You’re stuck. Your child is not doing any better, or regressing, or your doctor has simply shrugged his shoulders, or said, “It’s just autism/his disability.” In your gut, though, you know something is wrong but no one seems to know how to help. You see friends who have kids with similar issues that are thriving. Why can’t yours? You want to do an autism intervention protocol but you don’t know where to start.
The best place to start is with science. Many parents I know raising autistic children post lots of science articles around their child’s issues. In fact, I have a friend who not only posts those articles, she also points out the theories that she found applied to her child. Drilling into that science helped her recover daughter from many of the behavioral and medical problems associated with autism.
I’ve done that too: learned about inflammation and autism, why eczema is common in our kids and how gut issues are tied to brain function. Any parent can learn how and what is physically going with their child by reading the latest science.
Reading Science Before Designing Your Child’s Autism Intervention Protocol
Very few people enjoying reading medical science. It’s often considered the “boring” part of the magazine or your feed. But when you read something that perfectly details what your child is going through, you become inspired to help address your child’s challenges, such as violent stimming, self-injury, aggression or painful sensory issues. That will recharge you and – dare I say – give you the hope you need to create a customized autism intervention protocol or strategy for your family.
Today, I’m going to teach you what I know about reading science, so that you can do your own research to help your childand make informed medical, biomedical and therapeutic choices for your child.
An Easy Guide to Reading Science
The best way to start is to dive right in, while keeping a few important questions in mind. You should begin slowly, with popular or short science articles. As you read, take notice of a few things:
- Who published this article?
Is it a science magazine, a mainstream outlet or a publication you’ve never heard of? If it’s unfamiliar, dig deeper to see who is behind the periodical. I often find articles from small interest groups, like an association that serves a particular group of health professionals, such as chiropractors or specialized pediatricians.
- Do they link to the science they quote?
Most of the time they will, but every now and then you’ll find an article without linked references. When that happens, they usually still list the study’s authors and the hospital/university/organization associated with it. If that’s the case, you can Google it on your own. If there are no references, I would question the purpose of the article. Perhaps they don’t want you to see the link to science. (Yes, I’ve come across that!)
- Look at the original study.
I know you won’t be able to read most of it, but you can learn who are the scientists involved, their organizations and who funded it. You can go read the scientist’s bios to find out if they have some kind of financial or professional interest in the results they came to. You can also skip to “Conclusions” and attempt to read that, if it’s not an article you have to pay for.
- Look for red flags.
A BIG red flag is if an article posts some science and then makes an assertion at the bottom that you should take this drug, vaccine, surgery, etc. That can mean that an organization has in some way paid for the article even if it isn’t obvious.
- Trust your gut.
Sometimes you’ll read something that just doesn’t make sense. Or you may read a sentence several times, thinking it says one thing, only to realize that it says the opposite. Sometimes it just feels wrong, like that article that said that margarine and soy-based vegetable oils are healthier than coconut oil. These internal red flags are not always accurate but can point to an agenda behind the article, if not the study.
- Examine the study.
There are LOTS of moving parts to a well-done study, and sometimes you’ll have to dig deep. Sometimes you won’t. I recently posted about a study that concluded oxytocin was beneficial for kids with autism and should be studied in more depth. In that study, there were only 32 kids tested altogether AND some kids who benefitted were given the placebo. This is not junk science, but an attempt to get more funding for this solution.
Follow Your Topics With MedCircle
It’s hard to keep up with all the science, but I was invited and compensated by MedCircle to share their product. This resource can help you more easily discover research that can benefit your child. MedCircle lets you sort through published articles by following specific topics. Once you create an account and log in, you can follow the subjects that affect you and your family.
For example, I followed these topics:
- Down syndrome
- Topics related to allergies and gut disorders, such as sinusitis and Celiac disease
Once you add topics and click “Home” button, you will see a list of articles broken out by subject. You can read these at your leisure by selecting “Save,” which posts the article to your personal library for easy reference. This is great for when you get called away for a kid emergency! You can also Comment, Like, or Share articles right in the app.
