their conclusions are barely even tested. You see them online as “Autism may be related to X” where X may be just about anything you could dream up. People pounce all over them if they support or disapprove their favored theories about autism. Many parents have no way to know whether the conclusions are remotely valid or not.

If it’s in the news, that gives it weight and credibility, even if the studies don’t deserve either. This is why I’m telling you to stop reading.

Many of these news articles are written by people with little scientific knowledge. They lack the expertise to question the studies’ authors. They just report whatever the researchers tell them, and believe it or not, often the news writers come to conclusions that even the researchers themselves did not.

When all many of these studies do is confuse us and take away energy we need to spend elsewhere, all for theories that are rarely more than conjecture anyway, I suggest that our best approach is to ignore them.

I’m not qualified to critique the intricacies of most research, particularly without access to the paper, the data, or much of anything else. And frankly, it’s quite likely neither are you.

Occasionally a quality study will rise up in the news. They are often the ones that come with little fanfare. The reality is that most research isn’t all that glamorous or earth-shattering. Discoveries are made slowly but surely through dedicated, meticulous effort, rigorous testing, and careful thought as to what it all means. They unfold over time through the dedication of scientists determined to find the truth. Most studies in the news have not even begun to approach this standard.

I am all for the expansion of knowledge, but think about it. When did any study last do anything but add confusion and stress to your life? How many wrong directions have you been steered in? When did you last learn anything you could use? Assuming you did, did it actually help? It’s more likely these articles left you feeling guilty, confused, misled, or all of the above.

You and I only have finite amounts of energy and time. We need every bit of it just to have a chance to do the essentials each day. I often tell people, “If it’s actually urgent, important, or essential, set it on fire and throw it at me. Otherwise, I’ll likely ignore it.”

Ignoring news reports about autism does not mean you’re shirking your responsibility to learn what you need to know about autism. You are prioritizing. This is triage.

What is most essential right now for you to help your child? I truly believe that 99.99999% of the time news about autism in the media doesn’t meet that standard. Focus on what does.

Give yourself permission to focus on what’s most important. I believe you’ll be glad you did.

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Help Yourself, Help Your Child

by Tim on September 9, 2012

Two years ago, I went through one of the worst periods of burnout in my life. It was so bad that I dubbed it The Great Burnout. Everything took enormous effort. I was doing everything badly, I was noticeably overweight, my health was going downhill, and I felt defeated. I sincerely believed I wasn’t strong enough to be a parent anymore.

My sister’s family kept the kids for a week while Mary and I went to a remote cabin to sleep and regroup. I did almost nothing except sleep for four straight days. I finally woke up enough to realize I couldn’t live like this anymore. If I wanted to be the parent our kids needed, it was up to me to get it together.

I came to understand one essential truth: Your child’s success is inextricably linked to your ability to take care of yourself and become a strong enough parent for what you’ll encounter.

We can write-up and follow the advice of “8 Steps To Doing This” and “7 Tips for Success at That” type posts every day and still not take care of a fundamental part of the equation – us.

Going from Burnout to a Better Life

We frantically run ourselves into the ground, calling it ‘sacrifice’. Sacrifice is laudable, but that’s not what we’re actually doing. Sacrificing is about selectively and carefully giving up something important to help someone else gain or succeed. Therein lies the key. It’s done thoughtfully, carefully, and to achieve a certain goal. Burning ourselves out isn’t thoughtful, careful, or anything else, and it certainly doesn’t help our children.

Ideally, we’d sleep eight hours a day, exercise 30 minutes most days, eat well-balanced meals, take time for ourselves, and all that, but we all know how hard that is. What I decided to do to change my life was much simpler.

I resolved to make small changes over time and let that build up toward a healthier lifestyle. I knew I was not helping my kids, my marriage, or myself with my old habits. I had to start changing a little at a time until I got to a better place.

I believed that in time I would create enough momentum to make lasting changes in my life, and these changes would then make me a better, more present, more engaged, and generally more capable parent. And I believe it has.

Small Steps to Get Started

Since I made this decision, I’ve run over 1,700 miles, completed two marathons, lost about 30 pounds, improved my health tremendously, gotten off most medications, and, most importantly, most days I feel more able to manage the ongoing needs of our children. I did all this by starting small, keeping at it little by little, and not quitting.

But here’s the hard truth that has become so apparently to me lately. The decision to take better care of yourself is one you have to make daily.

It has been very hard around here lately. This summer has been a real struggle. I’ve slipped in several of my habits, and it shows. I’ve put a few pounds back on, I’m not in quite the shape I was in, I haven’t been exercising much, and my diet leaves something to be desired. I’m slipping because I lost focus on why it’s important to take care of myself. So I’m posting this now as much to remind myself of why I need to do this and the approach of taking small steps to get there.

So here are some small steps I’ve tried over the past two years. Let’s all pick a couple and get started today.

  • Do whatever you can to add 15-30 minutes of sleep to your night. Give up anything in your schedule that isn’t essential. Sleep makes everything else possible.
  • Meditate, pray, or just breathe quietly and sit still for five minutes a day. It’s challenging at first, but as an ongoing practice it does wonders for your mood.
  • Add some sort of physical exercise. Start with a few minutes a day. Keep it simple. Go up and down stairs, dance around your home to good music, lift gallon milk jugs or laundry detergent bottles, whatever works. I know you’re exhausted, but trust me. It won’t take much to start really improving your life.
  • Gradually ditch one unhealthy item in your life. I gave up soft drinks over a period of three months, lost a bunch of weight, and felt way better.
  • Turn off your TV, at least the news and advertisements. Ads exist solely to tell you how unworthy you are, a message we do not need, and news is full of things you honestly can’t do anything about. Focus on what you can change – your life.
  • Do something for yourself each day. Read a book for a few minutes, drink your coffee slowly, listen to some music you like. Little acts of self-care can do wonders.
  • Practice affirmations. We often think we’re clueless idiots. Affirmations counter that. Pick a few and commit them to memory. “I am a superhero parent”, “I kick ass”, whatever works for you. Read inspirational quotes each day. Keep a list of ones you love.
  • Learn to say ‘no’, ruthlessly if you have to. Your job is to take care of your children and yourself. That’s it. The rest can be ditched. Start clearing anything out of your life that isn’t essential.

As parents of special needs children, we have numerous demands and responsibilities to manage. To help your child overcome their challenges, start overcoming your own and become the best parent you can. When you can be more present and engaged in your child’s daily needs, great things can happen.

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