Health and wellness touch each of us differently. This is one person’s story.
When my daughter Lily was in the process of getting her autism diagnosis, I remember my wife and I vowing that we would leave no stone unturned helping her to be, in our words, “the best Lily she can be.”
At that time, we were visiting specialist after specialist. Each were shaking their respective heads and saying things like, “She’s a bit of a puzzle.”
We had no information and we were starving for answers.
Fast forward to today: Still starving for answers, but neck-deep in information. Much of it useless at best, and harmful at worst. But also, yes, sometimes — somewhere in there — is some actual help.
Somewhere in there is information that I can use to make it easier for my daughter to access learning, or make her more comfortable in her own skin, or less anxious.
But how do you find the good stuff without wasting all your time chasing snake oil?
How do you dig out from under the rest?
How do you filter out all the noise?
Be your own filter
1. You get to pick your sources
You get to decide who you listen to and who you don’t. Relatives, friends, and others you cherish — you’ll respond to them differently than to well-meaning strangers offering meltdown suggestions in your local grocery store.
And if you don’t want to hear the noise from someone in particular, choose to listen to someone else.
2. Learn to say no
There are plenty of ways to politely decline offered information. Even those closest to you won’t always have helpful information to share.
Saying no is okay. You’re the boss.
3. Turn it off and tune it out
Take a break from the internet.
Social media bombards you with information — some great, some not so great. There’s often no surefire way to tell what’s what at a glance.
Sometimes it’s overwhelming because you vowed to leave ‘no stone unturned’ — as I did — and you don’t want to overlook that one thing that might help. But it’s exhausting, confusing, and overwhelming to process the constant barrage of articles — while dinner needs to be made and the laundry is still in the dryer.
Take a break. Fold some clothes. Grab a cup of coffee. Chill out.
Sometimes there’s too much... muchness. My doctor told me (when I complained I’m getting absent-minded in my old age) that there’s a finite stack of items we can process at a time. If we’re stretched to our limit and a new task or bit of info is added, then something else has to drop off.
When people bring up new treatments, therapies, studies, or articles — stop them. Say: “Thank you so much, but can you email that to me? Or text? I’ll never remember it.”
It’s easier than saying no, and if you’re really interested in looking into it, this gives you a reminder to return to it later on.
Hopefully these tips help limit the sources of some of the noise. But it’s not all noise, is it? There might be some useful stuff hidden in there.
How do you get at that useful stuff without wasting all the time you saved? How can you quickly evaluate what you’ve read or heard?
Pick trusted sources
5. Find your autism tribe
One of the best things I ever did was join autism and autism caregiver support groups on social media.
Here were people in the same boat I was in. Here were people who had already investigated the things I was investigating. Here were people who had their own experiences and trusted sources for me to bounce ideas off of, or who were asking the same questions I wanted answers to.
These groups allowed me to quietly and passively listen along as others responded and I absorbed.
6. Determine reliable websites vs. quack sites
There’s nothing new about fake news. You can find just as many articles touting the merits of some treatment du jour, as you can an opposing side vilifying it.
Spend some time figuring out which is which. There are even websites to help you evaluate websites: Quackwatch, for example, exposes very questionable sources. Healthline has doctors vet the articles they post to verify they’re medically accurate.
Once you find a dozen or so of these reliable sources, save them to your ‘favorites’ so you can search them easily and regularly.
7. Rely on your regular doctors
By now, you probably have at least two specialists working with your child. You better believe my own daughter’s geneticist, neurologist, and developmental pediatrician all vet the information I’m interested in with regard to approaching my child’s treatment.
8. Align yourself with a charity you trust
My own favorite autism charity — operated primarily by volunteers with special needs children of their own — often posts articles they find interesting or relevant and sends them via email blast to members.
I can hit delete, or maybe something will catch my eye and I’ll do a little digging. I can also follow up with them and check topical literature out from their library.
Researching takes some work, and implementing takes even more. If you’ve made it this far, you still might have a whole host of potential things to try or read.
9. Approach it like a scientist
When trying new treatments, change only one variable at a time. Scientists ensure clear-cut results by trying to tackle problems one variable at a time. If you adjust more, you won’t know which variable was actually effective.
This approach also gives you an out for any new suggestions that come your way: “Sorry, I can’t try that until we’ve finished this.”
10. Make a list
I make lists for everything. As I mentioned, my brain queue has limits, so lists have become my favorite tool — not just for making sense of all the conflicting therapies and treatments that come my way, but also for reminding me to make phone calls or plan out my weekly grocery shopping.
Make a list of all the treatments or therapies you’ve vetted. Arrange data and treatments in columns according to your desire to investigate or implement them.
Collectively, these 10 tips will help you manage the overwhelming sea of advice and information. Start with easy steps and build from there. Make your list. Share your list with your doctor. Use your ‘trusted’ sources to help you figure out which of the 3 or 4… or 40 things you should tackle first.
Right now, we’re working with my daughter on her seizure activity. That’s her medical priority. The doctor is able to tell me whether I should hold off on pursuing the next thing because he first wants to know that the seizures are under control.
Finally… make your peace with a bit of noise. Noise means there are more suggestions — there’s more information. Noise means someone thinks something else might help. A little noise (hopefully a little less, once you’ve adjusted your approach a bit) can be reassuring, perhaps provide hope in a particularly hopeless situation.
You’re trying to do your best. As long as it’s manageable, sometimes a little noise can be the soft, soothing fan on the nightstand of your autism journey. And if you’re like me, you sleep best with the fan on.