As you become used to reading studies, you may want to know more details or definitions, like “de novo” or “comorbidity.” For now, you don’t need in-depth terms unless they keep cropping up in your subject. However, you should know a bit about the quality of the articles you read.
For Journals That Publish Studies: Impact Factor
You may not know what is or isn’t a “good” science journal. I learned at the ShiftCon conference that you can use something called “Impact Factor,” which is a rating based on the quality of a journal. I had no idea until I checked Wikipedia that there is actually a complex math formula for this!
Impact factor is not always reliable, but it is a good starting point. When I asked the scientist on the ShiftCon panel about what is considered a “good rating,” she shook her head. Basically, there is no “good” rating, they’re all relative but you can still look for a high number. Simply search the name of the journal with the words “impact factor” to see how they rate.
Grading for Evidence Based Science
Now, you’re thinking, ok, so if it’s peer-reviewed science from a reliable journal, it’s all good, right? Not quite. Studies are now being rated with a grading system. The grades are a combination of two numbers:
- Evidence grade:
The quality of the research is evaluated on a scale of I, II and III, where “I” means it’s plausible, precise and unbiased, and “III” meaning there are concerns which may limit how valuable the study is.
- Recommendation grade:
It’s then graded on a scale of A, B or C for whether or not it should be recommended, with “A” meaning there is good (research-based) evidence for recommending this treatment and “C” meaning it’s more doctor consensus than cold hard data evidence.
- How studies measure up:
A top grade for science then would be IA, but a 2009 study of treatments used by the American Heart Association and American College Cardiology showed that: “Only 19% of those with Evidence level A were also given a ranking of 1, meaning there was a general consensus within the profession that this was the best course of treatment. 48% of all treatments analyzed had an evidence level of C, meaning there was little evidence to back them up.”
That means, studies that have low evidence and recommendation grades are likely being used to treat patients regularly, at least in the field of cardiology. No doubt many other studies you read will fall into this category.
Unfortunately, science can be bought and sold. In fact, Nobel prize winning American biologist Randy Schekman stopped sending his research to top tier scientific journals. He is quoted by the Guardian saying, “pressure to publish in ‘luxury’ journals encouraged researchers to cut corners and pursue trendy fields of science instead of doing more important work.” (Emphasis is mine.) You can read his editorial on how funding and bonuses are hurting scientific journals.
NPR has also reported on how some online journals are scamming scientists. They report that there are fake journals with names similar to legitimate journals, publishing content for a fee.
Then there is the question of how valuable the studies are. The Guardian also published an article on “Useless and Expensive Research,” citing studies that include things like:
- research that teens who watch too much TV do less homework
- how to make the perfect cup of tea
- how does a cookie crumble
Crafting Your Autism Intervention Protocol
By now, you might want to throw in the towel here and just trust your pediatrician or general practitioner 100% of the time. If you’re lucky, you know him or her very well, but that’s often not the case. Pediatricians may see over 1500 patients per year. If time with your pediatrician is only 5-7 minutes per year, how well can he or she understand your child’s needs and health? Between sponsored science and overworked physicians, parents need to be scientifically savvy.
Reading science is the best way to start crafting your child’s autism intervention protocol. We should do our own homework on how today’s research can help our kids, either by showing us what we can do or by showing us what to avoid:
- Whether or not to trust commonplace traditional medical treatments, such as over-the-counter or prescriptions drugs, like MiraLAX.
- Creating a nutritional plan that can heal his or her gut, such as considering the GAPS diet.
- Investigating the pros and cons of alternative treatments, like homeopathy or herbal remedies.
- Finding a specialist that is trained in cutting edge treatment of your child’s condition, like a MAPS doctor or a PANDAS specialist.
Unfortunately, I know far too many parents on the side of “I wish I knew then what I knew now.” You don’t have to be that parent. Instead, you can learn to read science to help your child! You can do this! Your child will benefit from your hard work. It’s happened for my kids. I’d love to see you healing your child right alongside me!